tag:blogger.com,1999:blog-3958868542770654272024-03-14T11:14:47.039-05:00Count It All Joy--Count it all joy when you meet trials of various kinds, for you know that the testing of your faith produces endurance. James 1:2-3--
When I first started this blog I wondered what I would ever write about. We have since welcomed a child with spina bifida and another with Down syndrome. This has become a blog about our family and what it means to love and grow together even when life doesn't turn out how we planned it to be. We are learning to count it all joy.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.comBlogger223125tag:blogger.com,1999:blog-395886854277065427.post-71997404354166873882019-06-10T16:53:00.001-05:002019-06-10T16:53:20.942-05:00The Things That Come UpWe haven't really been a 'summer activities' kind of family. None of the boys seem too interested in team sports and, other than a few swimming lessons so the boys wouldn't panic in water, summer camp and VBS, we've found our own fun to do in the warm months.<br />
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This year Caedmon insisted he wanted to find a theater class to take. The insistence is usually what motivates me to find what one of my kids is looking for. He reminded me for two weeks, after I talked to his dad, while we were figuring out the budget and what we could afford, and when I forgot because of all the end of school busyness.<br />
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Because of his motivation, I finally got on line and actually registered him for a class. He was so very thrilled he went to school the next day, in the middle of May, and invited every one of his friends to come on the last day to see him in a play, in July. He wanted to know what part he would get, if he would have lines, if he would have a main role. I tried to help him see that since this was his very first time in theater, he may not get a main role but whatever he got we'd be so proud of him.<br />
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And then I had to build up the motivation to do what every parent of a kid with special needs has to do, be the advocate. The longer I sat on it, the more I dreaded contacting the person in charge of the class. I started to be sure that they were going to be upset that he had special needs, that they would see it as too much to deal with and would ask that we withdraw him. My anxiety, it seems, knows no bounds when it comes to worst case scenarios.<br />
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It took me a month to finally send the email. And really all I needed to explain was that he needed help at lunchtime so his dad or I would be coming in to help him at that time. The person at the theater couldn't have been kinder and replied quickly and enthusiastically that he would be welcomed and please let them know if he needs any other accommodations.<br />
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All the build-up now seems so ridiculous really. I think it comes from reading way too many stories where people were unkind or downright cruel to people with disabilities. But in my experience we have never run across that. People have always been kind, even just to smile and say 'hello' to my boys. Just another reminder that advocating can be hard but it is so worth it. I cannot wait to see Caedmon on stage for the first time and know that the people at the theater are aware and positive about him being there!mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com3tag:blogger.com,1999:blog-395886854277065427.post-30643426193994531352018-12-02T20:47:00.003-06:002018-12-02T20:50:49.681-06:0010 Years!10 years ago tonight, I was lying all alone on a hospital bed. My husband had gone home to be with our oldest. My newly-born youngest was lying in a NICU in a different hospital 1/2 of a mile away. I was crying. My heart was hurting. I felt so very alone and so very guilty that my baby was in an incubator with no one to hold him, no familiar voices to hear, no homey feelings of anything of family.<br />
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When we had taken a tour of the hospital a month before, they had assured me that they had a closed-circuit television system for moms in my circumstances. They assured me that whenever I wanted to see my baby, I had only to turn on the tv and dial in a station that only I could see. It would be linked to a camera above my baby's bed and I would be able to watch him anytime.<br />
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So, through my tears, I turned the tv on, dialed in the station and . . . nothing . . . static. I called the nurse's station and explained the situation. They assured me a technician would come as soon as possible and get it all set up.<br />
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So I waited.<br />
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And waited.<br />
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And WAITED.<br />
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It took 2 hours. And when the technician came, he told me there was nothing he could do. The system was down.<br />
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I felt so desperate.<br />
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I called the nurse's station again, as I was told.<br />
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Could someone please come to transport me to the Children's Hospital? As soon as they can, I was told.<br />
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So I waited.<br />
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And waited.<br />
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And WAITED.<br />
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After an hour, I decided it was ridiculous. I got myself out of bed. And I walked the 1/2 mile, through the maze of halls and elevators and the tunnel linking the hospitals together, to go find my baby. I remember feeling like I was breaking out of a jail, wondering if anyone thought it was odd to see a woman in a hospital gown (covered by a robe, I wasn't completely insane) waddling along and if anyone would try to stop me. Nobody did.<br />
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I was in so much pain and I was so tired by the time I got to his bedside. And I was all kinds of emotional. But to be able to touch his hand, and look at him, and talk to him, that was all I needed. I sat there for a long, long time. Until my head started to droop and I knew I needed to get some rest.<br />
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I can't remember if anyone took me back to my room. I don't really remember anything else of that night. I know the next morning they came to say I was discharged. I remember being so relieved to see my husband and have him push me in a wheelchair down the long corridors. It was the hardest thing ever to kiss Caedmon goodbye, get in the car without him, and head home. Lying in bed with him tonight, hearing him tell me he loves me, getting one last hug from him before I left his room, it feels like a world away.<br />
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Happy birthday, kiddo. We have been through a lot, you and I. So thankful we get to be on this journey together. So thankful I can go in your room anytime I want and see your sweet face.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com0tag:blogger.com,1999:blog-395886854277065427.post-38612946003148787442018-11-13T00:32:00.000-06:002018-11-13T00:32:15.710-06:00CareSomething that is becoming painfully obvious to me as the years go by is that as the years go by I am more and more tired. Parenting kids with special needs takes energy. At first there is a natural energy that comes with having a new baby, then an older baby, and a toddler and the regular + a little more activity that comes with parenting that age group. But then your child hits the school years, and instead of your child becoming more and more independent and less and less in need of you, there is the same amount of energy needed, sometimes more depending on the mobility of your child and how much they have grown, to continue to give them the cares they need.<br />
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And you know what this means? It means that there is more and more of a reason for you to take care of yourself. To have hobbies and activities away from your children that can feed you and energize you.<br />
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It also means that it is harder and harder to get away because it takes more and more energy to get yourself out to do something.<br />
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I remember noticing the mothers of older children when I would take my babies to medical appointments. I would note how tired they looked, how it seemed like they needed a haircut or a change of clothes or a long walk. I wanted to know what made them look so tired and why it was that they didn't seem to take care of themselves.<br />
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Now I get it.<br />
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I don't think it's inevitable. Not every parent I've met fits into the category I observed what seems like so long ago. And maybe those parents didn't either, I just saw them on a bad day. But the point is, I feel now like they appeared to me back then.<br />
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And I don't like it.<br />
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I want to care about myself. I want to have a bounce in my step and a goal I'm working toward and a life outside of my kids and work.<br />
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It is not selfish, it is healthy.<br />
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I have to tell myself that because 1) it's true and 2) our society has some pretty messed up ideas of what makes a good parent and 3) we buy in to too many lies about what constitutes a happy family.<br />
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A new day has just started as I'm typing these words. So silly to wait for New Year's Day to decide to change things for yourself. So I am deciding for today to do something that gives me joy, even if it's putting on a song I like and dancing in the kitchen. And I will, for today, do something good for my body, like 10 push-ups and 10 lunges. And I will, just for today, take intentional time to focus on God and His wisdom and power. And I will connect with one adult, even if it's just a text telling them how important they are to me. And I will be thankful for all I have, just for today.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com0tag:blogger.com,1999:blog-395886854277065427.post-79813349315660764202018-10-12T21:21:00.000-05:002018-10-12T21:21:08.076-05:00TransitionsAfter a lot of thought, research, time spent in various DCD (Developmental and Cognitive Delays) classrooms across our district as a substitute teacher and substitute para, meetings with Asher's team at his school, seeing his general ed class time dwindle to a measly 30 minutes a day, with an hour of special classes, no recess time with his peers, shortage of staff, and behavioral issues emerging, Adam and I made the difficult decision to home school Asher. He will join our church school for lunch times and recess times, field trips, music classes and art classes as well as getting involved with local homeschooling groups and GiGi's Playhouse.<br />
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Thursday was his first day at home. I brought him to our church school for lunch and recess. He picked a seat next to Caedmon. I gave them space and sat at the end of the table. Watching him from a distance as he looked around and took in this unfamiliar position with familiar kids and a familiar setting, was joy for me. I didn't realize until that moment how much pent up tension I had been holding in every time I sent him to school.<br />
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Between lunch and recess, all the kids in the school have chores to do, ranging from vacuuming to watering plants, getting the mail to taking out the trash. One of the second graders asked Asher if he would like to help him with his chore, emptying class trash cans into a larger trash can. 'Sure!' Asher said. They each picked up a trash can and Asher followed him to see what to do next. A few minutes later they were back, Asher was beaming, no adults had to follow him or check up on him, he was able to be independent and autonomous! Outside of home, that was really a first for him. He then helped pick up paper and pencils off the floor and stack chairs so another team could vacuum the classroom. It was awesome to watch him dive right in to whatever was asked of him.<br />
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Outside, he played! He felt comfortable enough to ask for a ball! Having gone to recess with him several times, I can say with confidence that he never once got to play with a ball at his public school. This is because there are limited balls and by the time his class would get out for recess at the same time another grade was out, all the balls would be taken. And I never really saw him play. He would just wander around the playground until it was time to go in.<br />
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It just was right. It was the right place for him to be.<br />
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And my time subbing has not been a waste. The reason I didn't home school him before was I felt a total lack of confidence that I would do a good job. That he would not get everything he needs. But after observing what is done in the center based classrooms, I know I can do a great job and work with exactly what he needs. And the opportunity for him to be a part of a school community, really a school family, who will embrace him, accept him, include him, is priceless!<br />
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I am so excited for this journey to start!mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com0tag:blogger.com,1999:blog-395886854277065427.post-57370910667143891752018-05-16T22:21:00.002-05:002018-05-17T11:31:30.936-05:00Also TrueThe night after I wrote my last stormy post, Asher climbed into bed, in the mid-dark of the night, cuddled up as close as he possibly could, wrapped his arm around my neck, said, 'Hi Mommy. Mommy, hi.' in the incredibly sweet, sleepy way he has of saying it that makes my heart get all warm and melty soft, and fell asleep. In the morning he gave me a good, long hug as if to say, 'I was mad at you last night, and I know you were mad at me. But we're okay.'<br />
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My heart rebuked me. How could I have been in such a dark place last night?! Look at the joy I have at my fingertips! Look at this amazing life!<br />
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Today I was driving around with Damek and he turned the cd player on. Adam had popped in an old cd he had found, something I loved. A song came on I hadn't even remembered existed and it just hit so hard. It's called Family Man, by Andrew Peterson. If you want to listen to the whole thing, you can find it <a href="https://vimeo.com/1428169" target="_blank">here </a>. It's all about how becoming a family man is so different than the life he had thought he wanted. And how beautiful the differences are. One stanza I needed to listen to over and over. It says:<br />
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And everything I had to lose,<br />
Came back a thousand times in you<br />
You fill me up with love<br />
Fill me up with love<br />
And you help me stand<br />
'Cause I am a family man<br />
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Gah! It's so true! That selfish girl inside me I've always battled with, she likes to rear her head sometimes. But the fact is, my life is so much richer because of all I've had to let go. And I have to tell her:<br />
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This was not my plan<br />
It's so much better than<br />
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Tonight I took Asher to small group again. I didn't want to. I remembered how hard last week was and I remembered all the mistakes I made and how impatient and tired I was and how tired I was this week and I thought, 'Let's just not go there again.' But Asher looked at me with big tears welling up in his eyes after Adam and the big boys left. And he said to me, with his voice trembling, 'Go church? Go church, see Daddy?' And I knew, deep inside, that the reason I didn't want to go was because of my own stuff, not because it would be best for Asher, so I said, 'Sure, Buddy. We'll go to church.'<br />
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He was so happy he could not stop dancing for the first 10 minutes of getting there. He only lasted a few minutes into the kids' worship talk, he's been in school all day after all, but he wanted to stay. So, we went to the younger kids' room early and he happily colored until everyone else got there. The younger kids have a married couple who run their activities after the worship thought. Asher adopted the husband, sat right next to him, talked to him, showed him his artwork, and was happy as a clam. I stepped outside but hung around in case he got too tired to be a part of the program anymore but the one time I stepped in to check on him, he told me to 'Go Mommy!' and the leaders told me they loved him so much they were going to bring him home. I felt myself relaxing for the first time all night.<br />
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On the way home I was listening to an interview with a comedian I really like and she was talking about how her life has changed since getting married and having kids.<br />
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"I heard all these people talking about how making a commitment is so difficult because there are so many things you have to give up in order to get married. But that's really confusing to me because I have found that since getting married and having my kids, I have so much more than I had before. I feel like I have made it and that there is opportunity for even more, and I'm not talking about my career."<br />
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Bam! That's it!<br />
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The truth is that times of darkness will come on me and you, and we can express it but we don't have to hold onto it. And we can find the light again and we can realize what a gift we have been given.<br />
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<br />mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com0tag:blogger.com,1999:blog-395886854277065427.post-15952464774452180932018-05-09T20:51:00.000-05:002018-05-09T20:51:18.853-05:00TruthThere are times it is not easy to be on this journey. There are times when I would like to get off the train, take a hike into the woods, by myself. There are times when I can't find any Pollyanna-twist and the sun is not shining. <div>
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There are times when I want to tell the truth about how I'm feeling and how hard things are but there are so few who get it. </div>
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There are times when I have told people who hear my darkness and feel free to share the negativity they've been holding in and now feel they have permission to let out. They make my life sound like some horror movie from the 70's and I think, "Holy crap! Is THAT what you think?" And rather than getting to work through my own dark, I have to try to prove to them how much lighter it is than the darkness they're spewing.</div>
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There are times when I have told others who feel the need to MAKE me feel better without allowing me to work through the hard feelings I'm having. "Your life can't be that bad!" they seem to say, "I spent that time in college working with people with disabilities and I LOVED it!" And rather than being given permission to work through the hardness of life at the moment, I feel forced to fake the smile and the enthusiasm. </div>
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But if the truth were told, there are times. </div>
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There are times when I have had to chase my child down the street after he tries to "Go see Daddy" because Daddy is the ONLY one he wants and he is not afraid to tell me how much he does not like me. There are times when he starts to throw a major fit in the middle of the street. There are times when I have had to muscle him into our house because he will not calm down and will not choose to be safe. There are times when he throws valuable things down the stairs in his rage and I shut him in his room and we both sob on our own sides of the door. There are times when I ask God, "When is this supposed to get better?!" because I have been dealing with this new phase of absolute noncompliance and stubbornness and anger for months now and I feel done. There are times when he calms down enough to let me hold him and rock with him while he cries and cries for what seems like 10 hours straight. There are times when I cry and cry with him. There are times when I do not much like where my life is at and I can't see even a pinprick of light at the end of this seemingly never-ending tunnel. There are times when I feel envy climbing up my back like an invasive species. Envy for those whose kids are normal, who have no reason to see a doctor except for that sticker of approval, "This one's fine". Envy that there are people in the world who can plan spontaneous adventures with no thought of bathrooms or accessibility or timing or gear, all the gear. </div>
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There are times when I feel guilty even posting this because what if that one expecting parent finds this post and decides it's all too much and they shouldn't have that baby. Oh, the pressure! To always be the advocate and the good mom and the one who has it all together! Well, tonight I do not. Tonight I am just willing to speak the truth of where I am and to cry some tears and to pray for the strength to get through one more day. </div>
mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com0tag:blogger.com,1999:blog-395886854277065427.post-29644134042716395782018-03-09T10:41:00.002-06:002018-03-09T10:41:45.379-06:00Wrong FocusAsher's state-required psyc eval and IQ test came in the mail a few days ago. Adam asked me if I wanted to hear what was in it. I said, 'Not today.' Because we know what's going to be in it. We know it's going to highlight how far away from typical he is. We know it will focus on all the quantifiable ways he is less than his normally developing peers. Less than. After all, that is what we specialize in in our quantifiable tests, exams, evaluations. Finding who is less than, who is weakest. Who needs extra. We know that people with qualified book learning watched our son and checked all the book-specified qualities and found him lacking. Sometimes finding the lacking, giving the extra can be really helpful. Sometimes those lacking reading or writing or math skills can make great improvements with a little or a lot extra. But sometimes the findings just glare at you, telling you that this is your child and there is no place for him because he will never be enough. He will never live up to the productivity level our society deems worthy.<br />
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I was thinking about this as I made Asher's lunch. I angrily shoved a bite into my mouth and popped the rest in the microwave, just as Asher came running around the corner, shouting, 'Mom! Mess! Big mess!' Which means one thing, Asher made a huge mess somewhere and is coming to humbly show me his work and apologize, though 9 times out of 10 lately he refuses to help clean it. I stormed down the hall after him, in a much worse mood because of my own thoughts, and prepared to really let him have it. I am so sick of cleaning up these massive avalanches he causes! And right when I opened my mouth to tell him how I feel about this mound of junk he's dumped all together, I choke on the bite of food in my mouth. And all I can do is cough and cough and cough, so hard I almost throw up because there is a piece lodged right at the opening of my windpipe.<br />
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Asher jumps into action. 'You okay, Mommy?!' he calls as he runs down the hall. I hear water turning on in the kitchen and seconds later he comes running back with a cup of water with a straw in it. He gently hands me the cup and starts patting my back as I gratefully drink it.<br />
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I look at this boy, with tears in my eyes, partially because I had just been coughing my lungs up but mostly because I just love him. Adam had shared with me the last line of the report, 'Asher is a the same level as a 3 or 4 year old.' They don't know. They don't know his amazing emotional intelligence, how can you quantify that? They don't know how many ways he enriches this house, all the times he causes every person to slow down and choose kindness. How can you make money off of that? They don't know the love that sparkles off of him, how he makes so many smile and cheer. There is no way to put that on a checklist.<br />
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I think the school I am in with Asher is one that teaches me how to say, 'Whatever!' to the world of checklists, productivity, bottom lines. There is so much more to people than the paycheck they earn, the grades they get, and the college they attend or don't. That kid! He drives me crazy some days. He makes huge messes. He brightens my day every morning with a hug, a kiss, and a 'Good MORNing, Mommy!' And he is so much, much more than a number on a paper.<br />
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<br />mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com0tag:blogger.com,1999:blog-395886854277065427.post-84070603007212304412017-07-02T23:35:00.001-05:002017-07-02T23:35:34.629-05:00The BestOur car is dead.<br />
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The one we bought when Caedmon was born. The cute, little, micro, minivan. The one with the bumpersticker on the back that my friend from high school had made especially for us when Asher was born. The one that has carried us on every family adventure over the last 8 years. The one we just said is getting a little tight as the boys are growing but if it could just hold out a few years more, just until we pay off the car loan on the other car . . .<br />
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Nope.<br />
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It's dead.<br />
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So, we put off stressing out about it over the Sabbath. About how to rearrange all the therapy appointments and how to get me to work and Asher to school on time when we need to get there only a few minutes apart but 20 miles away. About how to come through on the promise of Adam taking Damek on a special trip this year that he turns 12.<br />
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That evening Adam was doing dishes in the kitchen and I was walking around the backyard picking up toys because we were expecting rain. I noticed a flash of purple off to the side of the yard, over behind the trampoline. I went to investigate and found violas blooming, in the middle of grass that gets mowed at least once a week. Violas! Purple violas! Adam's favorite flowers! So I called him out and walked him over there. And we sat for a while marveling at this perfect plant that somehow was blooming in our yard and we had never noticed it before and here it was, right at this moment tonight.<br />
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And I cried a little and said, 'That right there is because God loves us!'<br />
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And on Sabbath afternoon the topic inevitably came up as we were sitting and chatting with our friends. Because a car dying is a pretty big deal for a lot of us and everyone could commiserate with our situation. And one friend said, 'I want you to use my car.' Even though it would be an inconvenience for her. And another, and very new, friend said, 'We have a car sitting in our garage. You are welcome to use it. It has a cracked windshield, I'm sorry.'<br />
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And I said, 'Oh my word! I have driven with many cracked windshields! I can do it again! Thank you!'<br />
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And I cried a bit as we drove home. Because of friends. Because of unselfishness. Because of God's great love.<br />
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And then the friends showed up at our house this evening to drop off the vehicle and hand us the keys and instead of an old, dusty, cracked car, they parked their very newest, nicest family car in our driveway. And we said, 'Wait a minute! What about the car with the windshield?! That one is totally fine!' And they said something about how they forgot they had it scheduled to get the windshield replaced so they needed to keep that one and we could use this one.<br />
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And all night long I have been tearing up thinking about how they brought us their best. The BEST! And how proud I feel when I give a meager bit sometimes, the bottom of the barrel, some when I have plenty and it won't hurt. And I can't quite understand that kind of selflessness but I am trying so hard. And I know it is exactly what God gives all the time and He is giving us this amazing lesson wrapped up in these beautiful people who, honestly, don't know us that well but are willing to offer us the very best they can. And I want so much to BE that kind of person. Who will offer the best of myself no matter how hard it is.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com2tag:blogger.com,1999:blog-395886854277065427.post-36241388700634042842017-04-26T10:44:00.001-05:002017-04-26T10:44:37.943-05:00Educational FearsThis morning was Asher's transition meeting for moving into Kindergarten. I was able to meet his general ed teacher, his special ed teacher, the special ed coordinator for his new school, his new speech therapist and his new occupational therapist. His current teacher and his current speech therapist were there as well.<br />
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I was terrified going in. Scared I would have to get firm and tell these professional educators that their plan was not going to work for my child, that they need to go back to the drawing board, that they didn't know my child and they needed to listen to me.<br />
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I shouldn't have feared.<br />
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In fact, I didn't even need to show up to the meeting.<br />
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Asher's current teacher, Alli, was the one to go on and on about how wonderful Asher is, what a great addition he is to any classroom, what a helper he is. 'In 13 years of teaching,' she said, 'I have never seen such a caring, sweet, loving boy. I don't know what I'm going to do without him!'<br />
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The team listened closely to my concerns that Asher be included as much as possible in the general classroom and be given as much interaction as possible with his typically developing peers. They took notes. They gave me their email addresses in case any questions came up during the summer break. They gave me a book to read to Asher with pictures of the school and descriptions of everything so it wouldn't be so scary and foreign to either of us next September. They gave me examples of how they foster a community environment where Asher will be part of the class, friends with his classmates, rather than just a body off to the side. They told me that they are always tweaking plans and are happy to try new things to see if Asher is able to step up to the challenge.<br />
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In other words, they were a prayer answered. Exactly the team I would want working for and with my boy. I am so excited to see how he develops as a person in the coming year. I am in awe of how God has put us right where we need to be for Asher to get this help.<br />
<br />
I read and hear so many horror stories of parents going in to meetings at their schools and having to convince <b>educators </b>that their child is worthy of getting an education along with their peers. It always makes me nervous about going in for any meeting with a new school, a transition, as my kids get older. And yet, every time I have been pleasantly surprised at how wonderful the educators are, how easy to talk to, how apparent it is that we are on the same page. I'm not sure how I have gotten so lucky when I know so many others have not. I am just grateful for the positivity and determined to support any action that will make <b>all </b>schools be such welcoming places to <b>all </b>children.<br />
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One thing I have learned on this journey is how different every state, even every county is in medical care, educational supports, and assistance for people with disabilities. How can this be possible in a country as wealthy and successful as ours?! This should not be! This is why I support federal oversight. Leaving the growth and development of our children up to individual states is a horrible gamble at a time when our children need advocates to become incredible adults. I cannot sit on my comfortable chair and enjoy Asher's growth, knowing that so many in my own country are struggling because of poorly funded schools and ill-equipped teachers. Think about it next time you vote on a referendum or to place a person in political office. It truly matters!mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1tag:blogger.com,1999:blog-395886854277065427.post-57513989435088379632017-04-20T20:26:00.000-05:002017-04-20T20:26:27.032-05:00To Surgery Or Not To SurgeryEvery year Caedmon goes in to check all his functions. They check to see if he has lost anything from the previous year. They check to see if everything is healthy. They check for reflux. They check to see if things are working as they should. They check to see if he is happy with his current state of things.<br />
<br />
Everything looks great! Everything is healthy and looking as it should.<br />
<br />
This year we had to bring up the fact that Caedmon has experienced more issues between catheterizing. He takes medicine to try to tighten up the sphincter muscles. We wondered if his dosage needed to be increased. 'No,' the doctor assured us.<br />
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Our only option right now would be an irreversible surgery that would involve taking gristle off a muscle and wrapping it around the sphincter, making the sphincter more difficult to get through to cath, which would make it probable that he would want/need another surgery that would put a port through his belly button into his bladder, which could increase the likelihood of infections and also could affect the health of his bladder and kidneys.<br />
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So, choose your kid's adventure: possible occasional embarrassment/maintain health/no surgery or surgery/possibly decline in health/more chance of not standing out in a crowd in the wrong way.<br />
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I hate the irreversible decisions. I hate that there aren't any better options for him right now.<br />
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I love that he is so healthy. I love that he hasn't seemed phased by it all yet.<br />
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I want him to be able to accept what he has. I want all my kids to be able to accept what they have. I want me to be able to accept what I have. It's not really different. It's just different issues we are all trying to work through.<br />
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You are an amazing work of art, son. So you tinkle a little when you laugh or when you run or when you're nervous. You know what? A lot of people do that who have average, normally functioning bodies. You are not alone.<br />
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We think we are going to hold off on this decision and let Caedmon make it when he is older. We are so grateful for the option to wait. We are grateful that he is healthy and strong. We are grateful that in this one area we do not need to make a spur of the moment decision.<br />
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We are slowly walking in the path of 'being thankful in all circumstances' 1 Thessalonians 5:18. Some circumstances are easier to be thankful for than others.<br />
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<br />mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1tag:blogger.com,1999:blog-395886854277065427.post-69613331956651254652017-02-16T21:36:00.001-06:002017-02-16T21:36:34.994-06:00Oh! SINUSES!Caedmon and I got sick.<br />
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A head cold.<br />
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Normally not a big deal, always thankful for a cold over a stomach flu. This one seemed to hold on for days and days and days. Stuffy noses, tired eyes, achy bodies, interrupted sleep. I rarely take medicine but actually broke down and begged Adam to bring some Sudafed home.<br />
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Glory! Hallelujah! I could sleep!<br />
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Caedmon seemed to be getting better too. There were less dirty tissues to search for around his bed in the mornings. He seemed to be sleeping better. He had more energy. We sent him back to school.<br />
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Then he started complaining about headaches. Oh dear Lord! As every parent of a child with hydrocephalus and a shunt understands, as soon as you hear the words, 'Mommy, my head hurts!' your stomach tightens and you start going through the mental list of shunt malfunction. Usually Caedmon gets headaches when he's coming down with a virus, not finishing up one, so it couldn't be that.<br />
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Oh no!<br />
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We've had this shunt since he was two months old, he just turned 8. He's due. I know some people who have had 10 or 20 shunt revisions in short life spans. The luck is turning!<br />
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We sent him to school. It seemed like the headaches were going away. I stopped by his school to take care of his needs, he looked miserable. He couldn't focus, couldn't sit still. 'My head hurts, Mom!'<br />
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I popped him in the car, called work to tell them I wouldn't be in, called Adam for the neuro's number he has saved in his phone (yeah, I need to change that), brought Caedmon home to rest while we waited to hear from neuro. As I was trying to make him comfortable, he looked at me with tears in his eyes and asked, 'Mom, am I dying?'<br />
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Sucker punch to the gut.<br />
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I assured him that we would figure out what was going on and take care of it and he would be better soon.<br />
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I then had a brilliant thought that you probably already had in reading this: I needed Sudafed every day of the last 6 days, I never gave Caedmon any kind of decongestant. Ah ha!<br />
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It's been two solid days of giving him regular decongestant and this afternoon he finally said, 'Hey! My head doesn't hurt anymore!'<br />
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Okay. We can breathe again. Breathe into that knot in our stomachs. Let all the tension out of our necks. Allow God to give us that peace we've been pushing away.<br />
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Every time we go through this circus we learn a few more things, find more solid footing for the next time, learn a little more about Caedmon's body and how it operates and what it needs. By the time he's 40, we should be really, really good at this.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1tag:blogger.com,1999:blog-395886854277065427.post-18502130464690489182016-12-28T00:44:00.003-06:002016-12-28T00:44:38.147-06:00Epilepsy Too?!A few months ago I was yanked from a deep sleep, early in the morning by my husband's panicked voice calling down to me from the floor above.<br />
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'Kristin! Kristin!'<br />
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I could tell by the tone that something was very wrong. The tone and the fact that he doesn't tend to wake me up by shouting my name.<br />
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I ran upstairs and down the hall to the room our older boys share. The light was on, Adam was up on the top bunk with Damek, and Damek was in the middle of a seizure. I had only seen one other seizure before in my life, but I knew without a doubt that that was what I was seeing.<br />
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'Call 911!'<br />
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I grabbed Adam's phone and dialed. It rang and rang and rang and no one picked up. I thought I had the wrong number so I looked at the phone. No, right number. I hung up and called again. This time, someone picked up. I calmly explained the situation, while saying good morning to Asher and Caedmon. I felt completely in control.<br />
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As I let the firemen, then the policeman, then the paramedics into my home pre-5am, with my pajamas on, my hair unbrushed, my home the obvious residence of young children, it was all totally normal. I was the hostess welcoming our guests.<br />
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Damek came out of the seizure and was completely confused with why there were all these strange people in his bedroom looking at him. I held him and chatted with him and our new friends. As they saw that he was pulling out of it and would be fine, they left, first the policeman, then the firemen, and finally the paramedics.<br />
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We were left looking at each other. Quite the exciting morning.<br />
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Adam packed a bag and headed to the ER at Children's with Damek. I got the other boys ready for the day and got them both to their schools. I waited for word from Adam but it didn't come for a while. I knew it would take a while. There are always a million questions to answer and possible tests run. But I hate being the one sitting at home, waiting.<br />
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Finally, Adam called as he was dropping Damek off at school.<br />
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'They think it's epilepsy. He has a sleep-deprivation study scheduled in a couple of weeks.'<br />
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Bam!<br />
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Epilepsy. Epilepsy? Epilepsy?!<br />
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Cue the guilt. Cue all the feelings of 'What is wrong with my body? How did I fail my kids? What is wrong with me?!'<br />
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I mean, one child with a disability or a difficulty of some kind a mother thinks, 'Maybe I ate something wrong or did/didn't do something'; two kids with disabilities/difficulties a mother thinks, 'What is going on here?'; all three children with disabilities/difficulties a mother thinks, 'My body has completely failed my family! How can this be?!'<br />
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I wonder sometimes what it is like to have normally developing children. What is that like? What is it like to just think a cold is a cold and nothing else or the flu is just the flu? What is it like to go to parent-teacher conferences and just have the parent and the teacher? What is it like not to have to visit a child's school multiple times throughout the day to care for your kid? What is it like to not have multiple medications to keep straight? What is it like to watch your children make typical progression on every chart at the doctor's office? What is it like to sit back and just watch your kids grow with little to know input from you?<br />
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I really didn't even stress out about the epilepsy, I just thought, 'Well, there's one more thing. Alright, what do we need to do about it?' It just seemed right. 'Yep, that sounds about right.'<br />
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The great news is that the doctors are pretty confident that this is a benign epilepsy, meaning Damek should outgrow it by the time he turns 15. And this particular type is one that normally strikes at night, while he is sleeping and typically acts like a tingle on one side of his face. Rarely does it move to other parts of the brain and cause a grand mal seizure, like we saw that early morning.<br />
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But I am left with the feeling of failure again. What is going on? With both Caedmon and Asher the genetics counselors reassured us that it was not a genetic issue, just some random, fluke thing. But sometimes, in my weak moments, I think they must be wrong. It must be me. It has to be.<br />
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And what good does that thinking do? Absolutely none. So I allow myself my 5 minutes of pity, cry my tears, pray my anguish, stay up way too late writing it all out so I can get it out of my brain. Then I sit up straight, dry the tears, thank the Lord for the good He does every moment, go kiss my boys as they sleep, and allow myself to get the rest I need for a new day tomorrow.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1tag:blogger.com,1999:blog-395886854277065427.post-37723170578921057732016-12-14T10:03:00.001-06:002016-12-14T10:03:55.949-06:00RefreshingOnce or twice a year Caedmon has to go in to get a medical device changed out. It has been such a source of anxiety for him that what should typically be a quick, in-office procedure turns into an OR visit involving anesthesia. This time around he was determined to be brave.<br />
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'Mom, I won't push the doctor's hands away this time. I promise. I will just lay still.'<br />
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The whole trip to the hospital, Caedmon kept repeating that he would be brave, that he would just let the doctor put in the device. The whole long wait in the examining room, he kept a courageous face and cheerfully chatted with the nurse. When the doctor was running late and the nurse let him play on an iPad while he waited he was chipper and chatty. When the doctor finally came in the room and began to explain what would happen and what she was going to do, he smiled. But you could see the tears starting to well up in his eyes and the look of terror behind the smile. When the time came to actually go through the procedure, he turned to Adam and started to cry. Adam asked if Caedmon wanted Adam to hold him and Caedmon agreed. Caedmon screamed and cried throughout the few, eternal moments it took to get the old device out and the new device in but he held as still as he could, much different from previous experiences.<br />
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As Caedmon and Adam drove to school after the procedure, Caedmon apologized for not being brave. Adam assured him he was so brave and Adam was so proud of him. Caedmon asked Adam not to tell me anything because he wanted to tell me all about it.<br />
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When I showed up at his school a short while later to help him in his daily needs, he told me how scared he had been and how hard he had tried not to put his hands out and push the doctor away. 'It hurt, Mom, a lot! But it was a refreshing pain.'<br />
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(Let me just clarify but saying, the procedure actually is not painful, even Caedmon admits this when he has had some time and space to process, it is the anxiety and fear that cause him to imagine this is going to be so painful.)<br />
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His words, 'refreshing pain', kept resonating around in my brain throughout the rest of the day. That boy! I thought of how many times I have had to work through some really painful, difficult things, things I have been putting off because I didn't want to have to deal with them, and when the hard work is finally done and the relief at facing it and being on a better path sinks in, I would probably say that the pain was refreshing, it refreshed me and made me better than I was before.<br />
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I also thought of how so many parents make it their purpose as a parent to keep their kids from any pain. I never had that option with Caedmon. He was born into pain, so to speak, surgery within the first hours of life. Has that taken away from him, though? Has that hampered his growth, his spirit, his character? I would argue, it has enriched him, and me, and the whole family. Walking through every painful experience has taken away the fear of pain and difficulty. It becomes part of life, as it should be, because it is part of life, for every one of us. Keeping our kids from pain doesn't make them better people, it merely puts off the inevitable and stunts their preparedness for the rest of life. Let your kids feel pain. Let them make mistakes. Let them try and fail. Let them stumble and fall. Then work together to learn something from the experience.<br />
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Pain is refreshing.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com0tag:blogger.com,1999:blog-395886854277065427.post-15478425874830531472016-12-08T18:51:00.002-06:002016-12-08T18:54:31.173-06:00Hard And Good TimesI know I've posted before about how difficult IEP meetings can be. The focus on what my child is failing in, short on, missing out on goes against every grain of my being. Tell me what he IS doing, let's celebrate that and leave it there.<br />
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Typically IEP meetings are scheduled several weeks and sometimes even months in advance. There's lots of time to prep for it, buy a little chocolate as an incentive to make it through without crying, and talk to mentors and friends about how best to proceed. Considering Asher's Kindergarten year is fast approaching, this is one of the more serious IEP meetings and includes the psychologist who just completed his psychological eval and IQ test. So, lots of preparation would make total sense.<br />
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Except I got an email late Sunday night telling me there had been a cancellation for THIS Tuesday and would I like to meet then? I was under the misunderstanding that this would be only a meeting with the psychologist and teacher, only to go over the eval and IQ. Since I had just done that for Caedmon a few months ago, I thought it would be no problem! And then I walked into a room full of therapists and the head teacher and realized, this isn't just a quick update.<br />
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No prep time, for brain or heart. Here we go!<br />
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I am not going to outline all the bad stuff. We know he has his own developmental curve, his own way of living life and accomplishing what he needs to accomplish. He is his own drum section. And it is working for him.<br />
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The first thing every person in the room told me was how much Asher was loved. How he was a kind, thoughtful, caring little gentleman and one of their favorite students. I know they could say that to every single parent that walked in the room, but it felt sincere and heartfelt and came from all of them.<br />
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His teacher said, 'Let me tell you a story that describes Asher in my mind.'<br />
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She proceeded to tell me of how one day, a number of months ago, the teachers and therapists had an early morning parent/teacher conference. Just before school was to start, the meeting was wrapping up, but it was very heavy in the room, the parent was in tears, and no one was sure just how to close up the meeting. Just at that moment, Asher came sauntering into the room, took in the scene, walked up to the person closest to him, reached out and shook their hand, holding the hand in both of his, looking them in the eye, smiling his irresistible smile, and saying a warm 'hello'. He continued on around the circle table, doing the same for every single person at the meeting. His teacher told me, 'He just instantly lightened the mood of the entire room. Where there were tears, there were now smiles. The mother told me, "That was just what I needed." She left with hope for her own child because of what she saw in Asher.' The mother was a parent of another child with Down syndrome. She had been very upset, wondering what the future would look like for her own kid.<br />
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As the teacher finished telling the story, several of the therapists smiled and said, 'Ah, Asher!'<br />
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I was in tears, thinking about the hopelessness of that mother, something all parents with kids with special needs feel from time to time, so thankful that my little boy could be a conduit for hope and joy in her heart at such a hard time.<br />
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Every person has a purpose in this world, to bring more light into it, more love. Not more money. Not more businesses. To those who doubt the worth of children with special needs, your priorities are obviously mixed up.<br />
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Today I was on my third day of a new part time job at a nearby elementary school. As I was dismissing students, a lady came up to me. 'Are you Asher's mom?' she asked out of the blue. I assured her I was. She told me that she worked part time at his school and part time at this school. 'I thought that's who you were,' she said. 'I just want you to know, I love Asher so much! Have a great day!'<br />
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Every person has a purpose.<br />
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mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1tag:blogger.com,1999:blog-395886854277065427.post-9831337859459937822016-08-19T22:40:00.000-05:002016-08-19T22:40:07.730-05:00Essential Asher<div class="separator" style="clear: both; text-align: left;">
I have believed for a long time, since Asher was just a wee babe, that he is one of the most emotionally intelligent people I know. From an age when he couldn't really be expected to talk, even were he a typically developing kid, he would seem to sense when someone in the family was feeling upset and try to connect with them in some way: touching, holding hands, putting his face next to the upset person's face. </div>
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Since he has begun to verbally communicate one of his first phrases was, 'You okay?' And it's not just a flippant, one time, perfunctory 'You okay?' when he senses someone is hurt or upset. He says it over and over, with the person's name if he needs to get their attention, until the person gives him a satisfactory answer. If the answer is, 'No', he is immediately there, hugging, consoling, possibly tackling (if it's a brother). If the answer is, 'Yes', he moves on with whatever task he was in the middle of.</div>
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This evening was a tough-on-patience kind of time. Every one of my boys, in their own unique way, was losing it, and I, in turn, was losing it. With Asher it came to a head surrounding his pottying or lack thereof. He has recently decided he needs privacy in the bathroom but we can't give it to him completely because he may throw something in the toilet or wander around the room or pee in a corner. So, we play this game of 'Mom/Dad will stand over here, you go potty.' Sometimes it works, sometimes it doesn't. Tonight it didn't. Even after throwing him in the tub and turning on the water, which works about 50% of the time, there was no pee. But he did decide to dribble on the hall carpet, and on his uncovered mattress (waiting to be made after an accident the night before). </div>
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I felt so frustrated! And so defeated!</div>
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He smiled up at me and I did not have a ready smile back.</div>
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'You okay, Mom?'</div>
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'You okay?!'</div>
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'No, Asher. I'm not okay. I'm frustrated. Remember, potty is for the toilet.'</div>
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'Yeah! . . . You okay?'</div>
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This time closing in with a hug, 'You okay, Mama?'</div>
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'Asher, potty does not go in the hall or on your bed. It goes in the toilet.'</div>
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'Yep!'</div>
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Now putting his forehead against mine, 'You okay?'</div>
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I didn't have the energy to keep the grumpy face and broke into a big smile.</div>
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Big, slobbery kiss on my lips.</div>
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'You okay?'</div>
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'Yeah, Buddy, I'm okay.'</div>
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Huge bear hug. Any leftover tension just drained completely away.</div>
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What a gift this boy is.</div>
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<br />mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1tag:blogger.com,1999:blog-395886854277065427.post-17550092393392901342016-06-15T20:25:00.002-05:002016-06-15T20:25:23.014-05:00QuestionsWe were blessed with a gorgeous evening! Asher and I went for a walk down some pathways through our neighborhood. The air was warm and clear and all the humidity of the last few days was blown away with the thunderstorms. There were huge patches of blue sky, covered by an occasional large fluffy cloud. We walked down a path I hadn't been on since fall and was awed at the number of wildflowers nodding at us in the clean evening light. I was contemplating how every single flower is a visible reminder of God's love for us, something I had spoken about at an event just a few weeks ago, and now here was a whole meadow that felt like it had been placed there just for me, just for tonight.<br />
<br />
And then they passed.<br />
<br />
A mom. Three boys.<br />
<br />
Three boys roughly the same age as my three. All riding bikes, the mom bringing up the rear. They seemed so free, so at ease. The mom was completely relaxed. She knew her boys knew what to do and where to go. She had no fear that one of them might careen off in the wrong direction, most likely toward the busy street ahead.<br />
<br />
And it hit me hard, as it does occasionally:<br />
<br />
What is that like?<br />
<br />
What is it like to be just a regular mom?<br />
<br />
With regular kids?<br />
<br />
With nothing that makes you stand out in a crowd?<br />
<br />
What is it like to spontaneously go for a bike ride with all three of your children?<br />
<br />
What is it like not to have to plan so much ahead that it never feels like a spontaneous decision?<br />
<br />
What is it like not to have to hook up adaptive equipment?<br />
<br />
To just let the kids hop on and ride?<br />
<br />
What is it like to allow freedom to all of your children without concern for anyone's safety?<br />
<br />
What is it like for all of your children to be able to use the restroom with little to no assistance from you?<br />
<br />
What is it like not to have to do hand-over-hand cleaning of the bathroom floor for the bazillionth time that day because your child thinks it's fun to spray his pee everywhere? (Of course, she's the mom of boys so she may actually be doing that but not in my dream speculation.)<br />
<br />
What is it like not to have your day rigidly scheduled with medical procedures, therapy exercises, and personal care activities?<br />
<br />
What's it like not to deal with behaviors? Panic attacks? Spitting? Hitting? Kicking?<br />
<br />
What is it like to be 'normal'?<br />
<br />
I walked under my own personal storm cloud as I pondered that for most of the way home. Wouldn't it be nice, just once, to have that? But of course, I would still want my kids. I wouldn't want three other kids. I want MY boys, but without the struggles. But would they still be my boys? Would I even recognize them? How can you have the same of something if the things that make that something what it is disappear?<br />
<br />
I can't. I can't have my boys, my family, without the things that make my boys what they are. All the difficulty, the trials, the slog are making a beautiful something that wouldn't exist without the tough. I don't even really know completely what that beautiful something is but I see it happening. I see it transforming us into better, more caring, more loving, more giving, more open people.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1tag:blogger.com,1999:blog-395886854277065427.post-24499170567932252502016-06-09T10:03:00.002-05:002016-06-09T10:04:21.655-05:00Snapping Turtles And PredatorsThis morning as I went for a run something about the humidity in the air or the water along my route or the way the birds were singing reminded me of childhood times spending summer breaks at my grandparent's house which sat at the end of a canal off the Missouri River. I would spend whole days rowing my grandma's rowboat back and forth, jumping out of the boat when I got too hot, seeing how far down I could swim, never quite touching the bottom. My hair would bleach bright blond and my skin would turn golden brown in the sun. I would come into the house only to eat and then I would be back out again in the water. Whenever my grandpa caught sight of me he would warn me of all the dangers in the water.<br />
<br />
'Watch out for snapping turtles! They're so big they can bite your big toe off!'<br />
<br />
'Don't get too close to the river! The current will sweep you right out and we'll never see you again!'<br />
<br />
'There are some big fish in there. Some of 'em have teeth and they'll think your fingers are worms!'<br />
<br />
I would look appropriately serious at his warnings and then go jump back in the water.<br />
<br />
One day my mom called me in. She and my grandma were headed to town for some grocery shopping and she wanted me to come with them. I dutifully put on some clothes over my swimsuit and followed them to the car. We collected the things they thought we'd need for a good dinner and, while they waited in the checkout line, I wandered around the front of the store, looking at the gumball machines, coin operated horse ride, bulletin board right next to the large front doors.<br />
<br />
All of a sudden I was aware that a man was whispering in my ear. I whipped my head around, eyes huge, body tense. I knew I was in danger. It took a minute for my brain to realize what was happening. The man was dirty, greasy, disheveled. He reminded me of the homeless men our church would sometimes serve in downtown Denver. He was gone before it registered what he had said to me and what had happened.<br />
<br />
'If you ever need a friend, call me,' the man said. I looked in my hand where a tiny scrap of paper sat with something scrawled on it. He had shoved it in my hand before he took off.<br />
<br />
I was terrified. I made a bee-line to my mom. I let the paper fall to the floor as I ran. I spent the drive back to the house lying on the backseat, fearful that the man was following us and would find out where I was. I stayed awake late into the night, hearing every sound, positive that it was the man coming in through one of the open windows. But, and this is the saddest thing to me now as a mom myself, it never once crossed my mind that I should tell my mom what just happened. I don't even know why. Why wouldn't I have let her know? Why wouldn't I have asked to call the police? Why wouldn't I have shown someone that piece of paper?!<br />
<br />
Because I was a little girl who had never had any conversations about what to do in that situation. My parents, my grandparents weren't bad. They just hoped that we lived in a world where I would need to know about snapping turtles but not about predators. They wanted to believe that their children and grandchildren would not be the ones targeted, would not cross paths with dangerous people who wanted to harm them.<br />
<br />
There is something innate in children that causes them to clamp up when they should talk and the key to unlock that is adults who communicate in a way that doesn't cause more anxiety but informs. But we have to believe that our children will most likely meet people who are out to cause them harm, people they know, people they don't know. My story happened 30 years ago. I need to see that the world is not a safer place than it was then. It is horrible that these conversations are needed but they are.<br />
<br />
I thought of the <a href="http://abcnews.go.com/US/florida-mom-off-duty-deputy-thwart-abduction-13/story?id=39692599" target="_blank">video </a>of the mom in Florida whose daughter was grabbed and dragged toward the door by a would-be abductor. Thank God that woman was aware enough to jump into the fray immediately and save her daughter! If the man in my story had decided to be so bold, I would have been long gone before anyone realized what had happened. I was right next to the door. My mom was far away.<br />
<br />
Give your children love today. And talk to them. Talk to them about what to do when they feel afraid. And be a safe place for them to run to when they are afraid. Teach them that when they feel nervous or scared of an adult it is okay and to respect those feelings. Most of all, don't be afraid to talk about every little thing they want to talk about.<br />
<br />
We're going to get through this parenting thing and our kids are going to grow up to be amazing adults.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com0tag:blogger.com,1999:blog-395886854277065427.post-3738682615589392962016-06-01T14:14:00.001-05:002016-06-01T14:14:11.143-05:00The Right MotivationAsher is capable of doing a lot of things . . . if he feels like it. He loves to show his new skills as he develops, he feel so proud of himself. The smile is priceless.<br />
<br />
The adventure begins after he has shown himself to be proficient at something and decides he's bored with it and doesn't want to do it anymore.<br />
<br />
It happened with eating with utensils. 'Yeah, I know this Mom. I'm not interested anymore. You do it for me.'<br />
<br />
It happened with picking up . . . anything. 'Yeah, your songs aren't doing it for me anymore. I'll sit over here and read a book while you pick up the gazillion cars I just dumped out everywhere.'<br />
<br />
And now, it's happening with toilet training.<br />
<br />
Two months, TWO, he had been completely dry. Night and day. He would go nearly every time we sat him on the toilet. It had been amazing and beautiful and so cost effective. Then, all of a sudden, we would set him on the potty and he would sign 'all done' about 2.9 seconds later. We would sit and we would wait. We would sing the potty song, we would cheer for the pee pee to come out, all things that used to work to get him to actually do the business we are there for. But, nothing.<br />
<br />
We needed new motivation.<br />
<br />
So, we started standing up to go, something new! That worked for about two weeks.<br />
<br />
We started getting him excited about what he would do after he went to the bathroom, 'Do you want to watch a video?', 'Would you like a cookie?', 'How about going to the park?', 'Do you want to swing?' . . . 'Let's go potty first and then we will!' That worked for about three weeks.<br />
<br />
There are days where we have to make-do with the bath treatment. It's impossible to continue holding it in when you are sitting in warm water, right? Yet, somehow he still does!<br />
<br />
What is truly impressive is his determination and strength of will!<br />
<br />
Does it frustrate me sometimes, that he is so set to do what he wants to do?<br />
<br />
Oh yes!<br />
<br />
But it is also a lesson to me. Kids' opinions in general often get overlooked. But I have noticed that children with mental disabilities are stereotyped into a category of 'easy' meaning they just go along with what you want them to do and don't express their own wishes. They are happy to do what others tell them to. They don't have the mental capacity to have thoughts of their own.<br />
<br />
This is such a simplistic view! I am happy to say it is false. And I am happy to recognize the individuality of my own son. He is not a robot or a drone, he is himself. He has thoughts, opinions and preferences. He is a beautifully made human with all the uniqueness that comes with that territory. Please remember that the next time you see someone you think is just being difficult. Perhaps they are communicating and learning to control their own little corner of the world in the best way they know how.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1tag:blogger.com,1999:blog-395886854277065427.post-79707559912658483702016-03-29T20:27:00.000-05:002016-03-30T14:32:02.129-05:00Parenting Ups and DownsSometimes parenting is fun and easy:<br />
<br />
<ul>
<li>Hey kids, let's go swimming!</li>
<li>Who wants some ice cream?</li>
<li>Anybody in for a trip to Pizza Ranch?!</li>
<li>Let's go camping!</li>
</ul>
<div>
Sometimes parenting is tough:</div>
<div>
<ul>
<li>You must eat your vegetables.</li>
<li>No, you may not hit your brother when you are frustrated.</li>
<li>Bathing is a necessity.</li>
<li>Pee pee is for the potty, not your pants.</li>
</ul>
<div>
Sometimes parenting is nearly impossible:</div>
</div>
<div>
<ul>
<li>We love you just as much as your brothers. It's tough being the oldest. Yes, everyone thinks your little brothers are adorable but it doesn't make you any less wonderful.</li>
<li>No, you can't play on the playground in casts. Yes, you still need to bathe.</li>
<li>You are safe. You are okay. We will not let anything bad happen to you. I see you are very, very frightened. We will be done in just a moment.</li>
<li>No, just because 2 AM is in the morning doesn't mean it's time to get up.</li>
</ul>
<div>
I feel that I have come so far in being a better parent than I was 10 years ago. I am so much more relaxed. So okay with allowing my kids to have their big feelings and not feeling I've failed or need to join them in the ascent. Not perfect, but better and that's pretty good, going in the right direction. But I also feel that the difficulties are just beginning. The hard questions are around the bend. I am hoping I am learning enough to be able to answer well when they come. </div>
</div>
<div>
<br /></div>
<div>
Sometimes I feel hit across the chest with the unexpected. Like a few weeks ago when Damek, for the first time, started sharing how left-out he feels sometimes. How cute Asher is and how much Caedmon needs and people pay so much attention to them and not to him. Oh, man! I knew that would probably come at some point, no matter how much Adam and I have tried to fill him up with special mom-time or dad-time, lots of hugs and love. How can he not feel that way some times? And when Caedmon sometimes feels so frustrated at having no control right now, being stuck in casts with a metal bar bolted into both legs and being completely dependent on other people to do even the littlest things that he just screams, ear-piercing, heart-wrenching screams. And when Asher will do awesome with potty training one week, not one accident, telling us when he needs to get to a bathroom and then the next week he fights us, doesn't want to go at all and prefers wetting his pants, and our bed, and the couch, and the carpet.</div>
<div>
<br /></div>
<div>
I live for the times when my eyes lock with one of my boys and we laugh uncontrollably over something absolutely silly, a made up potty song, a Shel Silverstein poem, a new joke. We can just let go of the heavy stuff and be together right at that moment. What a relief that is. I used to think the best parents in the world were the ones who could afford to give their children big experiences: world travel, cool events, incredible family vacations, weekend trips to world renown places. Now I think the best parents are the ones who intentionally create moments of togetherness, regardless of financial status, house size, zip code or recorded intelligence. I hope when my boys are grown and moved on to homes and families of their own they will look back at these days with a feeling of joy and love and togetherness. That regardless of the lows we actually go through they will feel their childhood was a series of high points that led them to where they are.</div>
mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1tag:blogger.com,1999:blog-395886854277065427.post-27753630562778645532016-02-24T08:15:00.000-06:002016-02-24T08:15:16.809-06:00His Own TimeCaedmon is 7.<br />
<br />
Caedmon has sucked his thumb since birth.<br />
<br />
At 3, we were a little concerned about it. The doctor shrugged and said we could try to do something about it but it wasn't that big of a deal.<br />
<br />
At 4, we commented to him that maybe we should start working on not sucking his thumb anymore.<br />
<br />
At 5, we talked to his dentist about it and she told us he would quit when he was ready.<br />
<br />
We had already learned from potty training with Damek that kids are pretty awesome at picking their own time line so we decided to sit back and wait.<br />
<br />
At 6, he endured comments from multiple loved ones and basically told them where to get off, he loved his thumb and he would continue doing his thing, thank you very much.<br />
<br />
At 7, well, it began as any other year has. But three nights ago I noticed he was quite restless and hyper-tired, not typical for him but occasionally we all have nights. The next night was very similar. That was strange. The third night I wondered if he was coming down with some sickness that is taking forever to manifest? What in the world is going on?!<br />
<br />
Then I realized, it has been a REALLY long time since I have heard the sucking sounds of a thumb in a mouth! Could he be quietly weening himself without saying a word to any of us?<br />
<br />
I decided not to say anything. Maybe he didn't tell us because it wasn't a discussion he wanted to have.<br />
<br />
It made me tear up a bit. Watching my independent 7 year old go this struggle alone. I am so proud of him. So proud of his perseverance. He's shown it in many things in his young life. It makes my heart happy for the man he is growing to be.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1tag:blogger.com,1999:blog-395886854277065427.post-28856861527350252162016-02-10T09:46:00.002-06:002016-02-10T09:46:52.194-06:00Sometimes It's Just Too MuchCaedmon has a pretty major surgery coming up in a few weeks. His legs will be broken, by a doctor not in some rambunctious little boy play, reset to try to straighten them a bit from the way they twist now, his left foot will be reconstructed, a tendon will be completely severed to loosen his foot and stop it from turning in. His dad and I have felt this heavy weight on our chest get heavier by the day as the surgery gets closer. This kid! He has been through so much, though he doesn't really know that, it's all part of life for him.<br />
<br />
Adam and I are looking at the minimum 12 week recovery time and feeling like this huge tidal wave is just hovering above our house. Caedmon is looking forward to Grandma coming to visit. He just doesn't have the adult mind that can latch on to anything in the future and attach fear and negativity to it.<br />
<br />
And then . . .<br />
<br />
A few days ago, on a Friday, Asher and Caedmon were wrestling, as they love to do. Asher saw the CHAIT tube button on Caedmon's side, grabbed it in his little pudgy fingers and completely yanked the entire button and tube out of Caedmon's body. We heard a scream, came running, and saw the tube lying on our living room rug and a hole in Caedmon's side. Adam quickly put together a bag while I taped gauze over the opening and Adam and Caedmon rushed off to the ER. After 4 hours, they came home with a huge, long temporary tube taped in various places around his side and chest with the instructions to call his urologist on Monday. We called as early as possible on Monday and, after some calling back and forth, were told, 'Oh, we just went to grab another tube and realized we don't have anymore. We'll have to order them.' How long will that take? 'Well, we hope just a few days . . .' It is Wednesday now. We're still waiting to hear something.<br />
<br />
And then . . .<br />
<br />
Last night we wanted Caedmon to be able to bathe and we needed to change the dressing over the hole. He was so anxious that we were going to somehow pull the tube completely out of his side that he could not calm down enough to let us do it. It took Adam holding him down on the floor and me pulling tape off and putting more tape on to finally get him in the shower. He was so upset he was shaking and shivering. There is nothing worse than having your child be scared and having to walk them through the thing they are most scared of. To have him crying in my face with a look of utter terror while I calmly (on the outside) continued on with the job at hand was nearly more than I could take. We cuddled for a long time and talked through what had happened, what he had been scared of (pain), what had actually happened (no pain). I am tearing up just writing this because even the memory is so stressful.<br />
<br />
And then . . .<br />
<br />
Today Asher had his PT appointment. On Friday he had finally been fitted with new orthotics, he had outgrown his old ones. I was so happy to take him in finally and have him get a good session in with the appropriate footwear. A few minutes after him going back his PT came out and said, 'Could you come back with us?' I followed her to a bench where she picked up Asher's shoeless feet and said, 'These orthotics don't look right.' She then pointed out several problems with them that were causing Asher to twist his feet in order to walk.<br />
<br />
Quite often I am able to be a 'go with the flow' kinda person. These things are what they are and I can't change how it's happening, I can only change what happens today. But with so many things at once it feels like too much sometimes. I would like to cuddle in my bed, read a good book, get on a plane to somewhere sunny and warm, forget about mommy duties for a while, have a good cry and sit by the ocean. Instead, I will get off the computer right now so I can get to Caedmon's school in order to cath him.<br />
<br />
Meh, get-aways aren't that great anyway. All the stuff is still sitting here for you when you get back. Perhaps slogging through is the best plan. After all, it's just a stage. Also, my mom sent us some money for ice cream. I think we shall have an after-school get-away to the ice cream shop.mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com3tag:blogger.com,1999:blog-395886854277065427.post-89390440439485630972015-12-07T20:21:00.001-06:002015-12-07T20:21:46.337-06:00Waiting It OutNot very often, but there are times, when Caedmon is over-tired or coming down with an illness, when he will become extremely stubborn and oppositional and he will flail around so much and take swings at anyone near him that I will have to gently restrain him or he will hurt himself or someone else. And he will cry and sob while trying to hit or kick me. And he will scream at me to let him go. And I have to tell him that I will hold him until he feels safe again. And sometimes I have to wait for what seems like a very long time for that to happen.<div><br></div><div>These are the times I don't like being a mom much. I don't like conflict. I don't like confrontation. I don't like holding back my child. I don't like that he has these moments.</div><div><br></div><div>Sometimes I cry. Sometimes I'm just as angry as him. Usually I am tired too.</div><div><br></div><div>And then most of the storm passes, and I can let go of him and he'll let me smooth his hair or massage his arm or put my cheek next to his as his sobs slowly fade. And through the ebbing I pray in my own head. That I would have wisdom. That I can be calm. That I can show him love before he falls asleep. That he would have peace. That he would know he is loved. That I would stop making so many mistakes.</div><div><br></div><div>And then he asks me to cuddle with him, usually a little longer than on a normal night. And sometimes I don't want to stay longer but I do because it's not time to leave yet. The storm has not quite gone away. And as I lie next to him I feel his breathing slow, I feel his body relax, I see his eyes close. And as I get up to leave, he opens his eyes, lifts his arms and gives me a tight hug. </div><div><br></div><div>I love that part. </div><div><br></div><div>And I love how it reminds me of my Father who holds me through some pretty amazing temper tantrums, even at my old age. A Father who doesn't walk out when the going gets tough. Who waits out the storm with me. Who holds my hand and smooths my hair. And waits.</div>mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com0tag:blogger.com,1999:blog-395886854277065427.post-27404015675378474982015-11-20T14:21:00.001-06:002015-11-20T14:27:51.500-06:00Turning 7Caedmon had his semi-regular visit with his orthopedic surgeon a few days ago. His orthotics were extended to better fit his growing feet, he was checked over for general health and well-being, he was scheduled for another gait analysis . . . and we found out this will be the year he has a major surgery on both legs in which they will break and reset major bones as well as reconstruct some bones in his feet. <br />
<br />
'Yeah, just let us know when would be a good time for Caedmon to be wheelchair dependent for at least a month.'<br />
<br />
We knew it was coming, his orthopedist has been warning us for several years, but we just weren't quite ready for it to come now. In fact, my memory is that the orthopedist said sometime between his 8-10 birthdays, he's only going to be 7 this year.<br />
<br />
One more adventure on the journey. One more surgery. One more getting up and starting over again.<br />
<br />
We're ready for it. We love this boy!<br />
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<br />mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com0tag:blogger.com,1999:blog-395886854277065427.post-63108371237896206912015-09-30T14:45:00.000-05:002015-09-30T14:45:04.174-05:00Running at 6No parent ever knows what their child will be capable of. We can hope, dream, plan all we want but what the reality is will never be quite what we anticipated. This is true regardless of ability, regardless of the hurdles or hurdle-free life a child has.<br />
<br />
Watching Caedmon from birth, seeing how twisted his feet were, going through multiple surgery recoveries with him to improve mobility, taking him week after week to physical therapy, knowing his leg bones are rotated and will require more surgery sometime in the next few years, I decided long ago to just embrace every victory he has and let go of any expectation. I decided to encourage him when he asked to try something, to support him, to cheer for him, never to say 'never' and never to push.<br />
<br />
So when his brother asked to run in a kid's 1/2 mile fun run after a race Adam was in and Caedmon, not one to want to be left behind, asked if he could too, I said, 'Great!' And when he waffled back and forth up until 3 minutes before the race started I just held his hand and said over and over, 'Whatever you want to do is fine but I know you can do it!' 'Okay, I'm gonna do it, Mom!' he said, turning in circles, which is his way of showing excitement.<br />
<br />
Adam lined up with him at the starting line, pushing his wheelchair in case he needed it at some point in the race.<br />
<br />
When the race started, he was in the back of the pack but he was running. He would slow a bit, then hear somebody cheering for him and his pace would pick back up again. I was standing halfway down the turnaround course. When he saw me, he blew me a kiss and then ran faster to catch up with his dad. He never stopped moving and he only stopped running once to say 'hi' to Asher, who couldn't stand to be on the sidelines and jumped in the race for the last 1/4.<br />
<br />
Seeing him running brought a high-pressured surge of emotion. It was so beautiful, the way he moves his body when he runs is so fluid and graceful, like a dance, it brought so much pride, my boy, not stopping, not crying, not quitting, it brought back all the hard work he has done through the years to even be able to walk time and time again after surgeries knocked him backward. All of a sudden I could imagine what the parents of that athlete who scores the winning points at the last buzzer to win the championship game must feel or the parents who watch their child graduate at the top of the class from some Ivy League school or become president or do anything that they hardly dared to hope their child would be able to do.<br />
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'THAT IS MY SON!' I wanted to shout to everyone he was passing. I would have too, had I not been sobbing like a baby.<br />
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mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com3tag:blogger.com,1999:blog-395886854277065427.post-78390515184279495372015-07-05T21:23:00.002-05:002015-07-05T21:23:30.416-05:00Mom, Where Were You?!<div class="MsoNormal">
These are words I swore many, many years ago my kids would
never say to me. I was going to be that mom that came to everything, supported
everything, participated in everything.<o:p></o:p></div>
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It only took until the end of Caedmon’s kindergarten year
for me to break that promise.<o:p></o:p></div>
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I have so many justifications and excuses for why I didn’t
show up: Asher was getting over a sickness and had fallen asleep after an
intense physical therapy appointment, it was raining and his school said they
would cancel the event if it rained, Adam was busy all day with appointments
and was unavailable. The truth is, I could have done so many things
differently: swing by the school or at least call to see if the event was still
happening, wake Asher up after a short nap, it really wouldn’t have killed him,
call Adam to see if he had a little wiggle room.<o:p></o:p></div>
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The fact is I did none of these things and I made
assumptions. And so I missed Caedmon’s very first sports day.<o:p></o:p></div>
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As Caedmon climbed into the car at the end of the day, I see
big tears in his eyes and hear the reproach in his voice.<o:p></o:p></div>
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‘Where were you, Mommy?!<o:p></o:p></div>
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You said you were coming and you didn’t come!<o:p></o:p></div>
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I was the last one in everything!<o:p></o:p></div>
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Dash (real name) won everything and made fun of me!<o:p></o:p></div>
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Why weren’t you there?!’<o:p></o:p></div>
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Every word is a stab to my heart, manifold by my own
mom-guilt.<o:p></o:p></div>
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There was a lot of apologizing, a lot of explaining, trying
to make him understand that I love him and I support him and I will be there
for him in the future. But it doesn’t take away the hurt of the moment or the
feeling of letdown. <o:p></o:p></div>
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Not to mention the pain of losing that we can’t even focus
on yet because the pain of mom and dad missing this day is too fresh. How do I
help Caedmon see that he is an amazing kid? How do I help him see that losing
at a sports day is a teeny tiny insignificant nothing compared to all the
wonderful things he wins at everyday, like loving and resiliency and courage
and humor? The truth is I missed that opportunity because I wasn’t there, I
wasn’t present in that moment and so I missed that teaching opportunity.<o:p></o:p></div>
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And man does that hurt! It hurts so much it has taken me
over a month to actually sit down and write this blog.<o:p></o:p></div>
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But the truth is that I have made and am going to make a lot
more mistakes in my career as a mom. As hard as I will try and as much as I won’t
want to, I know I will let Caedmon and Damek and Asher down many more times in
my lifetime. Because the truth is I am just a human and being human I make
mistakes.<o:p></o:p></div>
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This is the point where I fall back again on the promise in
Romans, God will work all things together for good to those who love Him. Do I
believe God is big enough to work even my worst parenting mistakes for the good
of my children? If I don’t, then I need to rethink the god I am serving. If I
do, then I need to be willing to drop the guilt and shame at His feet and
honestly thank Him for how He’s going to take every parenting triumph and
mistake and create something spectacular for my kids and, what’s ever harder,
for me. And when the time comes that I pick up the memory again and start
rehashing my guilt, I need to be willing to carry it back to Him, drop it
again, and again, and again, until it is really gone.<o:p></o:p></div>
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I really let Caedmon down. I made a big mistake. I can’t
wait to see how God takes this and makes it into some extraordinary thing for
Caedmon, and for me. And I can’t wait to be standing right in the front
cheering him on at his next event because even mamas and daddies deserve grace
and even mamas and daddies can grow and change and improve with time. <o:p></o:p></div>
mamao3boyshttp://www.blogger.com/profile/05958516295923156924noreply@blogger.com1