Monday, December 7, 2015

Waiting It Out

Not 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.

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.

Sometimes I cry. Sometimes I'm just as angry as him. Usually I am tired too.

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.

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. 

I love that part. 

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.

Friday, November 20, 2015

Turning 7

Caedmon 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.

'Yeah, just let us know when would be a good time for Caedmon to be wheelchair dependent for at least a month.'

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.

One more adventure on the journey. One more surgery. One more getting up and starting over again.

We're ready for it. We love this boy!


Wednesday, September 30, 2015

Running at 6

No 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.

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.

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.

Adam lined up with him at the starting line, pushing his wheelchair in case he needed it at some point in the race.

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.

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.

'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.


video

Sunday, July 5, 2015

Mom, Where Were You?!

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.

It only took until the end of Caedmon’s kindergarten year for me to break that promise.

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.

The fact is I did none of these things and I made assumptions. And so I missed Caedmon’s very first sports day.

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.

‘Where were you, Mommy?!

You said you were coming and you didn’t come!

I was the last one in everything!

Dash (real name) won everything and made fun of me!

Why weren’t you there?!’

Every word is a stab to my heart, manifold by my own mom-guilt.

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.

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.

And man does that hurt! It hurts so much it has taken me over a month to actually sit down and write this blog.

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.

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.


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. 

Friday, May 22, 2015

The Greatest Is Love

One thing Damek really struggles with is knowing how to interact in positive ways with people, especially when he thinks he is right and the other person is wrong. Especially when the other person is his little brother. One thing Damek really needs is someone to come alongside him and explain and model what are appropriate ways to interact with people. One thing Damek really hates is to be wrong. He has been known to adjust facts in order to appear right when he is found to be wrong. And so we have started to teach him based on 1 Corinthians 13:1-3:
 If I had the gift of being able to speak in other languages without learning them and could speak in every language there is in all of heaven and earth, but didn’t love others, I would only be making noise. If I had the gift of prophecy and knew all about what is going to happen in the future, knew everything about everything, but didn’t love others, what good would it do? Even if I had the gift of faith so that I could speak to a mountain and make it move, I would still be worth nothing at all without love. If I gave everything I have to poor people, and if I were burned alive for preaching the Gospel but didn’t love others, it would be of no value whatever.
The repeated phrase usually goes something like this: Damek, when you are rude you are wrong, regardless of whether your facts or right or not. How can you say what you're saying in a way that is not rude or mean?

This usually gets us into a lively discussion because, as previously mentioned, he hates to be wrong. And some days he will try again and do a fantastic job of rephrasing what he's saying and some days he will get frustrated and agitated. But we keep trying. That's all we can do as parents, teachers, adults in the lives of kids, just keep trying, keep modeling, keep repeating. Don't give up.

I have met people in real life and on-line who I wished had had someone in their lives to teach them these basic principles. John Viscount Morley once said
You have not converted a man because you have silenced him.
Yelling louder, being ruder, taking over, showing physical aggression does not make one right no matter how correct that person's view might be. And it does not teach or earn converts, it simply makes what one has to say of no value whatever.

Of course, as parents we can be guilty of this kind of behavior ourselves. Sometimes when I am dealing with a 3 year old who has his own thoughts on what needs to be happening right now or a 6 year old who is asking a million questions to avoid a consequence or a 9 year old who is questioning every decision I make in a day, the easiest thing to do is to yell louder, be rude, take over, be physically powerful. The hardest thing to do is to take a step back, regroup, try again, use love, and continue to show respect even when I have to be firm.

And if that is so hard for me to do as an adult, how much harder for a 9 year old with a learning disorder? Maybe I should have said 'one thing that we both really struggle with'.

Saturday, April 4, 2015

A New Part To The Journey

There are a lot of doors open and a lot of love given to well-behaved, slightly precocious, somewhat outgoing children. You know the ones. The ones who know when to speak and when to sit looking adorable. The ones who will interact with strangers in appropriate and cute ways. The ones who are helpful and caring from birth.

There is a smaller but strong community of love surrounding children who have obvious physical disabilities or markers of more common, better known diagnoses. Perhaps these people have a family member or friend or person they worked with at some point and when they see one of these children their hearts are touched. There are some who have a kind of romanticized idea of what raising a child in this category would be like and so they are attracted to them.

But what if your child is none of the above? What if your child is the one who blurts out the wrong things at the wrong time? What if your child is the one who talks constantly about things that interest no one but them? What if your child is the one who neighborhood children hide from and whisper about behind his back? What if your child is the one who looks perfectly normal but the more time someone spends with them the more they realize there is something not quite right and they slowly withdraw until they are gone all together? What if your child is the annoying one, the rejected one, the lonely one? What if your child is the one to draw out the innate cruelty in the children around him? What if THAT is your child?

What if that is my child?

Damek is a beautiful, intelligent, verbose, big-hearted, loving boy. He is very aware of how people feel toward him. He is very sensitive to the vibes people put off. He is very sensitive to stimulation. It has been heartbreaking to have him come to me and tell me that a certain person doesn't like him and know that it is true because I have watched interactions and seen for myself how people will recoil from him and not know what to say. I want to make it better and I can't.

A year ago we received a diagnosis for Damek, Non-Verbal Learning Disorder. We had known for quite some time that there was something a bit different about Damek, that he was very unaware of social norms, that he was anxious, that he struggled to be able to connect with his peers and preferred to be with adults or much younger children even though he wanted very much to be liked and accepted by everyone. We knew it wasn't ADHD, were pretty sure it wasn't high functioning autism. We hoped it was just a high IQ, being gifted can mimic many of the same symptoms as these other diagnoses. We dragged our feet at getting him evaluated. For me, the thought of having all three of my kids labeled as different, less than, not average felt like too much. But eventually we knew we needed to figure out what was going on so we could give him the tools to succeed.

So we scheduled him for a multi-day evaluation. There was an IQ test, computer tests, object tests, observation, questionaires. And when it was all over we knew that Damek was extremely smart, 97th percentile on the IQ test, and that he was struggling with a learning disorder. When the psychologist sat down with us and explained what the learning disorder was and how it manifests itself there was a certain relief. 'Yes! That is Damek! That is absolutely accurate!' And there was a little grief. 'Yes, That is Damek. What does this mean?!'

It has been a journey just to come to an acceptance. I have a stack of books on my nightstand pertaining to raising a child with Non-Verbal Learning Disorder and I cannot get past the first few chapters. It all still seems so overwhelming. I know we will find joy in this journey as we have with the journeys we are on with our other two boys but it is hard to get started.

My prayer right now is that in putting this out there it would make people stop a moment and think before they judge a child or his parents when they see a child acting outside of the norm. That maybe it will help someone teach their child a bit of empathy and compassion and help them see that sometimes people are born with some extra hurdles they have to jump over. Don't we all deal with difficulties? How can we help each other through them rather than making them harder by hard hearts and cruel words?

I'm just a mama, crying softly as she types this, hoping for a little more love, a little more softness in the world.

Sunday, March 15, 2015

Dreaming

Last night I had a really vivid dream. I was sitting in a coffee shop or something similar, waiting for an amateur night to start. It was a special night for people with spina bifida to get up and share their short stories, poetry, music, whatever. The first person to stand up was a young lady who started to read us a story of her life. One of the things she mentioned in passing as she read her story was that she still lived at home with her parents. From that point on I couldn't hear anything else. Her voice was drowned out by all the people around me commenting:

'Did she just say she lives with her parents still?!'
'She shouldn't still be living at home!'
'She should be moving out, living her life!'
'What is she thinking?!'

In the dream I was looking around at all the people talking around me, no one listening anymore to the girl, all lost in their own judgments on what she said.

Then I woke up.

I spent a long time pondering what the dream could mean. One of the strongest things that came out in my own mind was that as soon as she had said one seemingly innocent comment, everyone stopped listening. No one was listening. People were so caught up in their own thoughts and critiques about one minor point that no one was listening.

How often do we do that? Do I do that? One thing gets us up on our soapbox and away from people, and we start talking and stop listening.

Her point had nothing to do with living with her parents, it was a side-note, a simple nothing, but people grasped it and would not put it down again. In their minds that was the whole point and that one thing summed up who the girl was and what her worth was and nothing else mattered.

I see this quite a bit in social media. So many of us get ahold of our pet topics of contention and we cannot let it go and we blow up even the simplest, smallest statement as a personal attack.

And then again, we love to assign negative intent on everyone and everything that we don't take the time to understand. Considering my dream, I thought about the number of times people have said rude or nasty things to someone about having a parking permit for special needs parking spaces or made judgment calls about someone based on outward appearance without ever taking the time to understand any part of the person's circumstances or life.

It is so important to gain understanding, to clarify, to LISTEN. Take some time to really listen today. We may just be amazed at how our stance may change just by opening up our ears a little more and our mouths a little less.

Wednesday, March 11, 2015

A Day In The Life- What Living With Down Syndrome Looks Like


The joy that is radiating off Asher's face in this picture is the perfect illustration of what it is like to live with a child who has Down syndrome on a daily basis. Yes, he absolutely has bad days, yes, he gets frustrated and angry sometimes, yes, he is human but he exudes a joy that spreads to every person he comes in contact with. From the people in the grocery store who are greeted in every aisle with a wave and a 'hello' to the children in the waiting room at the therapy office who are blown a kiss as they head on their way to an entire church who is offered his hand to shake as they exit the sanctuary to his family smothered in hugs and kisses it is impossible to spend five minutes with him and not feel uplifted.

There is so much more to life than financial gain or academic success. Asher teaches all of us that a life can enrich so many just by existing, just by being a part of the world around them. Our society can have such a narrow view of what is important or what matters, expand it a bit and get to really see and know those who have much more to offer than the puny list of import we've been taught.

#lifewithds

Sunday, February 22, 2015

Manuscripts And Emotion

I haven't updated the blog in a very long time. This is mostly because I have been very busy rewriting my blog entries for an upcoming book. I have agreed to a deal to sign over my blog rights in order to get the material published as a parenting book for those caring for children with special needs.

I will still update the blog, it won't change the material and there won't be any other writers joining in, it will still be our family update center, just more people may be checking in on us. In the meantime, please think of me and lift me up in prayer as I struggle through some of the heavier memories and stories and try to put them on paper in a meaningful and useful way.