Monday, December 16, 2013

ENT Does Not Mean Ent

Warning: Lord Of The Rings reference in title.  This post actually has nothing to do with Lord Of The Rings, it is merely the ramblings of a tired parent.

As if on cue, the night we heard from the sleep clinic Asher started gasping in his sleep and waking up crying in fear.  This has happened every night since.  So, when we called to set up our consultation session with the doctor in charge of the sleep clinic and they told us the first opening was in mid-February, we were understandably concerned.  After we explained to them what has been happening, they put us on the top of the 'Cancellation Wait List'.  So far, his appointment has been moved to mid-January.

The nurse at the sleep clinic made sure to tell us that Asher won't die in the night because of these gasping fits.  For some reason this was very reassuring to Adam and served to freak me out.  Not sure why the difference there.  Maybe it has something to do with Adam always being the one to see the worst case scenario right from the start and me being a bit on the optimistic side; he had already seen all the things that could happen in his own imagination while I was tripping blissfully along thinking it'll stop sometime soon.

Anyway, we've learned that if we can get into him as quickly as possible when we start hearing the gasping start, he won't cry and will fall right back to sleep.  It's a little hard to do at 3 or 4 in the morning when we're really groggy but we're getting it down to a science.  He also seems to be getting used to it and has been able, on occasion, to fall back asleep after an episode with little to no help from us.

Last week, when I was sitting in on Asher's speech therapy appointment I talked to the therapist about our concerns and what's been happening.  She recommended a local doc who also works at Children's, an ENT doctor who has seen a lot of the kids connected with the therapy office.  He can see Asher at the end of December.

The ENT appointment will just check the obstructive sleep apnea.  We still will need to get in to the sleep clinic to check his other apnea and the REM sleep he is missing out on.

That is all the update I have for now.  Caedmon continues to chug along and heal. His energy is back and he is as rambunctious as he can be with a full leg cast on. You can't keep that guy down for long.


Thursday, December 5, 2013

Sleeping Is Good

Yesterday we learned that Asher has mild forms of two different kinds of sleep apnea.  They are mild enough not to be troubling to the doctor.  What is of greater concern is that he is not able to get into and stay in deep sleep.  Asher seemed to want to confirm this by waking up and staying up for 3 hours last night.  There is some question as to whether the environment and condititions of the sleep study itself played a roll in the lack of REM but we have a consultation scheduled so we can get some questions answered and find out what we can do to help him SLEEP!  It is a really good thing, Asher, if only you would realize it!

Asher continues to make leaps in his development.  He is standing a lot more, signing more, making more varied sounds and curious about everything.  A few days ago he surprised us by climbing up into a kid chair and then standing up on top of it, holding on to the stair rail behind it.  Not safe, but it's nice to see him showing initiative in exploring. :-)

Today, he heard the noise of our neighbor's snow blower.  He got himself right up on that chair and started shouting hello to him and knocking on the window.  He was pretty proud of himself.  Now, how to keep Curious Asher from hurting himself in all his curiosity.


Wednesday, December 4, 2013

Snow Therapy

Caedmon continues to heal.  He meets with his orthopedist tomorrow to get a hard cast.  His energy improves daily, as well as his appetite.  Each day he's commented less often about pain and last night was his first solid night of sleep.

A few days ago we celebrated Caedmon's birthday.  He wasn't sure he wanted to celebrate but finally decided presents would be okay.  He didn't care for the chocolate cake or the special dinner we made, poor, recovering body, but we scored big on a remote control car that can run into anything and keep going.  God bless the makers of that car, it keeps him happy for large chunks of time and I don't have to chase it down and fix it a million times a day. :-)  He's also been playing with legos, painting, setting up fights between Superman, Sullivan (from the Monsters movies), a babydoll and Christmas mooses and making me lists, mostly of E's, O's and C's, for shopping.

We've been figuring out how to go about our day with a less mobile boy.  It definitely slows our day down a bit and our regular routine has needed to be tweaked.  It has been a good mental stretch, getting creative with life.  One thing we could not miss, playing with snow.  Caedmon loves snow, especially throwing snowballs.  It snowed on his birthday, thank You, God, and this morning we woke up to even more.  So, after breakfast we wrapped his leg up in plastic, laid some towels down and brought the snow to him.  He made a snowman and threw lots of snowballs.  He loved it!



Saturday, November 30, 2013

Heading Home

After a night of fitful sleep, snatches here and there that maybe added up to 2 hours total, we are awaiting our discharge papers.

The nurses came in every hour to hour and a half. Caedmon woke up every time. He was always polite but at one point he said to a nurse, 'I keep trying to sleep and you keep waking me up.'

This morning Caedmon said to me in a sad voice, 'Mom, I hate surgery. I don't ever want to do this again!' 

Me too, Buddy, me too.

This morning he had had enough. The nurse tried to get him to take one last dose of medicine. He would not do it. I tried all the tricks that worked through the night, he would have none of it. We tried holding him down and squirting it in his mouth, (yeah, I'm tired too), he spit it out all over. Then, the nurse tried to put one last dose of iv meds through his iv only to find out quickly that it had closed off since they had disconnected it from the main line at 5am. It caused quite a bit of pain, and added insult to injury. 

Poor guy!

He is now sleepily watching a movie while we wait. I'm hoping we are sent home before he falls asleep because I really don't want to have to wake him.

Recovery time upcoming.


Friday, November 29, 2013

Post Surgery

Caedmon's surgery went well! He struggled a little coming out of anesthesia but once he shook off the grogginess and nausea he was his normal, sunny self. 

Adam took Caedmon to the hospital and stayed with him until he woke up and was taken to his room. Adam then drove home and I jumped in the car to head to the hospital. 

When I came into Caedmon's room he greeted me by saying, 'I like surgery, Mom!' as he munched on some broccoli. According to the nurse, the broccoli was his idea. The young man taking his order kept pushing sugary stuff and meat. Caedmon said he needed broccoli and grapes, though he did agree to a chocolate cupcake. :-) He told the nurses he couldn't eat it until he had finished his broccoli. All after Adam left and before I got there. What a kid!

So, now he's resting comfortably, watching Toy Story. I'm encouraged that we are in a different section of the hospital, a very quiet one with our own bathroom, and I am hoping for a chance of sleep tonight. 

Happy Sabbath, everyone! Thank you for your prayers!


Thursday, November 21, 2013

Whatcha Gonna Do?

On Tuesday we learned that Asher's kidneys are no worse and no better.  He has not had an infection in quite a while so his doctor is happy to wait and see.  Any infections will mean schedule surgery, any worsening will mean surgery, but we will see what the next 6 months brings.  

A fun side note to Tuesday's urology appointment was that for some portion of time Asher had to be strapped to a table and cathed so they could record how his kidneys responded to a dye they put in his body.  He was not so thrilled with this set up and started signing 'stand up' to Adam, over and over, with the sound 'uh'.  We didn't even know he knew that sign!

Thank you, radiology department, for being the catalyst for Asher to show he knows so much more than we realized.

Tuesday night, Adam took Asher in for the sleep study.  It was going to be me with Asher but since Caedmon's surgery was scheduled and we try to swap hospital overnights, it got to be Adam.  Lucky me.  

Apparently, a children's hospital sleep study lab is filled with people who don't know how to handle children who move in their sleep.  Go figure.  It also employs people who start patting your child's bottom when they start to move in their sleep and are surprised when the child wakes up and cries to see a stranger hanging over them patting them.  

What?!  

So, Asher slept for 3 hours, from 8-11 pm.  The nurse/orderly/medical assistant woke him up at 11 and Adam got the wonderful experience over the next 3 hours of rocking Asher to sleep, lying him down in the huge, industrial crib with sides that squeak terribly when you pull them up into place, having the medical staff rush in (because they had a video camera on and could see when Asher fell asleep) to fix all the wires and reposition things, having Asher wake up because of all the bustle and people touching him, and starting all over again.  At 2 am Adam finally said to one of the staff, 'This is not working.'  She agreed, they unhooked everything from Asher, and Adam and Asher got home around 3.  

We were told it would be two weeks before we heard the results of the test.  We don't have any idea if Asher slept long enough to tell anything.  The funny thing is that one of the reasons we wanted the test done was because he wakes so easily and seems to have trouble getting into a deep sleep.  Don't you think people working in a sleep study lab would be prepared or have experience with that?  So odd.

So, we're not sure where to go from here but await any news.

Tuesday, November 19, 2013

Caedmon Update

Caedmon and I will be spending Black Friday in or near the operating room.  Please think of us as you decorate for Christmas, go shopping or eat leftovers.  Better yet, bring us some leftovers! Hahahaha!

With all these procedures on top of the other regular items on our plate, I've been feeling myself becoming overwhelmed with all of it.  It's amazing how God shows His all-knowing powers in moving us slowly where we need to be until we are in just the right place at the right time.

For months He's been showing me the importance of stillness and silence in His presence.  He's been speaking to me that busy-ness in ministry is not an excuse for not taking that time away with Him. He's shown me multiple times in the last few weeks that I am human and I need to embrace my human limitations, allowing myself the rest, recuperation, and reflection time I need.

Last night, before bed, He brought to mind one of my favorite passages of scripture, one I had completely forgotten about for years.  It is from Isaiah 30:15:
This is what the Sovereign Lord, the Holy One of Israel, says, "In repentance and rest is your salvation, in quietness and trust is your strength, but you would have none of it." (NIV)
Pretty appropriate for modern life.  He tells us exactly how to be saved from the craziness of this life and exactly how to be strong and yet we don't listen, I don't listen.  The next few verses God goes on to talk about how Israel would get so worked up that many would run in fright from one person, all because they would not rest and be still.  I think of how often I stress out about things that are not worthy of my energy because I have not allowed myself time to take it to God.  The passage ends with this powerful reminder:
 18 And therefore the Lord earnestly waits, expecting, looking, and longing to be gracious to you; and therefore He lifts Himself up, that He may have mercy on you and show loving-kindness to you. For the Lord is a God of justice. Blessed (happy, fortunate, to be envied) are all those who earnestly wait for Him, who expect and look and long for Him; for His victory, His favor, His love, His peace, His joy, and His matchless, unbroken companionship! (AMP)
Wow!  So much in that verse!  You could unpack it for weeks, like the most amazing Christmas present ever.  But right now, I am just clinging to the fact that He doesn't give up.  He just earnestly waits for me because He really wants to show me grace and mercy and love.  So I'm entering this time of medical busy-ness with the heart to be still and the promise of peace in the midst of it all.

Monday, November 18, 2013

Hospital Time

Tomorrow morning Asher and Daddy will head to Children's Hospital to have imaging done on his kidneys and to have a chat with his urologist.  This is a recurring procedure as his kidneys continue to remain enlarged and our doctor is hoping they will eventually correct themselves as he grows instead of having to resort to a surgical solution.

Tomorrow night Asher and Mommy will head to a different hospital so they can hook Asher up to a million different wires and have a sleep study done.  They are looking for Obstructive Sleep Apnea and hopefully a solution to help him sleep more peacefully at night.

In other Asher news, he has started cruising everywhere and walking holding onto Mommy or Daddy's hands!  This has been totally exciting!  Today in PT he walked in a walker much cooler than the one in the picture all the way around the entire building.  He was pretty tired by the end but it was so awesome to see.  The walker in the picture was sent home from his EI PT.  He enjoys it sometimes.  Like when he gets to chase his brothers or walk to Mommy for a hug.


In Caedmon news, we are waiting for the date for his next surgery.  His ankle has been swelling and bruising for several weeks now, which means he cannot walk or stand.  You can imagine how difficult this can be for an active 4 year old.  While Mom and Dad don't relish the thought of sending him off into the operating room again, at least we will be heading in the direction of returned movement and healing.  It will be so nice to have him on his feet again.  It should be an 8 week healing process after the surgery is completed, if all goes well.  And then, we'll get to see Ms. Carrie again and start building those muscles back.



Wednesday, October 16, 2013

The Woes Of Motherhood

Based on a true story:

If a mom notices a dirty floor chances are she's going to want to clean it.  She'll throw the toys in the toy box and go get the vacuum out of the closet.  When she pulls the vaccum out she'll notice that the canister is full, so she'll go to empty it in the trash can.  When she gets to the trash can she'll notice that it is completely full.  So, she'll pull out the full trash bag and take it out to the dumpster.  On her way to the dumpster, she'll see the baby pulling all the toys out of the toy box so she'll pick him up and put him in his highchair.  When she gets him in the highchair she'll notice that he's hungry so she'll give him a little snack and a cup of milk.  She'll hear a strange sound coming from the hallway so she'll investigate.  She'll discover the dog, digging into the trash bag she left sitting in the hallway.  So, she'll pick up the scattered garbage and make a second attempt to make it to the dumpster.  When she comes back in from the dumpster, she'll notice all the shoes and socks thrown around the entryway.  She'll tidy the shoes and take the socks to the dirty clothes basket.  She'll notice the basket looks rather full so she'll take it down to the laundry room to throw it in the washing machine.  When she walks in the laundry room she'll realize the lightbulb is burned out so she'll search through the drawers until she finds a bulb.  When she finally finds the stepladder, out in the backyard, under the swingset, and gets the lightbulb changed, she hears her preschooler calling that he's hungry.  So she'll head back to the kitchen, give the baby a little more to snack on and start making lunch.  As she's making lunch she'll realize the trashcan has no bag in it. So she'll put a new bag in the trash can.  A new trash bag will remind her of the therapy appointments her kids have that afternoon and that she needs to pack the bag. Hurrying to the kids' room to grab the bag, she'll trip over the vacuum cleaner.  Which will remind her, there is not enough time in the day.  And who cares about dirty floors?!

Saturday, October 5, 2013

October, Be Aware

October is both spina bifida awareness month and Down syndrome awareness month. I celebrate the fact that I get to be a parent of some pretty awesome kids and a part of two amazing worlds I never would have been associated with in a self-chosen life, and I ponder how much I have changed for the better because of it all.

I want to say this because sometimes I catch the look in someone's eye when they see me out in public or meet our family for the first time.  It's a look of pity, sorrow, horror maybe.  They speak to me in a quiet voice, like one reserved for a morgue or supporting a friend whose been through something terrible.  "What's wrong with your son?" they may say, pointing in the direction of Caedmon. Or a quick glance at Asher and then a turning away, as though he's something scary or contagious and if they look too long they could catch it.

It's so important for me to say, in as many ways as possible, that the people you see who are different, walking crooked, using a wheelchair, having unique facial features, are people who laugh and cry and love and hurt.  They have good days and bad days, they have people who love them and maybe people who treat them terribly.  They brighten the lives of everyone who takes the time to get to know them and they are not pitiful and their lives are not sad and there is nothing horrible about their existence.  In other words, they are people.

My prayer is that, because you have read a bit about my family, the next time you pass a person in the grocery store, at the park, on the street, who looks different from you, you can put a genuine smile on your face, look them in the eye and say, "Hello!  How are you?"  And really care to hear what the answer is.  Because the only way you are going to be able to break out of the box of able-ism that our society puts all of us in is to actually take the time to interact and get to know others.  And when you do that your life will be transformed into a much more beautiful, colorful, lively and joyfilled place.




Thursday, July 25, 2013

Summer Camp

We spent a week this summer hanging out with the campers at Camp Abilities, a special week offered to people with disabilities by our church camp. Adam was invited to be the camp pastor and bring the family along. We've been wanting to go for a number of years but this was the first time it worked out with schedules. 

It's amazing how experiences in life change you so much. There was a point in my life when I would have been terrified to spend a week surrounded by people with various disabilities. Crazy! Now I was just excited, to have my kids join in camp life, to be with people who look a lot like my kids, to try to show them love in some small way.

It was everything I had hoped it would be. Caedmon got to ride a horse for the first time, and rode one every day we were there. Damek caught his first fish and loved it so much he went back several days in a row. My active, very energetic boy fishing! Both older boys got to shoot arrows and, after reading Robin Hood, that was a highly anticipated activity.  Asher rode on boats and loved all the attention he got from campers and staff alike. We all loved splashing in the water and canoeing.


There was so much to enjoy: the weather was amazing, I didn't have to cook or clean up for a whole week, heaven!

There was also some unexpected pain. Being able to raise our children from small, adorable babies is such a grace-filled plan. I was not prepared to be surrounded by adults with Down syndrome and observe their varying degrees of ability and disability. It was a small window into what Asher will look like. I was not ready to see him like that. He's still my little one. There is still so much unknown, so much hope of what might be.

And then I started to worship with the campers. Every morning and evening Adam gave a devotional talk. And every evening and morning the campers would enthusiastically respond to every song, every question, every story, every mention of Jesus. 'Oh, I love Jesus!' 'Jesus is a good guy! He's a good guy!' Their utter abandon and openness to speak the Name and sing His praise was awesome. And I don't know if you've ever had the ability to sit in a room full of people who happened to be born with disabilities and hear them sing about heaven but I could barely stand the beauty without breaking down into sobs. It put everything into perspective.

That's what hope's all about, my friends. Not the temporal promise of 80 short years here but the eternal promise of body and minds made new, complete and whole in Christ. It leaves me free to love my children as they are and let my grief lay at the feet of Jesus.

Monday, June 10, 2013

Hard Days

There are days when it is easy to accept the road we are on, easy to just go with the flow, easy because I focus on how beautiful my kids are and how much fun it is to get to know them.

Then there are moments when it pretty much just sucks that my kids have to be different, that things that come so easily for a normally developing kid are so much work here. Moments when it feels like somebody took a knife and plunged it into the deepest part of my heart. Moments when my son looks at me with tears in his eyes and asks me to help him and I can't. In the moment there is nothing I can do. I can't make the (expletive) trike pedal straps work, can't keep his feet on the pedals, can't will his trike to work so he can go riding off with the neighborhood kids, can't make his wheelchair look like a bike so he can fit in. I feel so helpless and frustrated and angry and fiercely protective.

Today, I hate spina bifida. I hate the issues in our world that make spina bifida a part of life for so many people. I hate that my child has this. 

And, yes, I know all the Ms. Mary Sunshine (apologies to those named Mary) phrases and sayings, meant to make the people saying them feel better for having said something but making the person having the big feelings feel stupid for expressing themselves.

The truth of the matter is what it is right now. Having a child with special needs encompasses all aspects of the emotions and frustrations and triumphs and heartaches that come with it. Today at this moment is a crappy day. A little later I will hug and kiss my child and make blueberry pomegranate juice with him, we'll patch up his baby doll with some kisses and fake patches and he'll head out to swing with a huge smile on his face.

It's all part of the journey.



Monday, May 20, 2013

Family Update

I haven't updated in a while and the kids are changing like kids do, so it's about time I get with it!

Damek is wrapping up his first grade year.  His school was in charge of the church service a few weeks ago. Damek played bells, was a character in a puppet skit, and helped with a memorized dramatization of a scripture reading.  The teachers in his school gave a brief blessing for each of the children in the school, talking about what each child's strengths are, what they enjoy doing, and what they want to do in the future.  It was very special.  Damek is a really awesome kid!


Caedmon finally has his custom-built wheelchair.  I haven't been able to snap a picture of him in it yet because he's not so sure about it.  He has taken it for test drives around Costco, Cubs and Target.  I think he'll be ready for summer fun. We also received a bike that attaches to the back of an adults bike, for kids just learning to ride.  Some friends had it sitting in their garage and didn't need it anymore so offered it to us.  Caedmon LOVES it!  He has been on as many bike rides as he can talk us into taking him on.  His face, his squeal of laughter brings so much joy to us.


And one more Caedmon update.  This spring he started running!  I just cannot believe the stuff this kid accomplishes!  We were quite ready to accept that there are things he will never be able to do and running was definitely on that list.  He proves all the time that we cannot write him out of anything!  To see a video of him in action, click this link: http://youtu.be/0I8v5CJDegs

And, Asher.  This little buddy is doing so much lately.  He's been trying out word sounds, so far we've heard, 'Hi there!', 'Hi Mom!', 'Dad', 'Get this', as well as some more, less recognizable words.  Anytime he hears music he starts singing, loudly.  Yep, he definitely fits in this house! 

He's been signing 'more', 'eat' and 'all done', waving for 'hi and 'bye'.  

We've been working hard on getting him to use his leg muscles.  He has a little walker his Early Intervention PT brought and has started scooting backwards in that.  We work on climbing stairs, sitting in a big boy chair with feet on the floor, kneeling to play, anything to get those leg muscles working.  Yesterday, for the first time at home, he stood for a few minutes to play in the lego box that he normally doesn't get to touch.  All about motivation!


Friday, May 3, 2013

Straw cups and little victories

A while back I posted about our struggle with drinking out of straw cups. Sometimes I can be a bit on the melodramatic side because it took us all of 3 intensive days before he got it. He's been a happy sucker ever since. But tonight we had another victory. Instead of picking up the cup and hurling it over the side of his high chair he actually picked it up and put it to his lips . . . and drank! That is a great victory and definitely worthy of cake or something. I happen to have a freshly made pan of brownies so if you would like to stop by and have a celebratory piece we would love to have you, just don't look too closely at the house and it's colorful toy decor.




Friday, April 19, 2013

April Showers

If April rain showers bring May flowers, what do April snow showers bring?

I believe we have become numb to snow falling from the sky well past the start date of spring.  We may faint if we ever hit 60 degrees.

We are enjoying being able to make snowmen and snowballs and snow forts.  All winter long Caedmon was disappointed time and again by snow that was too dry or too cold to smush together in a ball.  No more!  Spring heavy, wet snow has answered his prayers.


This is the snowman Chewy.  We built him a week ago, during our last snow storm. He didn't want arms because he had a tummy-thing, as Caedmon explained to me.  

Let me tell you, Chewy is a heavy guy!  It took all the strength I had to get his body ball on top of his bottom ball, while Caedmon giggled at my facial expressions.

Here's the view from our back deck last night.  We had gotten about 5 inches in 5 hours.  3 more fell through the night and we woke up to a call from the school to let us know it was a snow day. 


A native Minnesotan once explained to me, 'We don't ever say things are good.  We say they are not too bad.' So, this spring is not too bad, could be better.

Wednesday, April 17, 2013

Timely Conversations

The last few days I have been thinking of and praying for the city of Boston and all the victims and their families and the perpetrators, that they would be struck by fear and awe of God and that they would be caught and held accountable.

It is difficult for me not to obsess over tragedies.  When I read too many details the emotions can swirl in my brain for days, rendering me a little less present for my family.  So, I have had to put a personal ban on clicking on all the headlines that come across my screen.  I look to see if the criminals have been caught, then I pray and let it go.

Tonight at supper Caedmon asked why we do communion at church.  'Why do we say we're eating Jesus' body and drinking His blood?'  he asked quizzically.

So I tried to explain that it was meant to be a reminder to us.  A reminder that Jesus came to earth, that He took all our bad stuff on Him, that He died, that He rose again and that we have this great and awesome hope that we will see Him again and go to heaven.  I said, 'It's easy for us to forget things sometimes.  We can feel sad or bad about bad things going on.  He knew we would need a reminder that good is going to happen forever even if bad is happening for a minute here.'

That was a very good message for myself.  I could hear God's voice speaking that same thing to my heart as the words came out of my mouth.

A minute later Caedmon said, 'I can't wait to go to heaven!  When Jesus comes to get us in His big cloud, I'm going to (his voice dropped to a whisper) touch Him (as he reached out and gently took my hand)!  And we should bring Him a lunch!'

The thought of my sweet boy standing next to Jesus, holding His hand, handing him a lunch because He must be so tired coming all the way from heaven almost made me burst into tears.  My next thought was of the woman in the Bible who fought through crowds to touch the hem of Jesus' cloak, and was healed the instant she touched him.  That was pretty emotional too.

So, tonight I will pray for Boston and I will pray that Jesus comes soon and I will thank Him for placing my children in my life to remind me of the hope we have and His light through them shining in my darkness.

Thursday, March 21, 2013

Happy World Down Syndrome Day!

This is a special day.  A day to share with the rest of the world that a diagnosis of Down syndrome does not have to be scary.  It doesn't mean that your family is going to be taken away from, as in no longer 'normal' or no longer hopeful or no longer having high expectations, rather that your family will gain from, as in joy, light, excitement, love, compassion, empathy, a fuller life.

The statistics are staggering.  Only around 10% of those babies identified in utero as having Down syndrome live to see their birthday.  Most of the 90% are aborted.

As a mother of a precious, amazing baby boy who also happens to have Down syndrome, I feel it is my job and duty to spread the word that these babies, these children, these people have so much to give.  Their lives are worthwhile.  Our world is a richer place because these children are in it.

 The theme for this year's World Down Syndrome Day is 'Who I Am'.  Take a moment to get to know someone in your community, your church, your family who has Down syndrome.  It's amazing how things are much less frightening when you are able to put a face and a name to them.

This is Asher.  He has Down syndrome.



And he's ready to party on this World Down Syndrome Day.  Anyone want to dance?


Wednesday, March 13, 2013

Of Water And Poop

Tonight we began Phase 2 of Caedmon's bowel management program.  It was another lesson, in a long line, on how the key to parenting is not that my children look/act/behave like other children but that they are as independent and self-sufficient as they can possibly be.

That must be the weight I carry with my amazingly special kids.  I'm wanting to let go of it.  Letting go of the need for them to, for whatever reason, end up not needing to be too different, not too special.  If he could just poop on the toilet like most other people then it would make everything else seem better.

It helps to have a pediatrician who speaks candidly, 'Look, this is the way it's going to be.  He'll need another surgery when he's 10 or so but it will totally change his life to be able to do this on his own.'

Yeah, but he was supposed to not need these things.  He was supposed to be the one that was that medical miracle.  The one that you read about in all those forwarded e-mails or Facebook stories.  We prayed and his body just miraculously changed and now he doesn't need any surgery ever again!

Except, that's not really how those stories turn out.  I mean, you see a snapshot of someone when something wonderful happened but the truth is that even those people grow old, their bodies start shutting down, things quit working how they were supposed to.

Because everybody gets old, eventually.

And everybody needs more help, eventually.

And everybody has to learn how to navigate through life with as much grace and charisma and chutzpah as they can muster with the abilities and limitations they have at that particular moment in their life.

And some people can do it, really well, and some people fall flat on their faces.

And the amount of physical or mental ability or disability has nothing to do with whether they will be graceful or klutzes, what matters is do they have the tools, have they learned what they need to learn to do what they can to the best of their ability. 

So, my son can poop because we put a balloon into him, shoot some water up into his colon and wait for it all to come down.  He's never going to experience a potty training party.  But we sure as hell celebrated every time we heard a kerplop! tonight in the toilet.  He doesn't know what it's like to push until something comes out.  But he enjoyed me leaning down with him and putting my arm around him to make sure he was leaning enough, putting enough pressure on his tummy to get things moving.  He said I was looking out for him.  The rest of the time on the toilet, whenever he needed to 'push' he'd ask if I could 'look out for me again'.  We would lean down together, our heads touching, my arm around his back, his giggle-breath on my cheek, and we'd wait for the sound of water or poop.  Then we'd sit up, give each other a high five, regardless of what came out and wait for the next time to try.

Monday, February 25, 2013

Oh Honey Bear

Let's say you spend a shocking amount of money on a special straw cup that is supposed to help your child develop straw sucking abilities that are supposed to help him succeed in many other areas of life even though the cup is basically a recycled honey container with a straw stuck in it.




And every time you try to use it your child does this:

video

And you can't push it because you don't want it to become this horrible experience that will forever make straws an evil monster that makes your child scream for Jesus to come whenever he sees one.  So, you do what parents always do to get their kids to do stuff they don't want to do, make a game.

video

I'll let you know if he ever actually sips out of the straw, in fact I will have a party and you all will be invited.  But until then, I count it as a very wonderful success that he put the straw in his mouth.  Did you see that?  Straw in mouth? No tears? THAT is a great success.


Friday, February 1, 2013

Asher's Baby Dedication

Last week we celebrated Asher's first birthday and Grandma visiting by having a special service to bless Asher and dedicate ourselves to depending on God to give us the wisdom and love and grace we need to raise Asher in the best way possible.  

We chose a special Bible verse, Genesis 12:2- I will make your name great and you will be a blessing.  We chose a special song, Committed singing Unstoppable (listen here www.myspace.com/committed6music/music/songs/unstoppable-83687550).  

Our friend, Jeff, gave a little talk about Asher, Down syndrome, love, grace, and blessing.  Grandma gave the children's story, all about how we are God's jewels, and said a special prayer of blessing over Asher.  I sang a song that was really meaningful to me in this journey thus far.  Damek read the scripture.  And Adam preached that God loves us so much He sings over us,

The Lord your God is with you,
    the Mighty Warrior who saves.
He will take great delight in you;
    in his love he will no longer rebuke you,
    but will rejoice over you with singing.  Zephaniah 3:17

Afterwards, we had lunch with friends and family who were able to make it.  It was such a special day!  

As people were leaving, and hugging, and offering encouragement, it was amazing to me how many people told me that they pray for us everyday.  Our little family.  That is a very humbling thing to learn.  And praise God, we need the prayers so much!


Listening to Grandma tell the children's story.

My mom will not love this picture but I had to get one of her telling the story. Hee hee!

Damek wanted to do the scripture reading.  First time up front by himself and he rocked it!

Grandma giving a special prayer of blessing over Asher and the family.

Jeff giving a special prayer for the family.

Me, trying not to choke up singing a song for Asher.

Tuesday, January 22, 2013

One Year

Today Asher turns a year old.

All morning long I've been surprised at how emotional I am about the events from a year ago, surprised at how I'll remember certain things when I look at what time it is and remember what was happening last year at this time and surprised at how much can change in such a short space in a life.

There were moments, a year ago, when I didn't know how/if I could love Asher like a mom should love her child.  There were a lot of dark thoughts in my head and a pretty heavy weight on my heart.  I felt so horrible that I had somehow done something to our family that would negatively effect my other children because my body had put together a baby that was going to need more than other babies.

A year ago, I didn't know what Asher was going to be like, what personality traits he'd have, how social or aware he would be.  He slept for the first two weeks of his life almost nonstop.  He barely seemed human to me.  I had no eye contact with him, no acknowledgement of connection or life.  He was this tiny, slumbering statue.

A year ago, I sat by myself in a hospital room and cried while my husband followed an ambulance to a children's hospital 30 minutes away and my other two children were cared for by almost complete strangers.

A year ago, I hooked myself up to a machine to try to start getting milk flowing so that whenever my baby woke up there would be food waiting for him.  Little did I imagine I would be doing that for a complete year.  8 times a day, for an entire year.

A year ago, it was the most amazing, beautiful, incredible, terrifying, exhausting, dark day.

I gave birth to my baby in my home surrounded by my family and some amazing women.  Then the bottom dropped out and I went for a freefall.

I'm grateful to be able to acknowledge these emotions and be able to just say it so that I can enjoy today.

Today, my baby turns a year old.

Through the last year all my fears, all my concerns, all my doubts have been completely blown away by the breath of grace and love.

Today, Asher laughs, he yells, he sings, he crawls, he smiles all the time, he eats . . . a lot, he plays, he loves, oh how he loves!

And oh how his brothers love him.  I have seen them grow in astounding ways, become more compassionate, more empathetic, more aware.  And oh how his mommy and daddy love him.  This once sleeping babe has awoken so much light in our home, not just opening our hearts to him but to the whole family and to every person we meet.  It is an amazing gift!

Happy birthday, my darling wonderful son.  Every year I will celebrate the gift I got on your birthday, YOU.


Birthday boy!

Tuesday, January 15, 2013

Asher's Dedication Service

All our friends and family in the area are invited to join us on January 26 for Asher's dedication service.  

The dedication service is a time for Adam and I as parents to vow before God to raise Asher with all the love, grace and wisdom we can and a special time to give Asher a life blessing.  It will be part of the regular church service.  We will have a lunch afterwards for friends and family.  

If you're interested in coming please PM me and I will send you the information.