Part of a New Family

We just got back from a conference for families of spinal muscular atrophy. We were not looking forward to the long drive to Minneapolis and going to something we wished we weren't a part of.  Another father we met there said its the club that no one wants to be in. But we are and after being with these other amazing families our hearts were really changed and lifted. I think before I was afraid of Luke not only dying, but living also. Would he be happy living with such a severe disability? Would other kids tease him and stuff like that. I found out these SMA kids are confident and happy and full of life. Watching them drive around in their power wheelchairs just having a blast made me so excited for Luke's life. They are social and bright and love life despite being so different. We heard from lots of adults with SMA that have done so much with their lives and are glad they are the way they are. We connected with families that know exactly how we are feeling and we are so encouraged. We even met parents who had lost a child to SMA that still come to the conferences and raise money for research and encourage other families going through the same thing. We really aren't alone. We can do this. We went there with heavy hearts and feel lighter now. Hopeful. I'm so grateful to God for bringing us there. He knew we needed the support and connections we now have.  Now we just need to get Luke some wheels!

Luke swimming with Max, also type 2 sma

Luke loves the water. Its one of the best therapies for his muscles.

Livi loves playing with her Daddy. She's such a sweet sister to Luke and the best at making him laugh. 

Thoughts and Pics

When we found out about Luke last November it didn't feel real. I grieved alot. Nothing in my past compares to how difficult this season of my life is. I had always struggled with some anxiety, problems sleeping, worry. But all my previous worries didn't compare to finding out my baby has a degenerative condition. I know anxiety is so normal for most people.  It almost feels wrong not to worry. But the scripture clearly says not to be anxious about anything! Everyday I have to choose either fear and anxiety or peace. Its so hard not to think about the future, what condition Luke will be in a year from now or how I will manage it all. SMA progresses differently for each child so no one can tell us what to expect. Luke has a weak cough so even a little cold could become very serious for him. So many things I could be anxious about. Here's a scripture that is my prayer right now:
Teach me your way O Lord and I will walk in your truth; give me an undivided heart, that I may fear your name. Psalm 86:11
 Everytime I worry my heart is divided. So I'm learning to take captive my thoughts and stop right in the middle of an anxious thought and remember my God has it all under control.  Its feels like a battle to trust him, but I will keep at it. I want my heart to be undivided to Him.

Here's some pics of Luke in his special equipment.

 This wonderful stroller was donated to us and Luke loves it. We go on lots of long walks and its been such a blessing to have a supportive chair for Luke.

This is Luke in a stander. We are borrowing this one right now and will need to get our own eventually. Luke is in this twice a day for 30 min each. Its good for bone density. Luke likes it.

These are Luke's special shoes he wears in the stander to keep his feet and ankles straight.

Cough assist machine. Not fun at all. Every night we have to use this machine on Luke. The mask covers his nose and mouth and blows air into his lungs and then sucks it out. The purpose is to expand his lungs and will be really helpful when he has colds to clear mucus.

The U sitter is a fun seat for Luke. He loves pushing his cars on it and it makes him work on sitting up.

The Beginning

I'm not a big writer, but I decided to start a blog to help me share and vent all my struggles right now. Its been hard lately.  Our son Luke was diagnosed with spinal muscular atrophy last November and since then our world has changed drastically. SMA is a degenerative muscular disease with no cure. Luke never rolled over and still can't sit unassisted. Crawling or walking won't ever happen without a miracle. We believe in miracles and still pray for healing all the time, but we know God uses everything for a purpose. When we got the diagnosis it broke our hearts and it still hurts. Whenever I see a child his age and remember what he should be doing it breaks my heart all over again. But Luke can say mama and dada. He can laugh. He can breath and eat. Some kids with more severe SMA can't even do those things without machines and tubes. I'm so grateful for the time we have had with him and I'm learning more and more each day to trust that God is in control. People tell me all the the time that when they try to imagine what I'm going through they feel that their life is so blessed. I totally understand that because healthy children are such a blessing! But I feel like my blessing just looks different and has different challenges. Luke is my blessing and he's perfect to me.  Someone told us about a poem about raising a child with disabilities when Luke was first diagnosed and it really describes how I feel.

WELCOME TO HOLLAND 
by 
Emily Perl Kingsley. 
c1987 by Emily Perl Kingsley. All rights reserved 

I am often asked to describe the experience of raising a child with a 
disability - to try to help people who have not shared that unique 
experience to understand it, to imagine how it would feel. It's like 
this...... 

When you're going to have a baby, it's like planning a fabulous vacation 
trip - to Italy. You buy a bunch of guide books and make your wonderful 
plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may 
learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your 
bags and off you go. Several hours later, the plane lands. The stewardess 
comes in and says, "Welcome to Holland." 

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm 
supposed to be in Italy. All my life I've dreamed of going to Italy." 

But there's been a change in the flight plan. They've landed in Holland and 
there you must stay. 

The important thing is that they haven't taken you to a horrible, 
disgusting, filthy place, full of pestilence, famine and disease. It's just 
a different place. 

So you must go out and buy new guide books. And you must learn a whole new
language. And you will meet a whole new group of people you would never have
met. 

It's just a different place. It's slower-paced than Italy, less flashy than 
Italy. But after you've been there for a while and you catch your breath, 
you look around.... and you begin to notice that Holland has 
windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all 
bragging about what a wonderful time they had there. And for the rest of 
your life, you will say "Yes, that's where I was supposed to go. That's what 
I had planned." 

And the pain of that will never, ever, ever, ever go away... because the 
loss of that dream is a very very significant loss. 
But... if you spend your life mourning the fact that you didn't get to 
Italy, you may never be free to enjoy the very special, the very lovely 
things ... about Holland.