Amanda Kern

My dearest Chance Matthew,
This week you got your first wheelchair. I write you as I am still coping with the thoughts of what this means for you and for our family.

In the past few months we have struggled with this decision – to give in and request a wheelchair for you. Before you were born we knew you would be born with spina bifida. We knew you would likely experience challenges with your mobility, but we prayed every day that you would be born perfect. We prayed that nothing would be wrong. We prayed that you would be able to walk. We prayed that you would never need braces, a walker, or a wheelchair. We wanted none of these things for you because before you were born we feared how we would be able to care for a child who might not walk. For the longest time we refused to think about if you would ever need a wheelchair, because to be honest – we prayed you would never need one. We’ve worked so very hard to help you learn to walk – I don’t think most realize just how tough this is for you to do independently.

We prayed by now you would be walking independently. We feel you are so close, but even with the progress you’ve made it is beginning to get increasingly more challenging to get around and it will likely always take you several times longer to walk from place to place. Something that takes an average person 1-2 minutes to walk to do, it takes you 10-20 minutes. Most people take for granted the simple act of walking…it’s an effort that is something you have to work very hard to do.

Before you were born we were so frightened by the things that might be wrong with you. We didn’t realize just how amazing you would be. Chance you have amazed us. Not just our family – you have amazed a world of people. You’ve helped me realize that my own view of perfection was so far from what it should be. You are so incredibly perfect in your own ways. I’m beginning to learn that my own view of perfection isn’t always the same as God’s perfect plan…for you – and for our family.

Now that you have your first wheelchair I find myself needing to pause to make sure you understand what this wheelchair will mean to you and to our family.

This wheelchair will not mean you will never walk independently. You’ve already wow’d us with how great you are doing with your walker and braces but we’ve begun to accept that some things take you a little longer (sometimes a lot longer) to go from place to place. There will be times we can take our time and allow you to walk and explore and there will be times we will need to resort to using the wheelchair to get to places on time.

This wheelchair does not mean we will give up on walking. We will continue to push you at home and in therapies to help you get as strong as you can possibly get. You have worked so hard to walk with your walker and we push you to try your hardest to try to walk independently. We don’t know if or when that day will happen, but we trust God’s timing and his purpose. The most we can ask of you is to continue to try to do your best.

This wheelchair will probably be fun for you but don’t ever let it be the thing that makes you wish to stop working so hard to reach your goals. You’ve only had your chair a day and you’ve already learned to do wheelies and 360 turns. We have seen your smiles and joy using your new wheelchair in the brief time you’ve had it . We are so happy this may help you have more fun and not feel held back by your mobility limitations. The laughter we’ve heard in the past day helps remind us that this wheelchair will not only help you move around as you grow but it will help empower you to do all the things you wish to do when your legs may not be able to do as much as you wished they could do.

This wheelchair will give you a great deal of independence. What we want more than anything for you is for you to grow to learn to move around independently as all other kids do. The reality is you aren’t getting any smaller and as you grow up you’ll soon be too big for us to carry – we need to make sure you begin to learn how you will be able to move around to do the things you wish to do in life.

This wheelchair will be a big transition for us all. We will begin to learn ways to push you to keep walking but will learn when you should use the wheelchair to ensure we can move from place to place without overtiring you or us. We want you to enjoy life and we want to give you options with your mobility as you begin to get older. We suspect that no matter how much you enjoy your new wheelchair that there will be times you will want to walk on your own.

This wheelchair does not mean something is “wrong” with you. I suspect as you grow older you may begin to have people who see you with your walker or wheelchair and they may ask us “what’s wrong”. For some reason society views a walker or a wheelchair as meaning something is “wrong” with a person. I recall before you born the first time I had learned of spina bifida I viewed both as a bad thing…I too feared that something would be “wrong” with you. Yes, you were born with this birth defect that has brought so many challenges into your life…but I have to say you have the most perfect soul and for that we are blessed. You keep that spirit up and continue to show the world that there’s nothing “wrong” with you…you just happen to need a little extra support moving around. This determination that you have is part of what will continue to amaze us all.

Chance there isn’t a day that goes by that I don’t wish I could find a “cure” or a way to “fix” all the challenges that have come with you being born with spina bifida. Long before you were born I wished that if you had to be born with spina bifida that we’d be spared the biggest challenges. Unfortunately the reality is we can’t make your spina bifida or it’s challenges go away…the most we can do now is support and love you and help bring you as many opportunities that will help you grow stronger and become a more independent person. This wheelchair won’t be the thing that defines who you are – but we suspect it will be something that will create an amazing new perspective for you in the years ahead. If it’s needed to help you chase your dreams, then so be it. There’s no doubt you are one determined child Chance…and surely you will achieve many more great accomplishments in your lifetime.

Continue to inspire us kiddo…we’re all here cheering you on.
Love always,
Momma