Whenever I had my first child, I subscribed to one of those sites that sends you emails once a week about your baby’s progress. It was a wonderful tool with Laynie because she was always doing more than what the site suggested. So naturally when Gideon’s due date got close, I set up the automatic emails again.

When Gideon arrived into world, every doctor suggested something was wrong, but no one could diagnosis him. So like most people in my situation, I was in a bit of denial. Around month three of receiving those emails, I found myself weeping every time I read them. He was so far behind already and I just couldn’t handle facing that truth. I quickly realized those emails were dragging me further into a pit of despair. But it wasn’t until we got Gideon’s diagnosis (at 7 months old) that I actually  unsubscribed from the site. It was so nice to open my inbox and not be reminded of what my child wasn’t accomplishing.

Interestingly enough, I continued to randomly receive those emails; they usually came about every other month. Most of the time I chose not to read them, and would again go through the process to unsubscribe. Nevertheless, they kept coming and eventually I began to read them again. But this time I noticed that I was receiving these emails when I was already having an emotionally rough day.

This morning I chose to sleep late and in doing so I missed my quiet time, didn’t have time to shower, and had to rush to get Gideon to therapy. We got stuck in traffic and as I sat there frustrated, I opened my email and this was at the top of the list.

I showed this to my husband and we just laughed. Gideon may never do any of those things and if he does, we are certainly a long way off.  Satan will bring us down by any means necessary, won’t he?  All the more reason we need to be on alert. 1 Peter 5:8 says, “Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour.” 

I’m very aware of my weak areas. I think that’s why I continue to randomly receive these emails. Satan loves to attack my thoughts and emotions. In fact, I remember after Gideon turned one, I started volunteering in the church nursery every other month. This wasn’t a bad thing, but Satan used it as another reminder of what my child was not able to do. After all, kids Gideon’s age were already walking and he couldn’t even sit up on his own.  I realized that unless I daily developed my relationship with the Lord, I will be at risk of falling back into that pit of despair. John 15:5 says “Whoever abides in me and I in him, he it is that bears much fruit, for apart from me you can do nothing.”  

And that’s the truth isn’t it? Apart from God we can’t do anything. I can’t daily raise a child that I know someday I will bury, apart from God. There’s just no other way to make it through another day.

I feel the need to close by saying Gideon is who God made him to be… and that’s hard for people to understand. I’ve wrestled with that truth myself. I wish I could tell you that I knew the answer. The fall of man, free will, sin…. there’s lots of probable explanations. But not even the righteous man Job received a reason for his suffering, so why should I?

Truthfully, we’ll never know this side of Heaven why Gideon has to suffer with this disorder. But I can promise you this, God will redeem his circumstances. (Romans 8:28) And God will be glorified because Gideon’s life will reach the masses. And as Satan seeks to destroy me by any means necessary,  I will tell the story of God’s all sufficient grace until there is no breath left in my body…and I too will do so by any means necessary.

It’s been almost 2 years since we last visited an orthopedic specialist at Scottish Rite. We were originally referred shortly after Gideon was born because his toes were significantly curled in. (His big toe almost touched his littlest toe!) The doctor then didn’t seem too worried about his feet and suggested everything would straighten out once Gideon began to bear weight.

This past Wednesday we had a follow up appointment just to see how Gideon’s feet were progressing now that he’s starting to bear more weight during therapy. The doctor gave a great report and even suggested that Gideon doesn’t need his AFO’s (the braces that go in his shoes). That’s great news because Gideon hates them.

During the appointment we were able to ask about an economically friendly stander (aka: one that doesn’t cost thousands of dollars) for Gideon. We didn’t know this at the time, but the hospital has a loan program. And since they didn’t have the stander, they loaned us a type of walker for Gideon to try out. (See photo of above.)

We’ve used it a handful of times since Wednesday and unfortunately we will probably be taking it back sooner rather than later. Since Gideon has no vision there’s no real desire to make the walker go. But that’s not really our biggest concern.  Because Gideon has such poor muscle tone and almost no fat, we are concerned about skin breakdown (pressure sores); especially around the area where he has a sacral dimple.

The black piece you see in the photo is really meant to “catch” kids if their legs buckle when walking. Unfortunately, Gideon uses it more like a seat and there’s not much support for his skinny, little-old-man-like booty.

We were fortunate that the hospital also loaned us a tumble form chair and tray!!

We have a tumble form chair that ECI had loaned us, but it didn’t have the proper straps to hold Gideon in place nor did it have the tray. I’m most excited about these two items, because they provide lots of options for us. Trying to play with Gideon is often times difficult. I’m usually holding him and a toy, all while trying to get him to manipulate the toy. Now I can sit both down and work with Gideon on reaching for the toys on his tray. We’ve been loaned these items for 6-12 months, at which time we can return them or ask for a loan extension.

I’m hoping to meet with a rep from Freedom Designs before Christmas. I really want to get Gideon his wheelchair. I’ll keep you updated on how all that goes!!

We are very thankful for so many blessings as we head into the holiday season.

For my Laynie:

I don’t know all special needs siblings, but I do know quite a few.

And I think it goes without saying, special needs siblings are special too.

You have an unique perspective- that only suffering could bring.

You can turn the darkest season into the brightest, most beautiful Spring.

You are patient and so kind- you do more than you’re asked to do.

You take on way more responsibility than typical siblings have to.

Your needs often come second, and though it is truly unfair-

Rarely do you complain, and you always show Gideon you care.

With him your sense of normal is definitely somewhat skewed.

But in place of society’s normal, God’s giving you a new view.

But as mature as you are for a child, you don’t yet fully know the cost.

To have a brother like yours…someday you will understand loss.

And when that dreaded day comes, we will try to explain to you why…

Sometimes God allows children to be born sick and then to die.

We’ll never fully know why we were chosen for this story.

But I can promise you one thing, it will all be for God’s glory.

People will be changed because of what your brother is going through.

But how you show him compassion, will transform their hearts too.

You love him without condition and unknowingly, you light the way.

Your example is one we should follow each and every single day.

I thank God for you both and for the bond I can’t quite explain.

To be a special needs sibling, what joy in the midst of such pain.

Love always & forever,

Mom

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelation 21:4