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

This past Tuesday we attended an event called Baby’s Day Out. However, this was no ordinary Baby’s Day Out… It was for the visually impaired babies. As you can tell from the photo above, Gideon had an outstanding time. I would caption this picture with the phrase, “This is the greatest day eveeeeerrrrr!!!!”

And it really was a great day, especially for me…and not just because they served us Olive Garden (although I’m a HUGE fan of carbs). They had great speakers, great vendors, great resources, and most importantly GREAT volunteers who played with our kiddos so we could learn and fellowship without the constant interruptions. Which means for the first time since becoming a parent, I savored my food while enjoying the adult conversation at the table. (Lord knows I need more of that!)

In fact, I was so deep in the conversation that I forgot to take photos of all the toys and vendors. So in the pictures below they were already starting to wrap it all up.

One sweet family on their way out let Gideon try their son’s wheelchair/stroller (I’m not sure which it really is), and Gideon looked so cute in it!!

Hopefully we can get him fitted for his own wheelchair soon. (He’s outgrowing his car seat carrier and his current stroller doesn’t provide much support for his tiny, low tone frame.)

I’m so grateful for Region 10, ECI,  DARS and all the other three letter services out there. They do such a great job supporting us with resources for our special needs kids. Events like Baby’s Day Out for the Visually Impaired are wonderful because they provide fellowship & community (which is HUGE no matter what you’re going through).

I met some amazing moms and dads who have some phenomenal kiddos. These babies and their parents have been through so much. Many of the kids, like Gideon, had multiple disabilities. But besides the visual impairment, they all have one thing in common- they are all such happy babies. The room was filled with so many beautiful smiles, and so many hearts full of love & joy.

I’m convinced that these are the children that change our world. They inspire everyone they meet because they remind us all just how selfish we are as individuals & as a society. They teach us to be humble and grateful, and in doing so, we begin to find ourselves free from the chains of selfishness. And when that happens, our hearts are liberated to fulfill our calling in this world- to serve one another in love.

You, my brothers and sisters, were called to be free. But do not use your freedom to indulge the flesh; rather, serve one another humbly in love. Galatians 5:13

What an honor to be around such mighty life changers at Baby’s Day Out.

Gideon Update!

We have had lots of doctor appointments recently and we still have quite a few more going into December; so I wanted to let you guys know about some of the results that we have recently received.

Last month, Gideon was in the hospital for a virus. The urine test and nasal swab came back normal. But their biggest concern was that his platelet count was low, 85K. (Normal is in the 130’s.) The hematologist then asked us to come back in a few weeks for a follow-up blood test, to see if his count had improved once the virus was gone.

That appointment happened yesterday and Praise Jesus! his counts are in the normal range!! His hemoglobin levels were still slightly down (11.5 is normal and Gideon is at 11.2), but the doctor thinks this is normal for Gideon given his diagnosis. My only complaint was that they had to stick him twice to get enough blood. And when they pricked his foot, it left a slash (it’s like he moved when she stuck him). Needless to say, his finger and foot were bruised to a deep purple color and I’m so glad we don’t ever have to go back! Little G was discharged from their office with a clean bill of health!!!

Well, clean for him.  😉

We also had a follow-up ABR (hearing test) on Halloween. The results showed his hearing is stable; meaning Gideon has not lost anymore hearing since his last test!! This is also very good news!! We have a follow-up with his audiologist later this month to pick up his new ear-molds.

Next week is crazy. Gideon is going back to Scottish Rite Hospital to see about his feet and what his future looks like in the way of standing/bearing weight. Also next week, we are going to see a wellness doctor close to home who is interested in learning more about Gideon and his genetic disorder…not sure right now what that will look like, but we are excited that doctors are interested in knowing more about our little guy.

And finally, in December we will see his ophthalmologist and endocrinologist. I’m anxious to see the endocrinologist as many of our PBD kids suffer with adrenal insufficiency. I’ll  keep you posted as those appointments take place.

We feel extremely blessed with all this good news and we appreciate your prayers as we continue to navigate this crazy life with our Mighty Warrior.