Category Archives: Special needs children

Gideon got new equipment

The past two months have been very exciting for us as certain plans have come to fruition. After much paperwork and patience, Gideon got new equipment!

Back in April Gideon received a tomato sitter with a rolling base. All thanks to Mr. Kane’s 3rd grade class and DARS. Mr. Kane’s kiddos raised money for Gideon to get this special chair back in December. But before we purchased it, we found out that DARS was going to cover the sitter and base, but not the rolling base that we wanted. So we waited on DARS (their paperwork process can be lengthy, but we are grateful). Then last month, when we got the call that DARS had the chair, we purchased the base with wheels on our own-thanks to Mr. Kane’s class.

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This sitter has been so wonderful for Gideon and our family. Now he can sit and play without having to hold himself in a sitting position. It is also great for mine and Kevin’s parents. It’s hard to carry Gideon across the house now that he’s getting so big. This allows us to roll him from room to room if we need to. He’s almost outgrown his high chair, but I’m not worried about that now, because his sitter works the same way. Overall, it just makes interacting with him easy.

Then a few days ago we got a call from our medical supply rep, Susan. She has been working her butt off (since October) to get Gideon an adaptive stroller. I’ll spare you the details, but just know that this process was (and probably always will be) grueling. So when she called us Wednesday, she was very excited to tell us that it had been delivered…just in time for our surprise family vacation next week!!  (She pulled some major strings!! Thank you Susan!!)

She brought it over late Wednesday and this is what it looks like.

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You may not be able to tell from the photos, but this stroller is AWESOME!! First of all, notice how the seating system supports Gideon? That is huge! Another cool feature is that the chair turns so that Gideon can face forwards or backwards. It also tilts AND reclines!!!! This is a great feature for me because I can change his diaper while he’s in the stroller. That means a lot since he will only get bigger and outgrow the bathroom changing stations.

Laynie is excited because the push bars lower down so she is able to push him like the big sister that she is. The stroller also came with a tray that we can use for feedings or play. Did I mention it as a zero turn radius?!?!? Seriously, it is overall amazing. The only down side is that it is harder to take apart and put in my car…mostly because it’s heavy and my “trunk” is small….stupid jeep compass, what was I thinking??

All that said, we are so grateful for these new pieces of equipment. They have already made life so much easier for us and for Gideon. I just want to say thank you to everyone who has been involved in making life more enjoyable for our son. There are so many who are involved in my little boy’s life- therapists, reps, doctors, as well as friends, family and complete strangers who just love our boy….thank you. Thank you for loving him and us well. Not every family has the community support that we do and I hope you all know that that is something we do not take for granted.

Blessings

 

Empty The Bucket

It’s nice to see you break down. It’s good to know you’re human.

A sweet friend spoke those words over me after I lost it while talking about Gideon last week. The flood gates don’t open often, but when they do….watch out! Sometimes you just got to empty the bucket.

I think people perceive that I have it all together, simply because I can talk about Gideon with little or no emotion. In fact, several months ago another friend who has a child with a disability asked me, “How do I get to where you are?”

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Truthfully, I don’t have it all together, 24/7. I hate this genetic disorder.  I grieve my son’s circumstances and the future suffering he will face. But often times, it’s not the big issues that weigh me down. Confessing those & giving them to the Lord is easy. For me, it’s the little things that get to me. I hold onto them. I’m not as quick to acknowledge how those little inconveniences affect me. I tend to bury them and just push forward. But like a bucket beneath a slow leak, the tiny drops eventually accumulate to the brim. And the bucket begins to spill, until it’s intentionally (or unintentionally) emptied.

Yesterday when Kevin brought Gideon home from the dentist, the last drop hit the bucket. Apparently brushing Gideon’s teeth twice a day, isn’t good enough because he’s on Pediasure. So now I have to brush his teeth every time he takes a bottle….Every. Freaking.Time. This really isn’t that big of a deal, but it’s frustrating because it’s just one more thing added to the list of his daily needs.

The timing for this news wasn’t ideal either. I was already upset because I was about to go pick up Gideon’s cortef prescription. We really are fortunate because he doesn’t need this medication daily, only when he’s sick. But now I have to watch YouTube videos to learn how to give my son a shot…just in case. This was not on my top 10 list of fun things to do on a Saturday. Again, it’s not that big of a deal. But it is just one more thing. One more drop in the bucket.

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Maybe you can relate. Maybe you’re in a season right now, where it just seems like one thing after another keeps dropping in your bucket. Over time, those little inconveniences add up and if we don’t handle them as they arise eventually our bucket will begin to spill over into every area of our lives. We need to be intentional and take some time to empty the bucket.

In my opinion, the only way we can be at peace in the circumstances that we face is to let go of what we cannot control & rest in the arms of the One who never leaves us (Deuteronomy 31:8). For me, I have found that when I tell God my concerns and spend time in His Word, my focus shifts from my son to His Son. And when that happens, I’m reminded daily to empty my bucket before it ever has the chance to fill up.

Have you emptied your bucket lately?

The foot of the cross is a great place to do that.

“Come to me, all you who are weary and burdened, and I will give you rest.” Matthew 11:28

 

 

 

Long Day

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Today was long…for everyone. First day of school always is for me. Sweet children with their backpacks full of supplies headed for school with hopes of seeing old friends and making new ones. Teachers rooms were as clean and organized as they’ll ever be, and parents were breathing a sigh of relief as the chaos of summer ends and everyone is back into some kind of routine. As a former middle school teacher, I miss the first day of school. Don’t get me wrong, I’m beyond blessed to stay home with my two babies! But for me, today was long for a completely new and scary reason.

My son Gideon is 7 months old. As of August 1, 2013 we found out that he has a peroxisomal genetic disorder. Every cell in the body has peroxisomes that oxidize long chain fatty acids (don’t ask me to describe this better, I taught math, not science.) Basically the body cannot function with disabled peroxisomes, which is bad news for my little man.

The day started out with a hearing test. His disorder is associated with hearing loss, vision loss, and eventually the complete shut down of the brain and central nervous system. So today he had his hearing tested to see how well he hears now. After a 3 hour test (which included fasting and sedation), we discovered that he has moderate to severe loss. But the good news was that with hearing aides, he’d be able to hear completely fine…for now.

So as I was driving home, feeling hopeful about our little man’s situation, I received a call from the geneticist. His blood work came back from Johns Hopkins and it was not the kind of news we were hoping for. She told me that there are 2 genetic mutations in his DNA and then she said we would be facing the more severe type of peroxisomal genetic disorder…Zellwegers. Sadly most of these babies don’t live past 12 to 18 months. (Insert sound of my heart shattering).

So how do you end a long day like that? When everyone else is posting first day school triumphs and happy stories of recess, lunch, and friends… how can I choose to be happy when it feels like my world is caving in? To answer in one word- Jesus. A dear friend of mine just gave me a book (and finished it in 1 day) called “Holding Onto Hope” by Nancy Guthrie. She buried 2 of her 3 children due to Zellwegers Syndrome. On her blog she said this about her daughter Hope-

“So how were praying for Hope? I wish I could tell you that I was a great woman of prayer in those difficult days. The truth is, I wasn’t. I was really grateful that so many people were praying for us, no matter what they were praying, because I didn’t have many words, mostly just groans and tears. I was grateful to know that the Holy Spirit was interceding for us with “groans too deep for words” (Romans 8:36). When I was able to sputter out a prayer, it was shaped most profoundly by something a friend said to me on the phone a couple of days after Hope was born. She said that I could be confident that God would accomplish the purpose that God had for Hope’s life in the number of days that He gave to her. So in my prayers I began to welcome him to accomplish that purpose. I prayed that my own sin and selfishness and small agendas would not hinder his purpose. I prayed that his purpose for Hope’s life would be enough for me, even a joy to me.”

Does that last line get to you like it did me? Have you ever considered praying that something like this would be a JOY in some way? As hard as it is to believe, I completely understand why she would be praying to that end. When we first heard “peroxisomal genetic disorder” on August 1st my husband and I had an amazing heart to heart moment. With tears still streaming down our faces, we both agreed that any children we have don’t belong to us anyways. They’re on loan. They are a gift from God and He loves them so much more than we do. Knowing that, we can trust He will work it out for good. (Romans 8:28) For whatever reason, God allowed Gideon (whose name fittingly means Mighty Warrior) to be born this way. Any plans I have for him will fall significantly short compared to what God will do with his life; no matter how long it is.

I’ve always heard happiness is a choice. It’s so true. As I write about my long day, I’m very aware that my “feelings” about this can send me into a pit of despair, anger and self-pity. Like Job, I could be asking God a thousand “why?” questions. But I wasn’t there when He laid the earth’s foundations (Job 38:4). Nor did I hear him tell the oceans they “could only come so far” (Job 38:8) No, I’m going to choose differently. I’m going to remember that “my hope is in You, Lord” (Psalm 146:5) I’m going to pray for the “peace that surpasses all understanding” (Philippians 4:7). And I’m going to remember that “His grace is sufficient” (2 Corinthians 12:9).

So would you join me in praying for my son? Not that Gideon would be healed (although I’m confident that the God who created the universe can do that!), but that God’s will be done…that he would use Gideon’s life in a MIGHTY way to impact the world.  My husband recently said, “If Gideon’s life brings one person to Christ, saves one marriage, or gives one person a renewed hope…then this is all worth it.” (How lucky of a wife am I?)

Choosing to be happy, even after my long day.   🙂