I've got such an amazing story for y'all today.
One of the women I went to school with my entire life just found out her 7 month old son has a terminal illness.
Obviously, that is not the amazing part.
The amazing part is how she is reacting to this news and how she is choosing happiness, despite the circumstances.
Here is Gideon's story...
Everyone has a story to tell- a story that makes or breaks you; it becomes a life-defining moment…it tells the world whether or not you’re the person you claim to be. I have many stories, but none so defining as the story of my mighty warrior, Gideon.
Gideon was born full term on January 18, 2013. He was taken by C-section because the cord was twice around his neck and he couldn’t descend. Every day we spent in the hospital they found something else wrong with him; just to name a few- large fontanel, sacral dimple, VSD, aortic pinch, deformed feet, failed hearing test (twice), couldn’t hold his temperature, jaundice, wouldn’t nurse, & abnormal cry. And of course, none of these added up to something they could diagnosis.
So from the time we left the hospital until now, we’ve bounced around every specialist you can imagine…cardiologist, two ophthalmologists, retinal specialist, neurologist, otolaryngologist, and audiologist. My son has been for two MRI’s, two EKG’s, one EEG, and countless blood work. Everything came back normal. No one could figure out why he had so many random symptoms that didn’t seem to fit a diagnosis. And finally one blood test revealed the answer.
Have you ever waited/searched for an answer, and then once you finally got it, you wished you didn’t have it? That was us. August 1, 2013 our geneticist told us Gideon had a Peroxisomal Biogenesis Disorder (PBD). To summarize, every cell in the body has peroxisomes that oxidize long chain fatty acids (don’t ask me to describe this better; I'm a former math teacher, not a science teacher.) Basically the body cannot function with disabled peroxisomes, which is bad news for our little man.
PBD’s are characterized by developmental delay, hearing & vision loss and eventually the complete shutdown of the major systems of the body. Gideon’s blood work suggests he falls somewhere between Neonatal ALD and Zellwegers Syndrome (moderate to severe). No matter where he falls on the PBD spectrum, the end result is terminal. (Insert sound of my heart shattering).
So how do you respond to news like that? How can I choose to be happy when the story of my life is on a collision course? To answer in one word- Jesus. A dear friend of mine just gave me a book called “Holding Onto Hope” by Nancy Guthrie. She buried 2 of her 3 children due to Zellwegers Syndrome. Nancy said this about her daughter Hope-
“So how were we 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 got the diagnosis, my husband and I shared a moment like no other. We prayed & acknowledged 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 wonder how this story will play out, 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 our 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.” That’s the kind of story we hope will define our family. When it’s all said and done, we still say“Praise God, for He is good.”
Choosing happiness despite my circumstances,
Is that not the most amazing thing you've ever read? Her heart and attitude at this time are nothing short of admirable and inspiring.
It makes me want to strive to be a better person.
I have known Sam for a very long time, and she is every bit, and MORE, of the woman you just read about. Her daughter and Big T are around the same age and we've shared tips and tricks throughout the years.
I am proud to be her friend and knew when I read about Gideon's diagnosis, I had to help get her story out.
This is where you come in. Medical bills are beginning to pile up and they have set up a donation page for you to share and donate to help sweet Gideon and his family.
Please, if you can and feel the need to help this family, do so.
If you can't donate, please share their story and join me in praying for this family.
Pray that God's grace will be done in Gideon's life.
I have a feeling that this Mighty Warrior will do MIGHTY things in people's lives, mine included.
HERE is a link to donate for Gideon.
You can follow Gideon's story on Sam's blog HERE.
For more information about Peroxisomal Biogenesis Disorder (PBD) visit: