On January 27th we found out that most likely Dustin has something called CHARGE Syndrome. A few days ago two vials of his blood were pulled from his sweet little hand and sent to a lab to help confirm that this is indeed what he has. We won't get the results for quite awhile but after researching CHARGE I am pretty confident that the geneticist is right.
There is just no way to prepare for this kind of news. It took a few days to process and during the storm my heart and mind were all over the map. I questioned if something that I had done while I was pregnant could have caused this. I thought about all the things Dustin might never do. I pictured life with people pointing, staring and feeling awkward around our guy. I processed how my own life was going to be filled with therapy appointments, Dr. visits, and working countless hours with him at home to progress and how I might have to let some of my own dreams like fostering kids go. I looked at other little boys running around outside throwing footballs and cried. I googled. I you-tubed. I held him while all I could see was a Syndrome. I thanked God that Dustin didn't have some of the more severe CHARGE symptoms. I mourned for the potential loss of being empty-nesters. I got angry at moms complaining about trivial things that their completely healthy babies were walking through. I cried from the deepest parts of my soul onto my moms shoulder. I hurt for my husband in a way that I can't begin to lay words on.
A lot went on in my heart and mind during my processing days but doubting Gods goodness was not one of them. Nothing about my faith in God wavered. God was not caught off guard by Dustin's diagnosis. This was not a mistake. This was not an accident. God knew that Jake and I would be the perfect parents for our little man. He knew that Kylie Jo and Lila would be the perfect big sisters too. He counted our family worthy for this journey.
As I look out over the terrain of my life I see how God has gone ahead and prepared our family for this journey because this is hard stuff and He deeply loves us. It is NOT an accident that in the past two years we have become close to three families who have children with special needs. They have wrapped their arms and hearts around us during this time in ways that others just couldn't. It's not an accident that since Dustin's birth one health concern has been revealed and tackled at a time so that we weren't bogged down by it all at once. It's not an accident that there has been so much waiting because it was in that waiting where I have found unexplainable peace. It's no accident that I was a teacher and though I feel that I was never adequately trained to have special needs children in my class, I have sat in plenty of ARD meetings and watched parents advocate for their children. My boys 504 plan is going to be legit! It's not an accident that God sent us Christie who is a complete and utter joy and blessing to have under our roof. God has been so tender and gentle with our hearts during this processing phase.
I've learned a lot in the past few months. Through Dustin, God has flung open this entire new door that our family gets to enter. We get VIP front row seats to view sides of God's love and faithfulness that others don't get access to. The world will look at our boy and they will see a syndrome. They will put limitations on what he will be able to do. They will point, avert eyes, and laugh. The world will label him. The world will put him in this nice tidy special needs box. They world will look at Jake and I and feel sorry for us. All I see when I look at Him is Love. Dustin is a perfect gift from God. God will use Dustin's story to bring Glory to his name. He uses all things for good. Even when we don't understand His plans for our life, they are ALWAYS better than our own.
I'm going to try to tackle something as best as I can here: following Jesus does not guarantee that you're going to be healthy. Following Jesus is not going to make you wealthy. Following Jesus does not mean that only good things will come knocking at your door. The message of the Gospel of Christ is not that, in following Him, everything goes right, but that He is enough, no matter what happens. That's the message of the Gospel, not that everything's going to be okay. Bad things happen. Tough things happen. Life is super messy! This is not about what Jesus can get you, it's just about Jesus. He is enough! He is always enough!
So we are just pressing and leaning into Him. We are at peace and deeply in love with our little man. I know pity will be the gut feeling that you have for us as you read this because I used to be you. For me, for Jake, for our girls, please fight that feeling. We are doing okay! God is doing big big things over here in our house and it is because of Dustin being exactly who He is.
We do have some prayer requests:
On March 3rd we will go see an ophthalmologist (Eye Dr.) to see if he has colobomas in his eyes which cause vision loss. We know that he can see but he is very sensitive to light and has a hard time tracking fast moving things. Please pray for his eyes and that his vision is restored to the best vision EVER!
On March 4th a team of therapists will be coming to our house to figure out where to begin. He will need speech therapy, and probably occupational and physical therapy. Right now he is almost 8 months old and he is not rolling, sitting on his own, and refuses to lift up on tummy time. He also does not grab for toys and such. Please pray that his muscles will begin to get stronger, that his tummy time will become enjoyable, and that God will reign over the therapists hands.
The date is not set but he will be having an MRI scan of his brain to see if there is damage, We would ask that you pray fervently for good news here. We ask that you pray if there is damage that God would work a miracle. God is in the business of miracles.
Satan is always lurking where God is doing mighty things so please pray that Satan would find no ways to attack our minds and hearts!
No need to re-invent the wheel so I will attach a link explaining CHARGE syndrome for anyone who would like to know more about it. http://www.chargesyndrome.org/about-charge.asp