.joy in the midst of pain.

It's hard to put into words what has transpired over the past few weeks. I'm not sure words can even accurately begin to describe it. Ever since Nick and I met, we have wanted to have a big family, to have a house full of children running around. I have had this image of our life, of a house full of kids, choas going on everywhere, but looking at Nick feeling completely content and full of love of what our life looks like. The glitz and glamour of fashion and money isn't something I have dreamt of, but a warm house full of kids and a loving husband, yes please! When Parker came into our lives, I really felt for the first time that I was doing what I was created to do. That this is what God created me to do and I have loved every single second of being a mother to Parker.
At about 3 months, Parker was diagnosed with an eye condition called Nystagmus. Nystagmus is basically involuntary movements of the eyes. His eyes move in a circular motion, however, he seems to have a more mild case of it...but it has definitely affected him. When the doctors told me, I was devastaed. Immediately thinking about how this would affect his future, was school going to be an issue, was he going to be able to drive, etc. As a parent, you want your childs future to be limitless, you want the sky to be the limit and them to be able to pursue any dream they want. It was really hard for me to think that there could be some limits on his future, but with lots of prayer and processing, I began to feel the peace of God about this, that he had big plans for Parkers life.
At his 6 month well child appointment, I was talking to the pediatrician about the diagnosis and how I was concerned about him being behind in his milestones and not progressing at the same way all the kids around him were. Since Nystagmus is a neurological disorder, she referred me to a Neurologist at Seattle Childrens hospital as well as an early intervention place to get some physical therapy and get him caught up on his milestones.
Since that appointment with the pediatrician, I had been doing exercises at home with him and he had been making some progress so I was encouraged.
On Thursday March 3rd we had our appt with the Neurologist. I was nervous to go, because no one wants to have to take their baby to the hospital for an appt, but was excited to get Parker caught up. Our world was kind of rocked during that appt. The neurologist was concerned there was a malformation in his brain and he wanted to do an MRI. When he said that, I literally felt like my whole world came crashing down. My baby, my perfect little baby could have a brain malformation that would affect him his entire life? We left the appt and Nick and I cried like babies. Why was this happening to Parker? Why couldn't we take this away from him? What did the future look like? Could he live a normal life? So many emotions and feelings were running through our heads, it was hard not to just completely shut down. I would just look at his perfect little body, his big blue eyes and go between total sobbing and then complete joy for how much I love this little boy.
Tuesday March 8th we had his MRI to see if they found any malformations in his brain. I was nervous and scared but truly felt lifted us by all the prayers, texts, calls and messages that we got. He was an angel during the whole thing and never even let out a cry. They had to put him under and we were able to be there when they did that. They put a little mask over his face to make him fall asleep and then after that they put an IV in him to keep him under during the 30 minute scan. Watching them put the mask on and him slowly lose consciousness was awful. He is so little and helpless, he shouldn't have to be going through this. I walked away feeling so lost...my poor baby was having to do this alone. We walked around the hospital and waiting for it to be over. He was so peaceful when they brought him back and he was just sleeping off the anesthesia. After he woke up he was smiley and laughing and we had a great day. Thank goodness that Nicks mom was there and my Dad was able to be there so we could be surrounded by family who loves us.
We got the results on Wednesday morning. I was at work when I got the call and was actually surprised at how calm I was when he delivered the news. The did find something in the MRI. He was diagnosed with Joubert Syndrome, which is basically that his brain stem and cerebellum didn't completely form together. So this is directly linked to his Nystagmus as well as delayed motor skills. I called Nick immediately after and we talked about it, but I don't think you can really understand what that means right away, I feel like we are still trying to process the diagnosis. The good news is that it was one of the more mild malformations they could have found in the scan, and he doesn't have a lot of the really severe symptoms of this condition, so it appears that he might have a more mild case. The effects of it are a very broad spectrum from mild learning disabilities to severe retardation, so we are praying hard that Parker is in the mild side and is able to function more normally than most.
On Thursday we had an evaluation at the early intervention place and since Parker does qualify for assistance, we are able to get him 4 hours of physical therapy a month as well as 2 hours of educational therapy. I am really excited about this because studies have shown that when starting therapies early, it can make the world of difference in their future. So they will be coming to our house for 1 hour a week to work on catching Parker up on his milestones.
I dont have any idea what the future holds, but I do know that we will get through this. God has already given us peace as well as strength and I feel absolutely privileged to be Parkers mom. God gave me a very special gift and the amount of love I have for him and joy that comes from being his mom is unexplainable. Do I wish that I could take this away from him? Yes. Does it hurt my heart that he has to have so many challenges to overcome already? Absolutely. Are we going to be okay? Yes.
I have already grown so much in the last few weeks and have been so comforted by a few Bible verses in particular {will share on that later}. But the goodness of God will outshine this all and He created Parker perfect in his image. He formed him knowing exactly what he was doing. And although it might not be exactly the dream I had envisioned....I believe that God gave me the gifts to be able to handle this. It's gonna be a long road and we are going to daily have to rely on the Lord for strength. Although my dreams and hopes have been radically altered in the matter of a few weeks, I know the way our future will unfold is exactly what God has planned for our lives and that is better than any plan I could have made for myself.
I urge everyone to truly be thankful for what they have. If you have a perfectly healthy baby, praise God for that wonderful gift. It has completely put life into perspective for me and how precious it is. As a family we praise the name of the Lord and ask for prayers on our behalf.