I seriously don't know how I ever got so lucky to be blessed with 2 of the sweetest boys. God has completely blessed me beyond measure. As everyone close to us knows, that Evan my oldest son (who will be 7 in November!!! Waaahhhhh can't believe it) was born with a very rare Chromosome Abnormality.
When Evan was born on November 11th, 2008. His father and myself fell head over heels in love with him. He was literally THE sweetest thing we had ever laid our eyes on. 7 lbs. 10 oz. of pure perfection, straight from heaven! After Evan was a couple months old, I began to realize he wasn't seeming to meet the milestones that were mentioned in everything I read. I became concerned and asked my pediatrician (at the time). He assured me that everything was completely fine, and that the worst thing I could do was compare him to other children.
When Evan was about 8 months, I just knew in my spirit that something was wrong. I insisted that my pediatrician figure out what was going on. At this time Evan was 8 months and only had just rolled from his back to his belly for the first time. (Which, once his little brother came along in summer of 2011, he did this at 5 weeks of age!!) He was not at all trying to sit up or even really hold his head up. He up to this point was really like a newborn baby. He would not make eye contact with people, besides Kurt and myself. He would space off for long periods of time at lights. We had no idea what was going on and FINALLY my pediatrician admitted he had no idea either and that if I insisted we would get a second opinion.
This was September of 2009. We went for a second opinion and met the most amazing pediatrician out there!! I fell in love with her instantly, especially her, get it done personality. She assessed Evan one time, had another pediatrician come in and assess him as well. She came to me and was so sweet and sensitive. She pretty much said there is definitely something going on and the best thing we can do is figure out what it is so that we can do everything we can to get Evan the help he needed right away.
The next couple of weeks we had blood tests done, and sent off to specialist in another state. We were finally contacted in January of 2010 by the Chromosomal specialist who wanted to see us and show us her findings. Kurt couldn't get the day off work so my Mom went along with Evan and I. During this time we had many people question wether Evan was autistic or not. I was pretty much sure that, that was what was going to come back.
We went and met the specialist and she informed us that it took her and her team the past 4 months worth of research to find what it was that Evan had. She explained that there is not much information on it at all because of its rarity. She told us that when Evan was forming in the womb (the womb that God formed and fashioned Him in with plans and purposes for his little life) that when his chromosomes were separating that his 11th chromosome took some of his 19th chromosome. She said that they called it 19q deletion.
Obviously my Mommy heart only had one absolute concern right away and that was wether or not this would affect his life span or health in any way!!? She said that Evan is only the 5th know person to ever be diagnosed with this exact abnormality. She said with the other cases only one who had a heart murmur. Any of the other things were none life threatening such as cleft lips, deafness, and blindness. She wanted Evan seen for a Echo of his heart to rule out any murmur.
Evan had a Echo of his heart done the summer of 2011. Everything came back completely clear!! We were so relieved and thrilled. They said Evan was actually the most slight case (from what they could find) out of the other 4! They said that they found findings that a lot of babies with any abnormality like Evans was miscarried in the first trimester. God had other plans for my little miracle baby!
I do remember when Evan was first diagnosed and finding out that he didn't have autism, being struck with complete fear. I knew that autism was so much more common and felt like people knew the outcome and what to expect a lot more. This was when I realized that it did not matter what any Doctor says about my child. Without little to no research to reassure me of anything, I needed to rely fully on God for the outcome, and nothing or no one else.
God literally took me through the grievance process in a weeks time. I seriously had a different emotion each day. First was denial, "this can't be right, not my baby." This emotion came before Evan was ever even diagnosed. Then right after being diagnosed I was in the blame stage, "they should have given me a cesarean section sooner, he was stuck for too long, its all their fault." This was the point where I also got mad, "How dare them risk my babies health." Then I got sad, I remember just laying on the floor beside Evan reading scripture over him and just bawling my eyes out praying that he would be able to at least pick up his head. Then on the final day of the week I had acceptance. I felt like I woke up that morning, looked at Evan and decided me crying and worrying about this was not going to help him at all. God made him perfect and God would use this all for His good. In the meantime I need to get Evan all the help he needs.
I can honestly say that ever since that day, I have had so much complete peace with this! (I'm not saying I don't have a hard day here and there). But God is so so good and I know that HE with his own hands formed Evan in my womb and knew every single thing about him way before then. I remember Kurt getting really upset a lot of times, about wether or not Evan would ever walk, talk, understand. Wether Kurt would ever be able to take him fishing. I remember saying to Kurt, "we cried thinking he would never sit, or crawl" (at this time he had began doing both). "So don't worry he will do everything, just in his own time."
This really was the beginning of my faith journey. God grew and strengthened my faith so much through Evan. I literally some days think He definitely gave me Evan to save me from myself. Before this time, I always believed in God but never had a reason to really have to rely on God. In this I could rely on nothing but God!
I am so proud to announce that Evan is an absolutely amazing, sweet, tender hearted, people loving, talking, walking, running, reading, writing, and lover of Jesus, 6 1/2 year old! He brightens my world every single day and all the lives of everyone around him! I still don't know why I ever deserved him, but I am so so grateful that God choose to bless me beyond measure!
Psalm 139: 1-5 & 13-16
"You have searched me, Lord, and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you, Lord, know it completely. You hem me in behind and before, and you lay your hand upon me. For YOU created my inmost being; YOU knit me together in my mothers womb. I praise you because I AM fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was NOT hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."
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