Roulette


his mind like the rain
leav’n the safety of the sky
illumination
~~~
I frequently (however briefly) forget that I am pregnant. Since Noah’s birth, I had decided I was done at one. My mother-drive had been completely fulfilled in every way when I was given Noah. God has given me more than I deserve. It is truly a pressed down, shaken together, and running over gift (Luke 6:38). 
This past Christmas Eve, while in Kansas, we were at Church with my family. Noah was happily playing in the kids room with a few of his cousins while Matt and I were enjoying the Christmas Eve service. There was a moment during the service that I felt a rush of anxiety, I could physically feel my heart race. I instantly knew what it was. I leaned over to Matt and I said I was ready to have another child. We had previously both decided it probably wasn’t a path we would go down given Noah’s diagnosis and the chance of our next child also inheriting Angelman Syndrome. 
In all honesty, I can say that I had never felt the need for another child, or jealous of those who had more than one child, or like it was “not fair”. It was a decision we had made together and were both equally content with Noah. We were (and are) both aware of the work we have cut out for us with raising our sweet boy. 
Despite the numerous genetic tests we have had done, we still do not know the exact mechanism for Noah’s AS. We do know that it was inherited by the maternal gene (mine) and that his form of AS is one of the rarest occurring forms. We know that the methylation of  Chromosome 15 is either trans-located or there is an imprinting error. We know that it is not because of a deletion on the 15th Chromosome, which statistically tends to cause more severe symptoms of the syndrome. In other words, we have ruled out what didn’t cause his AS, which is wonderful and yet at times, it has caused me much frustration. We were told by our Genetic Neurologist (who has studied and researched AS for 10+ years at the University of Chicago and never seen a case like Noah’s) that the re-occurrence rate for a future child could either be 1 in 2 (if I carry 50% of the genes) or 1 in 15,000 (like the general population)  for the most common form, deletion… or 1 in 2 million for the form that Noah has (if it is not genetically inherited). Confusing, right?!
Going into this pregnancy, we felt like we were playing roulette a bit. We went into planning and preparing and “baby-making” knowing good and well that we may in fact have another child with AS. We were comfortable with those statistics. We are still comfortable with those statistics. Noah is my normal, he is all I know, he is what I love. I would be the most blessed mother to raise another child like Noah, AS and all. 
That said, I still pray each day that our little girl will develop without any exceptional needs. I pray that she will have a healthy body and mind. I pray mostly that she will know her Creator and the rich blessing that she will be entering when she meets her brother and family. 
I would love to be able to say that I don’t get anxious about the possibility of re-occurrence, but I can’t. However, I can admit that I have a sense of peace about the pregnancy and what may come. I can also admit that when I do become anxious, I am instantly reminded of God’s provision for our lives, His plan for each moment and His purpose within the big messy lives that we live out. 
I’m so excited to meet our little Maeby, and regardless of what God has planned for her life, I will embrace and love her as deeply as I love our little Noah. 
~~~
In other news, we are 95% packed for our move and living out of boxes… But, it’s done and we’re ready! 
Noah will be in his last week of therapy in Rochester next week, this is very bittersweet for us.
I’m so happy to say that after submitting an article to a website for Special Needs, mine was accepted and is set to be the article to kick off their fall postings. I will post more when the time comes.
Lastly, Matt surprised me last week with a writing course this Fall that I will be taking. I couldn’t be more excited, but more importantly, thankful for a husband who supports my goals and believes in me!

~~~

B

4 thoughts on “Roulette

  1. That's so awesome about the Special Needs website. I can't wait to read it. I am so excited for baby Maeby Rue. She will be 100% perfectly and wonderfully made!
    Love C

    Like

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