Thursday, May 14, 2015

I'm letting fear win



Our sweet Cash is doing great. We have continued our weekly blood draws to check his blasts (immature white blood cells) for the transient leukemia. For the last three weeks, all have been at 0%! This means the leukemia has indeed resolved itself and soon we will begin going monthly rather than weekly. We will likely do the monthly blood draws until he is around three because, if it were to ever develop into full-blown leukemia, it would likely occur during that window. He eats perfectly (which is huge for children with DS). Hence the more than two pounds he has gained since we've been home. 😳 He wiggles and scoots and holds his head up wonderfully, all great developmental signs!!

[this is typical. He usually scoots from the middle to here. This is at 1 month old.]

Family wise, we are good. Parker loves him so much it touches my heart. Overall, days are great. I still have many moments, some placing me on the verge of tears. I have also have moments I forget because he is so "normal." I say "I" rather than "we" for me and Warren because it isn't my place to tell my husbands story and daily struggles to the world. Perhaps one day he will share with others his personal journey. Maybe not. Either is a deeply personal and valid choice where I support him fully. 



I have been letting my fear win, though. I realized this when I caught myself doing what I do when my faith is weak: Google. I google my little heart out. Secretly searching for hours on end until link after link turns that silent shade of purple. Many times I keep my fears inside. Silently I believe that if I don't verbalize them, then Satan won't know and taunt me with them. As if he can't read my google history. Right. Other times, I keep them so personal that my family only knows simply because I talk about them endlessly, weary from the burden. But God did it again today. He laid it heavy on me to share my fears because, through my sharing, my faith can grow. And many times, still, my faith feels black from negativity. So hear they are in all their glory. 

1. I fear leukemia.

My heart is smothered by the thought. What if my Cash gets leukemia later? I fear the hospital stays, pain, and set backs that don't even exist. I find some peace in knowing that children with DS respond better to treatment and have a much lower chance of getting it again than children without DS. (Thanks, Google.)

2. I fear having another child with Down syndrome.

We have always wanted three children and my heart still feels like one more sweet baby is waiting for us later. Since I have had a child with Down syndrome, my odds default to 1% or 1 in 100. I know what you're thinking. Great odds and as you often see, the vast majority of families who have a child with DS go on to have more children with a typical genetic makeup. However, my fear is still real and I know this one will take some time to heal. Don't give me that "God won't give you more than you can handle" crap. I know we are stronger than the average bears. But, sometimes, I just don't want to have to be. 

3. I fear that people will immediately classify Cash rather than challenge him. 

If you know me, you know my fault and my strength is that I'm stubborn as--(I think you know what I want to say here). (Mom says I get it from Dad.) My stubbornness will help in parts by not only pushing us to do all we can for Cash to stimulate his abilities but also help me advocate for what what I know he is capable of. We will treat Cash just like Parky, especial behavior-wise. I fear my response to the first person who pets my son with pity as if he is some invalid or doubts his intelligence because he has that extra special chromosome. He will do great things. I declare that. I pray that I have the patience to educate a world where many are ignorant and unaccepting of the incredible abilities of special needs children. 



I know many cannot relate to my story. But I do know we all fear. I have fears for Parker, too, as we all do for our children-special needs or not. I hope and pray you have the courage to face those fears that paralyze you. Because, so often, our fear of what the future may bring removes us from the joys of the present. Yes, sometimes they may actually come true. I'm not here to say that our lives won't include awful things.  But fight. Fight so hard the devil knows your name. And fight so that he can't win your mind. Fight because God is bigger and stronger and has made us in His image. Fight because Satan has stolen way too much from us already. I'll fight with you.  

I'll end with some of my favorite funnies. 
[this picture was completely unposed.]


[this picture so shows my child's personality. He loves pockets.]

Yall be blessed. 😘

-Brooke