Monday, May 7, 2012

Mothering A Child With A Disability: The Secret Thoughts on Smooth Sailing.


Sometimes, as I lay in bed with my daughter drifting off to sleep beside me I am plagued by an irrational fear that holds me hostage until I too, slip off to sleep. And while I have come to acceptance of this fear often, everytime it rears it's ugly head my breath catches until I can find the voice of reason pleading with me that there is no use being afraid of things that have not yet happened and may in fact, never happen. And then, I feel silly afterward for entertaining such a fear and yet, I can't help but wonder if there are other mothers out there that share my debilitating thoughts that even now, grip me.

Ella is doing well. She is doing really well. She always has done well. And despite any grumbling and complaining you may have heard from me (hopefully not much), I fully acknowledge how truly blessed we are. Ella has no heart problems, no bowel problems, to our knowledge no sleep apnea or circulation problems, no autism or ADD, no hearing problems,  and only slight, albeit very common sight problems - basically has a clean bill of health…..


which is why I fear.


It's too good to be true. I feel like no child with Down Syndrome could be so fortunate and no parent of a child with Down Syndrome could have it so easy. It sounds ridiculous, I know, and yet my mind never stops there but instead there is a constant, flashing neon sign that glows and buzzes with the C-word. 

I fear. I fear almost everyday. I fear as I read on Facebook or a blog of one more child who has to fight a battle they are too young for. I fear when she gets a virus that takes just too long to heal. I fear when I notice little petechiae cluster on her soft clear skin. I fear when everything is just as it should be. Even now, as my baby naps after a very cranky morning, I can't help but wonder if she is simply tired from her 5am start or if there is a deeper issue that she can't tell me about but is causing pain inside her fragile little body.

And it would seem that no matter how many times I read the words over,

Trust in the Lord with all of your heart….
Do not be anxious about anything but in everything by prayer and petition…
For I know the plans I have for you….
fear pushes the word of truth aside and yet, as I was reminded last night, as I sat in Churchill Chapel,

There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love.
(1 John 4:18 ESV)

Timely, as I have been formulating this post for a couple of days now and these words are all too familiar because while not going into it too deeply, this verse epitomizes so much of the way that I feel as my soul is polluted with lies and misconceptions, bitterness and sin. I fear punishment, I fear spite and I fear the unknown. If only simply hearing these words or reading them over could make me believe them and understand them fully.

Until then, I keep pushing on, striving and hoping for a better understanding of love until I do not fear any longer. And even when storms come, because I know they will, can say, I have no fear for the Lord my God is with me….


11 comments:

Lisa said...

All I can say is that you are not alone. My daughter Cate (6 yrs) is also doing well - exceptionally well. She did have a heart defect but since the surgery has had no ill effects. So 6 years later its like I'm waiting for the other shoe to drop. I have breath stealing bouts of fear in the middle of the day for no reason, with no cause. I fear cancer, I fear household accidents, I fear the unknown illness waiting out there. Your words help, I need to put trust in god because he has been so good to me. And it helps to know I'm not alone because you are braver than me - I can't even post these words on my own blog. Thank you for your honesty.

Nina said...

Krista, I think everyone feels this way; there is such a fear of the unknown but the verse that has helped me immensely is "let the problems be sufficient unto the day"; basically, don't borrow trouble. When the fear seeps in I immediately start praising God for all of the things that are right. I've found that the blessings are always far greater than the challenges.
Thank you for your honesty, transparency and for writing from your heart; all are greatly appreciated and needed!

Runningmama said...

Oh, how I needed to read this today! After our battle with cancer, now whenever Emily has petichiae or a fever...I worry. Right now she has both and honestly it worries me so much, so thank you for reminding me to hold close what I know to be true, His word is the only truth there is.

Laura said...

Krista, I fear every day too. I wake up wondering if today will be the day that something happens to Ben (or Colin). It almost seems too good to be true that Ben is doing well.

MG Atwood said...

Fear is at the core of every mother. I truly believe this. When you love so deeply and watch over them so intensly, there has to be fear. It's what keeps us on alert to protect. I wish I could tell you it gets better, but I still have worries about my grown children. Such is life.

Patti said...

I know exactly what you're talking about, because Lily is extremely "healthy" for having Ds. It's that weird thing my brain does, as if there really is a ying and yang to life- like "we got off with those other things, but surely the shoe will drop over here." (Which I don't really believe as a Christian!) I have to remind myself- constantly !- to trust in God and not my strange feelings about how life works. Thanks for posting this, because I bet there are quite a lot of moms who go through this too.

Jenny said...

I have this exact same fear. Russell has had no major health issues and while I am thankful for that, I can't help but to fear it's because we are going to get hit with something bigger...Like cancer. I get nervous every time we do his blood work, or when he is not feeling well.
You are not alone in this fear...Thank you for sharing this.

Ron and Shana said...

Once again...beautifully stated and completely honest. There is no room in our lives for fear (unless Godly fear). However, it happens. When we faced our 17 month old son having stage III cancer it was terrifying. Fear resided around every corner. However, God quickly taught me one of the biggest lessons of my life. He quietly whispered in my ear as I looked out over the Mississippi River from the hospital room in New Orleans, LA. He told me that I was not to fear or worry because the child that lay in the bed recovering from surgery to remove his cancer was not my child. This child was HIS child. God chose me to be his Mom for a time but there is not specified time. God said that He chooses the path of this child's life and how it will go because HE knows best. In that moment I knew I had to let go. I had to leave it all up to Him because ultimately, He knew so much better than I. God is so good and understands us much better than we understand ourselves. Prayers for you and also that Ella remains a healthy, happy, beautiful child. :) Thank you for sharing!

Amanda said...

This is something I've been trying to put into words for some time. I'm going to write a post and link up to this one. Thanks for putting the fear so eloquently!

kirsten said...

It is so weird to read this because I know exactly what you are talking about. My daughter Ellie is very healthy too & I worry sometimes & wonder why I was so lucky to get this perfect girl (with an extra bit). Recently two people I know's children have been diagnosed with leukemia. While I weep & pray for their children, I also am petrified of it happening to my child. My prayers always end with keeping both of my children healthy.

lovemy3 said...

Eventhough Hailey had OHS last year, she is quite healthy. I've been mulling a post like this in my head for the past few days because she hasn't been herself....but she's cutting 3 or 4 teeth. Hoping that is what' it is and the fear will subside for a little while.

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