Tuesday, September 15, 2020

I Didn't Want a Child with Special Needs


I was afraid.  Always.  With every new pregnancy, there would be moments in that first trimester that I would worry myself sick about the possibility of something being "wrong" with the baby.*

*Before I go any further, I am not well-versed in this nomenclature, and I'm sure I'll say the wrong thing unknowingly, but I never mean to offend.

I would anxiously await the genetic testing or anatomy scan and breathe a huge sign of relief when everything came back clear.  Although I know God doesn't work this way, I would think to myself, "We've had four (or five or six) healthy babies...when will my luck run out?

Typing all of this out humiliates me.  It wasn't that I didn't love those around me with special needs.  It was that I didn't think I could handle it.  It was fine for my neighbor, or that beautiful woman of faith who had a special needs child (or five!), but I wasn't that strong.

Then, we found out at twenty-three weeks that Agnes had a two-vessel cord...which meant next to nothing.  She could have health issues, or she could be completely fine.  Since her genetic testing was normal, I didn't give it much more thought.  She was "good."

Then the nursery nurse's words, "Umm, just so you're not alarmed when you change her, she doesn't look quite normal...and she has a big bruise down her leg."

Needless to say, a million questions ran through my mind -- I hadn't even been able to completely see her as I was hemorrhaging.  Would we be able to announce we really had an Agnes?  Was she okay?  What about the bruising?

As we learned more those two days, and the doctors threw out the name of a syndrome to attach to her health issues, the questions and unknowns weighed heavily on us.  What would she go through?  What crosses would she have to carry?  Would she grow and develop normally?  Would she be in pain?  Those thoughts made me ache for her.

I wanted to fix it all.  I wanted to take her pain.  I wanted to carry her crosses.

But...in those early moments, was it anything like I thought it would be...the things I was afraid of?  No.  Not at all.  In fact, the love for her was fierce...deeper than I knew I had in me...more life-giving than I could imagine.

And, that's when I realized the birth of a child with special needs wasn't a curse.  Instead, it was a tremendous gift.  God chose us.  He gave Agnes to us.  And, while I don't for a minute believe God causes pain or punishes us with trials, I do believe He uses them to bring us closer to Him.  And, that He has already.

I was asked if I did anything during pregnancy to cause this.  And, while I can't honestly say I haven't thought of that, the very next day a man I didn't even know shared the story of the blind man in the gospels...the one in which His disciples asked if he or his parents had sinned to cause this, and to which Jesus replied: "Neither he nor his parents sinned; it is so that the works of God might be made visible through him."

It is so the works of God might be made visible through Agnes.

Later that week, I was listening to a podcast from Father Mike Schmitz...and he said this:

The best is going to be the cross...for me and for you. The best is going to be denying this part of me who wants to run away and say yes to the Father’s will...for me and for you.  

In our love for others we want to spare them...pain, difficulties, struggle. But that means our love would spare them from greatness. It would spare them from the opportunity to love heroically. It would spare them from the opportunity to lay down their lives out of love.

In our desire to make things easier for them, we would give them mediocrity and rob them
of the opportunity to live and to live heroically.

Love demands sacrifice.

My tendency as a mother is to want to take this pain and "being different" away from Agnes.  But, in doing so, I would rob her of the opportunity to use her crosses to bring others closer to Him.  And, to do that would be to play God.

So, instead, these last five weeks, we have said so many prayers...begging for healing and understanding...asking God to show us how best to care for Agnes and how to lighten her burden...all the while praying we use what He has given her and us to bring greater glory to Him.

Agnes may never receive the miracle of full healing, but there are miracles happening all around us...in the prayers offered, the the mindsets changed, in the finding of excellent medical care, and in the humbling of her mother.

The diagnosis I used to run from in fear is the one I'm thanking God for now.  I'm so humbled and honored that God chose us to be Agnes's parents.  I just pray I'm worthy of such a gift.

I didn't want a child with special needs.  I needed one.

She is how He desires.  And, that, is perfect.

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