exactly the way she is- flashback post 2014

March 31, 2017

So many emotions flood your mind when you are pregnant with a child with spina bifida or omphaloceles or any birth defect.  If you were hoping to have more children, I can almost guarantee you will have that thought, “will I have another child with spina bifida?  Is it genetic? Is it me?  Is it something in my environment?  Did I take enough folic acid?  If I caused this, what did I do?”

During the first year of Tough Guy’s life, these thoughts poked into my mind at random times.  I desperately had always wanted another child.  I didn’t feel like we were done having children, but naturally the idea that how could I take care of another child with these same needs?  What if it happened again?  Those thoughts led to fear.  But as time progressed, I learned that there was only truly one thing that helped me to progress through the fear and into a place of hope.  And that was my Faith in God, and my Belief that God truly has a plan for each of us and He truly desires the best in all of us be shared.  It was not an easy process, but slowly, through prayer, support, church, personal quiet reflection, questioning, talking, listening, I slowly came to a place of peace.

Eventually, I came to a profound thought.  I knew I loved Tough Guy and his brother Turbo Man for exactly who they were.  I thought about this thought; “Turbo Man has no disabilities and I love him so.  But I don’t love him because he can run, or sing or pee in the potty, but rather, I love him because he is perfectly himself.  But what if Turbo Man was the one born with Tough Guy’s birth defects. What if he used a wheelchair…. I knew I would love him the same.  He would still have his amazing long lashes, his chocolate eyes, and his squeaky little voice that rambles off sports scores all day and his sensitive, caring heart.  It’s because that is truly him.”

Then I imagined the opposite.  What if Tough Guy was running around, potty training, jumping in puddles and climbing up counters.  I would still love him, but not any more and not any less.  That’s not what makes him unique.  I realized I would actually miss all the nuances of his disability that make him uniquely him.  I love seeing his determined little face wheel across the floor.  Or his smile when he looses his balance playing with his toys.  And I would not experience the amazing reactions of people that see him wheel around in public.  That is truly a gift from God that I get to experience because of Tough Guy’s uniqueness.

So, it is no bible verse that tells me this, no church, no spiritual leader, but rather my heart that truly feels that each of us come to this earth uniquely made.  I realize Turbo Man is exactly himself, because that’s how God made him and who he has chosen to be.  Tough Guy is exactly who he is and placed in his unique body structure because that’s who he has chosen to be.  Whether God turned the science of his fetal development so that Tough Guy would be born with physical defects, or God formed him that way, or it just plained happened, I will never know.  But I know in my heart, it was just meant to be.

I am not a special parent chosen to have a child with special needs.  But rather Dan, Turbo Man, Tough Guy and my souls were just meant to be.  I can’t explain it, but I just know that has to be it.  At least, that is what I believe.

So when I knew in my heart I had accepted this peace, I also knew, my heart was ready to love again. And if that soul came to us with a broken body or a not, I knew she would bless us.  I knew I would do what science said to do, because there is also truth in science, so I took extra folic acid to help prevent spina bifida.

And I prayed for health.  And I prayed for miracles.  And I took my folic acid….a lot of it.  And when we saw that ultrasound at 12 weeks in the same room, same chair as we heard about spina bifida, I clutched my rosary, asking Mary for her Grace.  So that I could accept this child in whatever way she decides to come.  And when we saw her spine, healthy and whole, I breathed a sigh of relief.

Spina bifida, omphaloceles, birth defects, disability,  are strange things.  I prayed our children would’t face them, but yet, I can’t imagine my son without it now.  I prayed that Tootstie Pop would be healthy.  I knew I would love her just the same if she too was born with Tough Guy’s diagnosis or something else, but I also prayed for her sake and mine, that she would not have to suffer through surgeries and I prayed that I would not have to witness that suffering in another child.  While seeing Tough Guy in his moments of suffering is one of the hardest things in life to witness, it is also the place that I know God holds me most.

I know this is a rambling post, but I am not going to edit this one.  I know it is something I want to share, because I am not alone.  There are so many other mothers wanting more children after a diagnosis.  And I know they love that special child with their whole hearts and accept them, but I want them to know that it’s ok to pray for health.  It’s ok to follow science and take the supplement to help prevent such a thing again, and it’s ok to be nervous.  It’s ok to pray that you don’t face that diagnosis again.  But I also know, that I am so glad I took that leap of faith and believed in God’s grace to give us Tootsie Pop;  exactly the way she is.

She has been the perfect addition.  I hope that if you are at that place where your heart longs for more love,  for another child, you find peace and believe in the goodness of each child God has graced you with.

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