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After the last post about finding out my unborn daughter would be born with spina bifida, I wanted to follow it up with a positive post for expecting parents. These are the things I wish I had known the day my daughter was diagnosed with spina bifida.
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I AM going to be able to handle it. She is my daughter and I will move heaven and Earth for her. Whatever comes in our path, we will deal with it.
Sometimes I will ugly cry over a new medical condition or surgery, sometimes I will cry tears of joy because she FINALLY mastered a big goal she had been working on in therapy for weeks.
Some days are rough, I am not going to lie. Sometimes I am going to get angry at God all over again. Sometimes I will grieve for the things my child will not be able to do.
Some days I just have I hate spina bifida days. Regardless, I WILL be able to handle it.
Most days I don’t even think about spina bifida.
My child is still going to make me happy.
She is still going to make me mad.
She is one of the sweetest, most loving little girls I have ever met.
She can act like a sour patch kid. One minute, she will tell you she loves you and gives you a hug and kiss and the next minute she will head buts her baby brother and gets in trouble.
She will have a wheelchair and I will hate it at first, but when I see how happy it makes her and how she can get around like the kids her own age, I will quickly learn to love it as much as she does.
She is only a social butterfly when she is in her wheelchair because she has the power to roll away if she wants.
She will love her baby brother so much and will give him approximately 999,000 hugs and kisses per day.
She will scream with excitement like a Michael Jackson fan at his concert single time she sees her Gigi.
She will have the world’s tiniest feet and finding shoes that fit will be a disaster.
She will be a Daddy’s girl.
She will scream bloody murder at every doctor’s appointment from the moment we do triage until the moment we walk out the door. Literally!
She will love to explore in her wheelchair. Seriously, nothing is off limits. She will go into private business offices in two split seconds when you turn your back.
She will army crawl out of her bed and play with toys in the middle of the night. Specifically, bang her metal shopping cart into the window sill loud enough to wake the dead.
She will love bath-time and swimming.
She will be obsessed with Sesame Street and Elmo.
She will look super cute in pigtails.
She will scream bloody murder every single time she gets her teeth brushed.
She will not be able to keep her hands still. They will always have to be investigating and touching something.
When she gets upset, she will cry so loud and high pitched, you think the glass is going to break. She will do this in busy restaurants, in church, in quiet doctor’s offices. Seriously no place is off limits with this one.
She will like to swing.
She will sign more with so much force it looks like she is banging symbols together when she is mad and thinks you aren’t listening.
She wants you to think she doesn’t know how to do something, but she does things in her own time.
She will act like she isn’t listening in therapy and like she is ignoring the therapist, only to do the new “trick” a few days later without prompting. Again, it’s about doing it in her own time.
If she doesn’t want to do something, she won’t. Seriously, when she sets her mind to something, no one can change it.
She will not be fond of baby dolls. No matter how many you buy for her and try to persuade her.
She will love going to church and playing with her friends.
She will have dimples high on her cheeks like her Daddy. They will come out when she smiles big and melt your heart on the spot.
She will be the most stubborn child on the face of the planet. If she doesn’t want to do something, no amount of persuasion will convince her otherwise.
Ultimately, I wish I would have known, that it wouldn’t matter if she has spina bifida. If she can walk or not. It will not matter because I will love her more than my next breath.
She will light up my life. She will be a joy to everyone she meets. She will be amazing. She will be exactly like God created her to be.
She will be perfect, even if her legs don’t move. Even if she has to have a shunt. Even if she has sleep apnea and has to sleep with oxygen. Even if she looks like she is moving every time she leaves the house with all of her medical equipment.
You are going to still love her. You are still going to think she is absolutely perfect.
Your journey will be difficult at times, but not a day will go by that you don’t think she isn’t worth every single tear and hard day.
She will amaze you and teach you so much about true love and acceptance.