This post comes after another very long night of no sleep. Bear with me for a few…
You wouldn’t know from looking at that sweet baby above what troubles she has. You wouldn’t know that she has lungs similar to that of an aged person. You wouldn’t know the fear and anxiety that troubles her on a daily basis. You wouldn’t know that she struggles to breathe some days. How could you? She looks beautiful; like any other child living their life.
But I know. I know and it breaks my heart daily. Jemma is not any other child. Jemma is special… wonderfully beautiful, blessed, special.
Jemma is suffering from night terrors on an almost daily (nightly) basis. I have tried all I can but they persist. While this is a somewhat common issue among children, this is not a normal thing for Jemma. When she has night terrors, she reaches for me. Like any other child experiencing night terrors, she is unconsolable. But, this is a bigger issue for someone with Jemma’s issues. Jemma reaches for me, grabs me, won’t let go of me. In addition, she screams to the point of not being able to breathe. This leads to the question of whether I need to medicate or try to let her work through it because as I have mentioned before, the treatments are a nightmare and seem to be counterproductive at times.
My sweet baby lives her life the way she wants. She plays, runs, acts crazy. She has no idea the amount of fear that lives inside of me and her dad. Each day goes by and I thank God for her being here. Each day goes by and I cry for the baby that I almost lost who is here with me but suffering. She just doesn’t know it isn’t supposed to be this way.
I struggle with my own feelings on this. Don’t take this as a post about me bitching about my baby or not feeling or truly knowing how blessed we are. Believe me, I know that we are blessed. I know how close we came to losing my sweet girl. As her mom, I want her to be okay inside and out. I don’t want her to suffer through breathing issues. I don’t want her to have such anxiety about being away from me that she cries to even stay with her dad or when she can’t find me in our house. I don’t want her to have any memories of what happened to her but she does. I see that every time she walks into a doctor’s office.
I think she is perfect. Beautiful and perfect. I just hope her life is as perfect as she deserves, despite all she has been through. I want her to live the kind of life she wants, without limitation. I pray her lungs heal. I pray the doctors are wrong and she will be able to live a completely normal life… not for me, but for her. I want her to run, swim, play the way any other child can do. I want her to never know the true damage that her illness caused. I want to be able to one day sit down and tell her about her illness and her be surprised at how she has no lasting problems.
I love my baby… no matter how her lungs look, how she breathes, how she sleeps. I love her more than I thought possible. I only want what any other mommy wants for their baby. A long, healthy, happy life. I will give her that one way or another. I will do anything I can. After all, she is my baby. My sweet, special baby.
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