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.
She is a very sweet baby girl. Praying for you both. And I hope her night terrors ease up until they are gone.
Jemma is a sweet-heart, inside and out, the only comparison I can even think of is with my great nephew. He was diagnosed with grey matter hetertopia and epilepsy from that and has a lot of learning delays, it makes him no less of a child but sometimes when I see him play, I fear him falling and hitting his head.
Hugs and prayers!
She is beautiful and perfect! Keeping you both in my prayers.
Iz used to have panic attacks if I even walked a few feet away from her. It took months and months and months after her surgery to get to the point where she could be away from me for an hour at a time. Even then, the panic would hit her at random times and I would need to hurry back to her. We finally reached a place where things seemed almost normal and then she was back in hospital again and we backslid the entire year and it felt like those early days after her surgery. It has been a few months now and she is still struggling–we even started seeing a psychologist to help her through it. Luckily, she is not afraid of doctors or the hospital in general so ordinary checkups and visits go just fine–she does, however, remember specific things and if they begin to happen (getting a hospital bracelet is a trigger for her, for example), she just loses it 🙁 I hope one day, the memories of a surgery that happened over a year ago will fade. I hope things get better for Jemma as well {{hugs}}
As a mom to a 3 year old who is battling cancer, that 2nd to last paragraph really got me.. sending you and Jemma love, hugs and prayers. I can also relate to the anxiety, my daughter was diagnosed 8 months ago and the longest she’s gone without treatment or some kind of test and being poked and prodded in these 8 months is 10 days. I hope each day/week that her anxiety lessens and that she doesn’t panic the second someone tries to touch her. She is now on oral daily chemo at home and fights so bad, to the point she sometimes gets so upset she throws up and I worry we aren’t getting enough into her. I so understand the battles, the fear and how it just tears your heart out watching them fight these battles.
((HUGS)) Keeping Jemma and you in my prayers. I have had breathing issues for over 40 years and this breaks my heart. If you look at me you wouldn’t know how I suffer. The hardest thing over the years has been that my family thinks I’m fine because I appear that way on the outside. My husband to this day still doesn’t get the fact that I can’t clean the shower or wash the windows but he won’t do them. So I do them and then I suffer.
{{{HUGS}}} She is beautiful of course and I hope she gets through the terrors soon!