As a mother with a child with special needs, I have to know now, does it ever get easier? I can handle the medications, I can handle the therapies that come six times a week, I can handle the spoiled behavior that she learned being in the NICU for the first five months of her life, and the same spoiled behavior fifteen months after being discharged… shoot, I can handle both babies having a breakdown at the same time now. The one thing that I can’t handle is the surgeries… I can’t handle the weeks prior, I can’t handle the week before, I can’t handle the day before, let alone the day of surgery.
I think I’m always fine but my anxiety manifests in ways my mind can’t control. Physically the stress takes over my body. All of a sudden theres something sitting on my chest, preventing me from taking a complete breath. Just as abruptly my eyes fill with tears, I start making an ugly cry face and I can’t stop from sobbing, not to mention to hide that from the twins is a challenge, God forbid they see my ugly cry face. Thats something you can’t forget.
I try to keep busy to prevent myself from imagining the “what ifs”. Leaving me in a state of panic every time I think of it because every surgery comes with complications… of course it does, why wouldn’t it? Your going under anesthesia, your getting cut open, in this case theres going to be a foreign object put inside, theres the hope that the surgery fixed the problem, theres the pain, and the recovery which is the hardest part. Theres also the fact that all this stress is put on my 20 month old daughter.
Is she used to it by now? This is her fifth surgery, her fifth in her 20 months here on earth. Her two heart surgeries, the fundoplication/g-tube surgery, the surgery to remove her cystic hygroma and now the surgery to fix her fundoplication and repair her hiatal hernia. Every one just as stressful as the last because her syndrome makes things a bit more complicated for the doctor. Every one leaves me just as brokenhearted as the last because I can’t do anything to take her pain away. Every single one leaving me more distressed than the last because as I get to know her better and as I watch her grow and learn and persevere despite the odds it gets harder to know life isn’t promised for anyone of us, including my children.
So should I be used to it now? Could I ever get used to it? Will we be able to go for longer than a year with out a surgery? How about five years? ten? twenty? Will she be able to live a “normal” life with out having another surgery right around the corner? We won’t ever know ahead of time, but I can say it is an honor to be the mom of a very special set of twins. I pray that they always strive to give glory to God and are able to see the positive of everything that happens in their lives, despite how difficult it may seem at the time. I pray they always take care of one another and love each other unconditionally, and I hope with all my heart that they learn to show their affection more kindly. For example, I hope Eidan learns to hug his sister more gently, instead of pinning her down on the ground and I hope Eva learns to use a softer hand and touch her brothers head, instead of hitting it with all she’s got. Theres no doubt they are fighters, in every sense of the word. Amen.