Does it ever get easier?

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.

 

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My sweet Eva.

My sweet Eva.

I can’t promise that this surgery will be your last, as a matter of fact I know it won’t be.  You will need to have another one on your heart sometime when you are a young woman, that is if your heart doesn’t tell us that it needs to be intervened sooner.  Until then we will be focused on staying on top of every doctor/specialist appointments.  Yes my love, other girls that have turners syndrome have no signs or symptoms of it, but don’t forget that some girls won’t be able to take their first breath and you did, but it came with a price.  Some girls fight to have a better body, you fight to keep yours.  Some girls fight to not have their hearts broken, you fight to keep yours beating.  You have had to fight harder than most to live so don’t ever take that for granted.  After this surgery you will have another battle scar so wear it with pride because some girls care more about not having an imperfection but your “imperfections” perfect you.

Don’t loose that fire in your spirit that drives your mommy, daddy and brother crazy.  We know that same fire is the reason we have you today.  Don’t loose that funny laugh that forces you to tuck your chin in because we know you deserve to laugh after everything you have gone through.  Don’t loose that sweet smile because you light up our days knowing you are with us and you didn’t have to be.  God put us all together because He knew we needed each other, and we go through all these hardships because He knows we need Him, we always will.  You are never alone my love.

My sweet love, you were born with turners syndrome, but that is not who you are.  You are not a syndrome, you are not fragile, you are not a sad story.  What you are my sweet love, is a Devereux.  You are a warrior.  You are unbreakable.  You are solid and you are made with the unyielding love of our Father Lord Jesus.