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.

I feel like I have already made so many mistakes.

The babies are 18 months old and I can’t help to feel like I have already let them down, despite my effort to never do so.  This week Eva had to go by ambulance to the ER because of a high fever and because she was so inconsolable her lips were turning blue.  While we were waiting for the ambulance I had both babies in my arms and I started to cry exactly like them.  Eva was in pain, Eidan was scared and I am their mom and it is my job to help them and I couldn’t.

Through an X-ray a hiatal hernia was officially confirmed and now she needs another surgery to correct that as well as to fix the fundoplication that she already has.  The same fundoplication that and has given us problems since day one.  Even though its been rough we have finally found a system that works for us and were going to back to square one right after this next surgery.  We don’t know if this time things will be better, or worse.  I can’t help but feel right back in that dark room I was in months following the birth of the babies.

I am tired of seeing her through pain, I am tired of being away from my son, and I am tired of only seeing my husband when we switch out from the hospital.  I don’t want my daughter to have yet another battle scar, I don’t want to miss out on my nightly rituals with my son, I don’t want to have to update my husband or get updates of our daughter, depending on who’s with her that day/night at the hospital when she has to go in again.

I don’t know how I am going to tell her how incredibly strong and how fucking unbelievable she is despite every one of her imperfections when she becomes a teenager and she starts to notice.  I don’t know how I will tell her that God made her heart the way he made it in perfect timing and for perfect reasons.  That she was born at a time that it could be repaired because he knew the love in her heart was too much a regular heart could handle.  I will tell her that scar on her side from that procedure is beautiful.  The g-tube and fundoplication scar was put there because she had to learn to eat by mouth later in life, because during the crucial period that babies learn to drink out of the bottle, she was too weak and needed to focus on healing and growing to get out of the hospital to be back with her brother.   I will tell her as soon as the g-tube is taken out and after a scar forms that it is beautiful and I couldn’t wait until I saw that one created.  The cystic hygroma was the first thing the doctors saw when they realized there was an issue when she was still in my belly, and it was a reminder of the long hard road for all of us.  When it was removed that reminder that every doctor said she was not going to survive was gone with it.  That scar is my favorite and I will tell her its beautiful.

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I will always tell my son that he is just as special as his sister.  I will tell him she is no more important than him because I know he will feel like that.  I will tell him I recognized at a very early age that he is very perceptive and extraordinary.  I will let him know I tried very hard to give him extra time after Eva goes to bed so he knows he’s important too.  I know he will feel like she gets more attention sometimes because of her health but I will remind him that she is alive because of him and he is alive because of her and that is a bond that is more precious than any person can describe.  I will remind him that he is always her protector and God planned this perfectly for His purpose.  I will forever thank him for his patience, love and sensitivity that reminds me so much of his father, and is reason why I fell in love with his father in the first place.

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Thank you God for every day and every battle.  Don’t let me forget any of it.