During the next couple of weeks I’ll be featuring a few guest posts, as I get moved into our new home. Today’s guest post is by my good friend Samantha. She is mother to twins with Marfan syndrome: Kylah and Klaire.
It’s twins… Seriously? Smile.
I was so excited I’m about to be a twin mom, I plan all these things, than I find out it’s girls. (Although I secretly wanted a boy, who am I kidding everyone knew I wanted a boy.)
I had so many plans for “MY GIRLS”, being bi-racial I got excited for their hair, couldn’t wait for the curls, all the pretty clothes, all the styles.
Stock piles of diapers and bottles, stock piles of everything.
26 week ultrasound, something all mothers dread to hear, We found something with Twin B and we want to look further, OK so Hydrocephalus, Meh it could be worse was what I thought, True right.
28 week ultrasound, Twin A has leaky mitral valves, Ok so. A heart defect and hydrocephalus. Still could be worse. The rest of my pregnancy was fine, 36 weeks in, my ladies were ready for their grand entrance, and I was so excited.
Born 21 minutes apart, Klaire and Kylah are here, I see them for 5 mins; off they go to the NICU.
Scary, I want my babies, I can’t go. 3 hours later, I have doctors coming to ask me questions, I’m overwhelmed and don’t get it. What’s wrong with my babies? As much as I was prepared for the heart defect and Hydro, truthfully I really wasn’t.
Hours after being born, they had echos, eye exams, genetics, oxygen and feeding tubes. Wow something no new mom should have to encounter.
Day 2, I have a cardiologist telling me my twins have Marfan syndrome…They have what? All I think was my dreams are shattered, that’s right my dreams. It’s not my dreams, they have the long road to travel. I’m just the one standing beside them every step of the way.
All these doctors are explaining what’s going on, dislocated lenses, mitral valve prolapse, mitral valve regurge, scoliosis, and long fingers and feet, I had no idea what half of this was. I just knew every time I looked at them I fell in love more.
Week one, surgery number one, lenses removed in both girls. Dislocated lenses, glaucoma and cataracts, I can deal with that.
I bring them home, not really knowing what was ahead of me, and I was just ready to take it head on.
I began to research and learn, met some of my closet friends, had support, had help. Now I know I’m ready to take it on.
Marfan syndrome has been anything but easy. I wish I could wake up one day, and for just 1 day Marfan syndrome would not be mentioned, that won’t happen, Marfans made my ladies who they are. That I’m thankful for.
Being a mom of special needs kids has taught me a lot of things. I always planned the “normal” baby thing, I don’t know normal anymore, but I know what my normal is and that I enjoy.
This has been the hardest and bumpiest ride of my life. From ventilators, gtube, bipaps, meds, x-rays, appointment after appointment, week after week in the hospital, ICU to home back to ICU, I wouldn’t change a single thing about them, except I give anything to see Bear’s face, change her diaper one more time, cuddle her one more time.
I don’t hate anything, but Marfan I hate, and I lost my Klaire Bear with complications due to Marfans, something NO mother should have to deal with. But thankfully, she lives through her sister.
So from here on, I don’t plan, I just thank God for my everyday with my Kylah.
And the fact that she is growing so well, tall of course, but found a positive her height, for now anyway, we get to shop more often :-).
She may be delayed her in progress, or she may not do the things babies her age do, I couldn’t care less, as long as I see her smiling face, we will deal with our bumps and obstacles. But she will get there, just because she has the biggest team cheering her on.
We have the best of the best contacts, became close friends with wonderful people, have the best possible care, that part makes me smile.
Thank you so much Maya, for letting me write this, I feel honored to be writing for Musings of a Marfan Mom.