Becoming Princesses

On the day we were supposed to be meeting Disney Princesses, my daughters BECAME princesses instead.

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This is the story of how we decided to face the storm of Hypotonia as a family.

For those of you who are new to our story, my name is Sharon Stone. I married my best friend, Richard, at a young age. We have beautiful twin daughters that we conceived through IVF. Love What Matters and Ellen Nation featured our IVF story, which you can read by clicking here. 

My daughters were born at 32 weeks and spent nearly 9 weeks in the NICU. They facedIMG_7328 breathing difficulties, infection, and jaundice. They also dealt with severe acid reflux for the first 5 months of their lives that resulted in esophagus damage. They were hospitalized again in April, at 10 months old, for a minor virus.  They were consequently diagnosed as immune-compromised. We had to make some changes as a family in order to give them more time to strengthen and grow. We made the tough call to postpone our 2 year long-awaited vacation plans, a Disney cruise. Our vacation was actually supposed to happen this month.

It may not seem like a big deal to most people, but this trip was the “light at the end of the tunnel” for us. Our whole family had just been through the hardest year of our lives, and we wanted a time to reconnect and heal.

We decided to count our blessings and take one day at a time. Several months later, we noticed something was wrong when our daughter Lani started trying to stand. She would fall quite often, even while holding on to something. Her right leg kept turning in, and she would get super fussy if we tried to correct her posture. Several more months passed and our other twin, Libby, started walking. We were thrilled! Libby must have known her sister was struggling though, because she only walked whenever Lani wasn’t watching. We could all feel it, something had to change.

We started physical therapy with Lani, which really helped her flourish! She started walking, and even learned how to stand up on her own! Despite all these accomplishments, something was still wrong. Her ankles still wobbled, and her right leg continued to turn in as she walked. I had a sense of uneasiness, but I was still in total shock when her therapist broke the news to me. Lani has Hypotonia of her lower extremities, which means she has poor muscle tone. Muscles can be weak or strong based on how you work them, but that is not the issue. Muscle tone has to do with how your brain talks to your muscles. Lani was born before her brain and muscle communication finished forming. Hypotonia isn’t something you “grow out of,” you simply learn how to cope and overcome.

At only 15 months old, my daughter has a great awareness of her condition. Lani has learned to take breaks often, so she doesn’t fall as much anymore. She constantly wants me to carry her and she will point to where she wants to be taken.

Lani is not lazy, she is in fact one of the hardest workers I know.

IMG_0801She pushes herself at therapy and rarely complains. Lani needs braces called SureStep SMO’s to help correct her alignment while walking, and to prevent her from injuring herself.
Somehow the braces made the diagnosis seem more real, and so it was a process of coming to acceptance. We have no idea how long she will need braces, or how long she will be in therapy. What we do know however is that our whole family is a part of this journey.

 Libby attends therapy sessions with Lani, and she has already learned to clap for her sister. The twins have been at every single doctor appointment together, and you can see they constantly keep an eye on one another. So, it only made sense to make it a family affair when we finally got to go pick up Lani’s SMO’s.

There was about a 5 week wait after getting fitted for her SMO’s. During that time, we wanted to do everything we could to prepare Lani. We started calling her braces “princess shoes” to get her excited about them.

On the big day, my daughters and I all dressed up as princesses from head to toe. They both giggled when I carried them to the mirror. You could tell they felt beautiful, and that Mama in a tiara was a hilarious sight to them.

Lani couldn’t stop smiling when they put her braces on, and she immediately started walking around with pure joy! Afterwards we stopped to get both twins new sneakers, which we also called princess slippers. Lani needs shoes to go over her braces, and of course princess Libby couldn’t be left out of the fun! As you can see, our day was magical.

On the day we were supposed to be meeting Disney Princesses, my daughters BECAME princesses instead.

We had a choice to make: We could either feel sorry for ourselves for continued medical trials and a missed vacation, or we could embrace our own story. The storms of life are inevitable, but sometimes you just have to throw on a tiara and face them with a smile!

Hypotonia will not stop us or define our lives, it is only one chapter of our book…which happens to be my absolute favorite story.

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Hope Orthotics

Dresses by Take Courage Boutique

To read more posts about Hypotonia and NICU life, click the links below!

Hospital life and Hypotonia: when the NICU follows you home…

Celebrating 365 days with our NICU grads!

A letter from the NICU

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