Nobody Puts My Baby in a Corner By Karen Guilbault


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Our baby girl Faith Olivia was born in 2003, weighing in at 4 lbs. 2oz. She was only in the NICU for two weeks until she could take from the bottle. She was a little jaundice, but other than that nothing else appeared outside of the norm.  However, something didn’t sit right with me. I didn’t bond at immediate sight with Faith and I know now, it was the fear of the unknown.  I was scared. And the day Faith was released from the hospital, my fears were realized.  We learned that Faith had Periventricular Leukomalacia (PVL) and that she had an 85% chance of having Cerebral Palsy (CP). When someone tells you news like this it’s hard to put the emotions you feel into words. We were shocked, devastated, angry, and didn’t want to accept it. We knew we had to do more research and seek out second opinions and other alternative therapies. In fact, this was not our first roller coaster ride as parents.

I had my first born J.D. at 28 weeks and he was in the NICU for just under two months.  JD was jaundice, couldn’t hold his temperature, had an abnormal suck, had apneas and bradycardias, reflux, and constipation. He had the feeding tube and was on the ventilator for some time and then finally was able to graduate to faith-and-her-brotherthe CPAP, and had a brain bleed. When he was two and a half years old he was diagnosed with a mild form of Cerebral Palsy. We went to PT a few times, but they showed us what to do with him at home. Now seventeen, you would never know JD was a preemie, let alone ever diagnosed with anything.  However, I believe that everything I went through with J.D. prepared me in many ways for Faith.  I knew she was going to live, but wasn’t sure the quality of life she would have. I knew we had a life long road ahead of us and we had to do what we could to help her along her journey and so it began.  Then in 2007, Faith had muscle lengthening surgery, and two rounds of Botox Injections. All though Faith has had major strides, we’ve all come to accept Faith’s reality—that unlike her brother she will always continue to have struggles with both gross motor and fine motor due to her having CP.

faith-and-her-brother-sittingNow at age thirteen, and despite everything we’ve been through, Faith continues to have a naturally positive disposition. She is a determined, happy, and outgoing little girl.  Faith has always had a wonderful support system in place from the time she was born. Family, friends, therapists, the school staff, and our community as a whole all embrace our beautiful daughter. As they say, it takes a village, and because of Faith we have met some pretty amazing people who have entered our lives along the way.

Faith truly wants to be as independent as possible, which hasn’t always been that easy when it comes to fashion. As her mom, it meant something particularly significant. Getting dressed has not been easy for Faith, or for me for that matter. Often I had to tug and pull and tug and pull her pants to get them over the braces, not to mention the time it took to put her sneakers on over her braces. I would literally break out in a sweat every time and that was just putting them on. It was a struggle taking them off as well.  Seeing Faith’s frustration of not being able to independently dress herself kills me. It breaks my heart, especially the times when I hear her start to cry and I peek into her room and watch as she struggles. She gets upset, cries, and then gets angry and mad, throws her clothes across the room and just balls wishing she wasn’t born this way.  I try to comfort her and talk it out, but then I begin to get frustrated and stressed out myself due to having to then rush to get her ready and out the door in time.

When Faith was younger her cousin loved to dress Faith up in different outfits, style her hair and make-up, and blast the music while she announced Faith out to their own little runway. It madeFaith just light up both on the inside and out, and boosted her confidence.  Therefore, when we learned about the Runway of Dreams adaptive clothing line, we were understandably thrilled!  At first they posted a few photos of Faith as a virtual model and let her do a few videos including one about the struggles she has with dressing.

Now with the ease of the new adaptive Runway of Dreams/Tommy Hilfiger pants, they have an opening at the bottom of the pant legs with special magnets in them to allow you to open them up faith-outfit-oct-2016giving you the room you need to put the AFO’s on and then simply pull them back over and close it back up. These truly are a life saver.

Never did we dream that not only would Faith have a line of clothing that was made with her in mind, but that she would even be invited to walk the runway for it!  The opportunity made Faith feel important, appreciated, honored.  It’s been an amazing experience and we can’t wait to see what’s next for our Runway of Dreams Family!

faith-guilant-familyAnd as for me, I feel honored and proud to be Faith’s mother. From the moment both my children were born, my husband and I have always focused their needs to help them live life to the fullest. Although I have had to set aside different opportunities and a career to make sure they are cared for, as I watched Faith  with the biggest smile spread across her face walk the Runway of Dreams runway in New York City, there was no doubt in my mind I would do it all over again.

 

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