Friday, October 14, 2011

Spina Bifida Awareness: Meet Emmett!

Today we meet mister Emmett!! Here is what his wonderful mom, Charmaine had to say about him:

It is funny the things that remain static in your memory during the most traumatic and the most wonderful events you will ever endure. It was a cold, wet, rainy November day and we were so excited, like every new parent’s should be. We went for the first ultrasound, John and I were guessing the babies sex when she left the room. She came back in, and said there were some anomalies. We had a second ultrasound that day. This one with all the bells and whistles every mother wishes they could get, including a print-out of the baby. This was supposed to be a consolation I suppose, for the terrible news they had to bestow on us. First they showed us where and what the defects were. Hydrocephalus and clubbed foot. Then they showed us the opening: a black and white spec on a sterile screen. Then they showed us his face again……

His hands were up over his face and remained like this through-out the pregnancy. I was instantly in love. Whatever the Doctor said to us, sounded muffled and almost appeared like background noise. That night it was all we could do, read information, layer ourselves in print, read worst case scenarios and view the pictures. Fear over-swept us for hours, then suddenly, as quickly as the fear came, the fear went. We stopped reading and looking at everything, and decided to live it one day at a time. I am so glad we did!

Emmett Logan Francis was born March 19th, 2007; three weeks before his Easter due date. His arrival came swiftly, water broke and one contraction; then an emergency c-section. I won’t lie to you. My first memory of Emmett outside of the womb is not a happy memory; it was frightening to say the least, all of the cables, wires, needles, beeping, the nurses coming and going. I just wanted to hold him, to touch him without a sheath of plastic between us. It felt like he belonged to everyone else, that he belonged to all of the Drs and hospital staff. I never prepared myself for this.

We left for home on April 3rd and returned on April 8th, Good Friday. Emmett’s shunt was not draining properly, they monitored him for a couple of days, and everything turned out fine. What a relief! Only to return around a month and a half later: this time I was changing Emmett’s diaper and noticed something poking out of his scrotum. His shunt tube had migrated down through a hernia into his scrotum on the left side. We were told the chances of this occurring again were slim to none. One year later we were back, he had one on the right side of his scrotum.

We pushed forward, months of Early Intervention, physio, and OT later, he was holding his head up, and he was trying to squirm around. With the assistance of many hours in a Bumbo chair. Emmett finally began to sit up on his own. Our Orthopedic Surgeon at the time told John and I that he thought “he’ll never weight bare, so give him the caster cart so he can get used to wheeling”. We were so insulted. We insisted on the surgery for Emmett’s clubbed foot. Thank god we persisted; Emmett began to stand with assistance at two years eleven month. If at first you don’t succeed try, try again. Emmett was tenacious and persistent, and had a very strong motivator come along to push his need for mobility….

During the month of October 2007, just seven months after Emmett’s birth, we were given a surprise. We were pregnant again. Naturally this was not planned, but welcomed. I had been continuing my prenatal care through-out the past six months, our first ultrasound rolled around and we found out we were going to have another boy, and this one did not have any anomalies. Liam Cayce Francis was born on July 17th, 2008, nearly eight pounds of baby with huge hands and feet, sixteen months after Emmett’s arrival.

During the months after Emmett’s surgery he persisted and began to army crawl (cast and all). The entrance of Liam into Emmett’s life was an incredible factor in his advancements in mobility and gross motor skills. Emmett wanted to do everything that his younger brother was doing. I still remember the day I went into the kitchen, and came back out to find a certain young man had climbed up onto the couch from his chair. The shock and excitement was fantastic, it was definitely a “Take That Spina Bifida” moment!

At two and a half Emmett still did not talk with the exception of a sound here and there. In August of 2009, Emmett had a seizure, just a week afterwards a shocking thing occurred. Emmett began to speak. It was such a wonderful surprise.

One cool October morning, Emmett would not wake up. We took him to the local hospital, three hours later we were back at the IWK Children’s Hospital, and Emmett was getting a shunt revision. His shunt had blocked up by his neck, the neurosurgeon removed the chunk and brought it out to me, the surgery was successful. Not long after the surgery Emmett began doing a lot of interesting things we were told he would probably never accomplish.

2010 was an incredible year for Emmett in terms of mobility, weight-baring, etc. He received his first AFO: then a standing frame, then he began walking behind his plastic chair from his table, then walking while in the stander.

He then refused to use the standing frame. He wanted to walk. He wanted to run like his brother, he wanted to go, go, go…..

By the time Christmas 2010 rolled around, I knew I had to do something to help, to give him that wish. We began to fundraise. I first purchased the walker. “Goldie” and Emmett became instant friends. I called the Spina Bifida Clinic, because no one had suggested any of this for Emmett. Everyone, including his physiotherapist felt he wouldn’t be able to move his hips properly. Boy, were they wrong!! Preparations went under-way, he was fitted for two KAFO’s and a wheelchair for longer distances. By Summer of 2011 Emmett had his wheelchair. He is growing up so quickly, at four and a half, it’s hard to keep up with “Wheels Francis”.

In the Spring of 2011, Emmett proved he had the power and agility to move, to prove the Doctors wrong. When someone tells you the worst case scenario; don’t believe it. Plan for the worst, but always, always hope for the best. You just may be surprised where your hopes can take you.

I am so glad that I was given the opportunity to experience this journey with Emmett. He has helped me grow in ways I never knew were possible. Isn’t that what love is all about?

"Motherhood is about raising and celebrating the child you have, not the child you thought you'd have. It's about understanding he's exactly the person he's supposed to be. And, if you're lucky, he might be the teacher who turns you into the person you're supposed to be." ~The Water Giver

Thank you Charmaine for sharing your awesome little man with us!!