Raising Awareness: Living With Special Needs Day 1

I've got a very special week planned this week. I have 2 children with special needs plus having special needs myself, and sometimes life gets hard around here. For us, most people don't see what we deal with on a regular (non-medicated) basis, so the support isn't there. It's a sad thing, because what my kids (and me!) need most is people who understand their issues and can help them sort through them. This is why this week has become so important to me. Please, if you want to help support us, grab the button above, or from my sidebar, and display it all week. If you would like to join in, every day there will be a link up at the bottom. Feel free to share your own stories that relate to the post of the day.

Please remember that everyone is sharing their own experience, and some of the stories may be longer then others.

I was going to start the week off telling our story (again) but I have so many others lined up, that  I want to wait til later this week, and add it in when it fits the story better.

Today I am introducing you to a very fabulous mother I met a few years ago on the internet. She is the mother of a 3 year old daughter and 1 year old twin boys. I just cannot sing the praises of this mom loud enough. She is so strong, in spite of everything life is throwing her way. She truly amazes me. You can read about her family and life adventures at The Hickok Family.

Her daughter, Mairead, had a stroke as a newborn, shortly after birth. Because of this stroke, she has developmental problems today. The biggest fight they have faced so far is health insurance. The insurance folks refuse to recognize her stroke as she was a newborn when it happened. They only recognize it as something that happens to adults. She is blessed to be able to find new doors opening to help Mairead get the help she needs, and she is currently working on changing the legislation to allow for newborn strokes. Please welcome one of my special needs heroes and her story:

I think every day about just how fragile life is, and how lucky we are to be sharing our lives with our children. Every parent treasures each moment with his/her child. My little girl, Mairead, had a stroke when she was three days old.  Since that day, we have been trying to be even more cognizant of how special she is and how lucky we are to have her. I wrote out her story so that when she is older, Mairead can learn about the ordeal and see just how strong she was when she was only days old. I am sharing it here to try to raise awareness about infant and pediatric stroke, and to share my little girl and her strength.  Thanks for reading.

The morning of August 1st, 2007, started out as the morning I felt most ‘complete.’ We had just brought Mairead home from the hospital the afternoon before, and she had slept three hours at a time over the course of the night. She seemed to be a happy and healthy baby. Dave and I both got up early to get ready for her visit to the pediatrician. They thought she was a bit jaundiced when we left the hospital, so they just wanted to check on her the next day.

I remember sitting in our living room, eating cereal and staring out the window at the beautiful day. I could see the mom across the street get her kids into the stroller for a walk. I was sitting on a comfortable couch in our first home. My husband was in the kitchen doing dishes and playing music for our brand new baby girl. I thought that this was what I had been waiting for and didn’t even know it. Just a simple life- a loving husband, a home, and a child I already loved more than life itself. I took our happiness for granted, just as I took it for granted that I would have a healthy baby. I will never take either our happiness or our children for granted again.

We took Mairead to the pediatrician, just one town over, for her 10:30 appointment. We sat in the waiting room with two other couples who had baby girls. One girl was 10 days old, the other, two weeks. All of us proud parents showed off our darling daughters. The dad sitting next to me commented, “Wow, we are all so lucky to have these beautiful girls, aren’t we?” We all smiled and nodded in agreement.

The office was running late and we didn’t get in to see the doctor until about 10:45. As the pediatrician was congratulating us and looking over Mairead, she commented that Mairead did seem a bit jaundiced, and that we should probably take her over to the hospital for a bili check. We were dismayed- was something wrong? Would they keep her long? Couldn’t we just take her home and enjoy her? 

As the doctor was talking to us about her bilirubin, she stopped speaking mid-sentence and froze as she looked at Mairead. I looked to see what was going on and saw that Mairead had turned her little head all the way to the right, and that her arms and legs were drawn close to her body. Her eyes seemed to roll back in her head, and her color was changing. The doctor said, “Did you see that? HOLD HER!” And she ran out of the room to call to another doctor, “I need help in here!” She rushed back in and took Mairead. I asked, “Is she having a seizure?” For some reason, I just knew that was what was happening. The doctor told me she was, and I could see Mairead beginning to turn blue. 

I heard a nurse call 911 and could barely see straight. Dave and I were huddled in the corner of the small exam room as another doctor and two or three nurses came in. One doctor performed CPR on Mairead as it appeared she had stopped breathing. Once she was breathing on her own, another doctor started an IV in case the paramedics needed it. 

The paramedics came in to the already crowded room and asked for her car seat. We strapped her in and they put it on the stretcher to wheel her out of the office. The other parents in the office and hallways stared in horror as we walked out with the medics and our tiny little baby. We had no idea what to expect and no idea how to react. She was covered with her tiny Red Sox blanket and just looked as though she was sleeping.

I told Dave to call my mother while he followed us in the ambulance. He was visibly upset and the EMT talked to him for a minute to make sure he was ok. I don’t think I was crying. I don’t think I was anything- I just followed the stretcher and sat numbly in the ambulance. The EMT was being very kind and asked me to hold the oxygen mask for Mairead. I think he wanted me to feel like I was helping. I think I thought it helped at the time. I was trying to stay in control and convince myself that she was fine, that this wasn’t happening to us. We had just left the hospital less than 24 hours before. How could something be wrong? She had to be ok. 


In the ambulance, she seized again. The medic called it in to the ER and the voice of the person on the other end crackled over the radio. “Three year old baby?” She said. “No, that’s three DAY old baby,” corrected the medic. “Ok.” Just three days old. So fragile—life is so fragile.





TO BE CONTINUED TOMORROW...

(I know y'all are anxious to find out more. Please come back tomorrow to hear the rest of this courageous family's story. In the meantime, grab the button, and link up if you are participating. Please note that I will not tolerate abuse of the link up and will delete any that do not belong. )