Madisyn

Feb 3rd would be the 5th birthday of my youngest daughter Madisyn. She passed away just 2 weeks later on Feb 17th. People have ask me about her and have wondered who she was so here is the story of the toughest little girl that I have ever met.

Madisyn was born Feb 3, 2005. She was born missing her left eye. When she was delivered I noticed as the nurse was cleaning her off that she shook. I asked if something was wrong and the nurse told me that her blood sugar was low. Something inside me said that wasn’t the case and I somehow knew that she was having a seizure. Then I noticed that she wasn’t opening her left eye…I knew something was wrong. Madisyn was put in the room with us for the next couple days and we noticed that she couldn’t feed real well and would have the episodes of shaking (seizures). Then the days came that the doctor said they wanted to do an mri on her head to see if she had an eye in the socket. We knew things were dreadfully wrong when a few hours later the doctor came in with a peds ICU nurse. He was crying, she was crying and he had a piece of paper in his hand that changed our life forever. He told us that she was not only missing her eye, but also parts of her brain. We were given a few minutes with her and then she was whisked off to the ICU. Over the next few days Madisyn’s seizures increased and soon after we found out she was the 29th little girl in the world with Aicardi Syndrome.

Madisyn spent the next year fighting for her life through 1000+ seizures a day…yes, 1000 or more a day sometimes…I cannot tell you how heart wrenching it is as a father to sit and hold your child, who you would give your life for, sieze all day and all night. The only thing you can do is hold her and cry. Yeah…being big, strong or anything else isn’t enough to fix it. I sat, cried, begged God and sat with my wife as we loved this little gift from the Lord.

Madisyn defied all odds and made it the first 6 months, in and out of the ICU, living at the Ronald McDonald house and then had a seizure that I couldn’t stop with any med. Then she fell asleep…she wouldn’t wake up. I knew in my heart that she had a stroke. OK, let me back up a second…

We were told that Madisyn would never recognize us, she would never eat (she had a “g” tube put into her stomach because she couldn’t swallow), never be able to raise her head or do anything. The seizures were just killing her. Just before the stroke she raised her head when I called her and smiled at me. that moment was so amazing…and then she seemingly was gone.

Madisyn was in a coma…we were told as we were so often that she would die and maybe in the next few days, but certainly in the next few weeks. 3 months went by and our little girl was “out”. She would breath and sieze and we waited for the fateful moment when she would leave us for good, but 3 months later she woke up…just a week before Thanksgiving! That was the most phenominal holiday of my life!

Now, Madisyn was completely incapacitated and started her therapies to help her as much as we could. She got stronger, but the stroke made her start over again! We started having troubles with insurance companies…one tried to pressure us into pulling her “G” tube and starving her to death while witholding water too. How could I do that? How could I be responsible for the death of the little girl who I fought so hard to keep with me for as long as I could? Of course I knew that Madisyn would leave us, but we were determined to give her the best quality of life we could while she graced our family. How could I take her life? My faith in Jesus would not allow it nor could my conscience! How as a father could I even consider it? Didn’t she deserve better than that?

OK, OK…over the next year Madisyn fought terrible seizures…more than we could count. I would carry her through the house and sing to her and she loved it…she would smile and daddy would love all over her. I would take her into the pool and would let her float with me while I would hold her. The pool seemed to liberate her, especially since the only thing she could move voluntarily was her fingers.

So often I would take her outside during the day and sit under a tree…let her feel the grass while I held her between my legs and let her lean against me. Since she couldn’t move I would do it all for her…mover her arms, put leaves in her hands and let her feel them…let her feel the bark of the tree, or let her get her hands in the sand…she really seemed to love the textures…

Through the next year we fought for Madisyn’s health. She would get constant treatments for breathing, meds for seizures every 3 hours and countless other therapies in a day. I wish I could tell you the physical endurance this brave little one went through, but always had the time to smile at daddy or mommy through or between seizures. On good days she would have 25-75 seizures or so, but when she had a bad day you just couldn’t even count them.

Madisyn made it to her 2nd B-day and then 2 weeks later came that fateful night I was caring for her. I had my other two kids home with me and was trying to care for Madisyn too. Now, Madisyn couldn’t swallow so she had to have her mouth suctioned out every few minutes to keep her from choking on her own saliva so her care was exhausting (I would do it again in a heartbeat!) as I was suctioning her mouth out I noticed she started another seizure. This one seemed to be more violent than usual so I imediately got out her emergency seizure med and started to give it to her, but then I noticed she was making a clicking sound with her mouth and I knew she was having a stroke.

I called our doctor right away and he came over immediately (yes, he came to us…Madisyn didn’t have much immune system and couldn’t be around others). By this time her oxygen levels were down to 45% and she was turning ashen grey. My wife wasn’t home and I got in touch with her and told her to get here right away that Madisyn was dying. Dr. Kennedy put the bag on her and said: “Your wife better get here quick…she isn’t going to make it long”.

I leaned down and whispered into Madisyn’s ear: “Baby, hold on mommy’s not here”…As God is my witness Madisyn somehow pulled her oxygen sats up to 80%!

My wife got home that night and we sat with Madisyn. She was gone and only hanging on in bodily function by this time and we talked to her and told her it was ok to go home to be with the Lord Jesus and that we were there and loved her. Madisyn made it through the night and at 10am the next morning she just “stopped breathing”. No pain, no struggling…it was so peacefull.

I learned so much from her and miss her everyday…I have never met anyone that was as strong and loving as she was either. She just loved to be held, sung to and she would snuggle right into daddy’s big old arms and smile even though she was always in pain. STRENGTH…I am nothing compared to her.

I cannot wait to get to heaven and see my little girl walking, running, laughing and I just want to hear her call me “daddy” just one time…yeah, just once…That will be heaven for me.