July 14, 2007 is when I first started blogging about Maryam. Maryam my little miracle baby who was going to have surgery in a few days. Today is that day, four years later. Four years ago, if you were to tell me that I would have a perfectly healthy, happy little four year old girl who was all caught up, eating, breathing and living without any assistance, I probably would tell you to shut-the-hell-up and remind you that you're not helping. I would probably punch you in the face if you told me I would have a 22 month old son who was equally healthy and happy. I take that back, I would DEFINITELY punch you in the face.
We've gone through so much since that day four years ago. Maryam came out of surgery and stayed in the hospital for a few weeks, but less time than we anticipated. Maryam stopped taking a bottle August 4, 2007 just 2 weeks and 3 days after her surgery that was supposed to make it easier for her to eat. May 28, 2009 she successfully made it through the CHOC inpatient feeding clinic. She went in May 4th 100% tube fed and came out 4 weeks later only 35% tube fed. 4 months later, she was eating 100% of her food orally. She had a few trips to the ER, one because she pulled her O2 tank on her head and needed stitches, another few times for pneumonia, (one time she ended up hospitalized for 3 days) and then there was the time she ended up in the ER because she took a header on Mother's day at Disneyland.
Maryam came home on 1/4 L of O2 per minute, 10 medications, a feeding pump and an apnea monitor after being in the hospital for nearly 5 months. During those 5 months she had 3 surgeries, heart, eye and stomach. Since then she's had one more surgery, to close up the G-tube spot. Closure in the best sense of the word. Currently she is on three medications. She has an inhaled steroid to help prevent breathing problems and two antihistamines. She has gone from being delayed by as much as 6 months physically and 4 months cognitively to being caught up and in some areas ahead.
Little Maryam has gone through more in her 4 1/2 years than most people go through in a lifetime. And we as parents have gone through more as parents in 4 1/2 years than most parents ever have to go through. I am grateful that Maryam is doing as well as she is. I'm constantly reminded of how blessed we are. Every time I hear of a baby who didn't make it, or a baby who is struggling I think back to those nights we didn't think she was going to make it to morning. I think back to the nights of researching feeding disorders, sensory integration disorder, occupational therapy tools, feeding clinics all around the world, and how hard it was to read through the tears streaming down my face.
My brain is full of memories I would like to let go. I would like to move on and never think of them again. But I can't. Those experiences, no matter how horrible they were some times, have made me the mother, woman, person I am today. I have to hold on to them so if Maryam ever asks about any of it, I can tell her. I want her to know her story of survival. Her parents' story of love. Her friends and family who prayed for her everyday and called, texted or emailed, or checked on her blog to see how she was doing. She needs to know all of this.
My experiences as a mother of a "special needs" baby has enabled me to help other mothers who seek advice or sanity. I have friends who go through horrible experiences with their baby and they reach out to me. I'm very happy they reach out to me. It helps me know that I've gone through what I've gone through to help people. Not just Maryam and Jax and each other, but our friends and family too.
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