Wednesday, September 4, 2013

4 years

Tonight I tucked my 3 year old in for bed for the last time. Tomorrow night, when she closes her pretty eyes, she will be 4 years old. For all mothers, seeing their children grow is met with mixed blessings. We are excited to see them learn and develop but sad to lose our baby. This is even more so for a mother of a chronically ill child. Each birthday we celebrate as a success, a battle of will, determination and medical progress which has given her another year of life. But each birthday also reminds me of all that she has lost and the things that can't be done. This year is a perfect example as I planned a party for her for the first time since she was a year old. This year Audrey has looked forward to her birthday unlike all the others. So we bravely set a date which is the big unknown when you live half your life in the hospital. Sure enough we have spent the past week inpatient. While we are out before the day of her party, this admission has left her tired and weak. Our house is a mess from the 3 deliveries of supplies which came during her stay. I am emotionally drained. This is her 6th admission in the past 8 months. The only months she was not inpatient was February and June though both of those months had procedures and appointments in the hospital. So I have rescheduled her birthday party. I hope by next week I can pull everything together, including myslef, and give her the party I have been planning for the past few months.

 Tomorrow, we will be going to Disneyland. Yes I just said she is tired and weak and yes it has been over 90 degrees with probably as much humidity, but this is what she wants and I cannot find it inside me to keep denying her the ability to live like any other 4 year old. So tonight I'm packing. A day spent at disneyland is a big undertaking for her and the weather only complicates it further. She has medications due every 6 hours, some are refridgerated and some are not. She has oxygen tanks to be packed and cooling vests with extra ice packs. Every night at 7pm I change her IV fluid. She has one bag which contains all of her nutrition (TPN) and one bag that has continuous medication, once again one is refridgerated and one is room temperature. Room temperature is not 90 degrees. That means I will need to plan where I am at at 7pm. In all likelyhood we will not still be at Disneyland since that is a very long day, but we cannot be sitting on the 5 freeway in traffic either. I will also need to bring extra IV fluids. Dehydration can happen suddenly and severely in mito kids and Audrey is at high risk right now with her new medication regimen. I have a feeling we will be saying hello to Disney's wonderful first aid staff once again. But all this is worth it. I will gladly do all this and a thousand more tasks to make her happy. To let her have a day that isn't about hospitals and doctors and medications. My birthday present for my sweet girl, is for a year of doing all the things her 4 year old self wants to do. I would like a year where I can schedule doctors appointments around her school and activity schedule instead of the other way around. A year when she thanks me at night for going to Disneyland instead of going to the hospital. A year when she doesn't learn about her body through invasive tests and procedures but through growing and exploring like any other child. I want my daughter to have one year as a normal child as she hasn't had since she was a year old.

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