Many of you have probably heard about the struggle of my oldest daughter with her Fibromyalgia and how we strive to help make her life better, advocate for her and when necessary become her foot soldier going into battle for her. What most of you do not know is that this was not my first experience with a child dealing with a chronic condition.
Many years earlier when my youngest was eight she was
diagnosed with migraines. I was clueless, I didn't know an
eight year old could get migraines. I was shocked when the
doctors told me they could only give her meds to help reduce the pain but she could not have anything to help prevent the migraines because she was too small. And to make matters worse, the meds they could give her didn't work very well and caused her to get extremely nauseous. Basically all she could do was white knuckle it through the pain.
Whenever she got a migraine our home went on shut down... no noise, no light. I put up black out drapes in my room and when the migraines would start she would ride it out on my bed in complete darkness with me sitting on the floor next to the bed praying for her to finally be able to go to sleep and escape the pain.
In time, we figured out some of the things that would trigger or escalate the migraines such as too much light (including sunlight) an empty stomach and stress. At home or in family situations we were in control and could manage the triggers. This was not the case when she was at school. It amazed me how some people at the school didn't take her migraines seriously. Keep in mind I didn't know anything about migraines until my daughter started to have them and the people at the school, just like me, probably didn't realize that a young child could get a migraine so I didn't blame them.
I had given them all the documentation from her doctor, her prescriptions were kept in the nurses office along with instructions on how to manage her migraines including keeping snacks in the nurses office. The #1 instruction was "call Mom". Time after time my daughter would tell me that either the teacher wouldn't let her go to the nurses office or when they did the nurse (sometimes the office staff) would make her sit in the waiting area to see how bad the migraine would get. And to make matters worse, they would wait to call me. Each time she would tell me about an issue I would go back to the school to try and work this out. Back then I was not very confrontational (some of you that know me will find that hard to believe)
After going to the school several times, she finally got a full on "banger" migraine and they saw with their own eyes how bad these got. From that point on they learned their lesson and did everything to according to the doctor's instructions. Equally as important I learned my lesson. I learned how to step it up and fight for my child.
I learned that when it comes to my children I do not need to be polite and non-confrontational even with those in authority.
I learned how to keep going up the heirarchy chain to get to the person that can do what is necessary.
I learned to be persistent no matter how many phone calls or trips to the school it took or as my Grandma used to say "the squeaky wheel gets the grease".
I learned that when it comes to my daughters, I will be a bitch.
What I didn't know at that time was how important these lessons I learned with my youngest daughter and her migraines would become crucial in my older daughters struggles with Fibromyalgia.
Until next time... Mrs. Crowley
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