Well the storm came. Just as I sensed that it would. At Least she waited until after her birthday to get sick.
We just spent three very frustrating days in the hospital. Mia lost vision and sight intermittently three times in one day, which was three times too many so we were sent by neurology. Of course her actual neurologist was out of the country and the covering doctor was not only not familiar with her case but she was not very nice either. Sorry to bother you covering neurologist……I am only asking you to do your job that you get paid for (insert rolling eye emoji here).
So as I am pulling into the parking lot getting ready to walk into work, I now have to turn around and pick my baby up from school and take her to the ER. I call my job to let them know. They are not very nice to me and the weight of that weighs on my heart. I shouldn’t care. I should just concentrate on Mia. But if I am honest, it hurts that they don’t understand. I guess that you have to actually live this life to understand though, right?
I get to the school and pick up Mia and off we go. The ER is jam packed but we get in rather quickly due to Mia being immunocompromised and immunosuppressed. Then we get to tell the story of what happened 16 different times to 16 different people because this is a teaching hospital. I know ….the residents need to learn, but it does not make it any less frustrating. Mia is admitted. MRI with sedation is scheduled for the next day. She is dizzy and her neuro exam is not normal.
So upstairs we go to tell our story to 16 more people 16 more times even though it is almost midnight and we are both thoroughly exhausted. We spend the next two days in the hospital running tests and running in place. Neurology feels it is an issue for ENT and ENT feels it is an issue for Neurology. So what have we accomplished? Nothing. More symptoms to an underlying disease process we know nothing about and my baby is still sick. We go home and have to follow up with our out of the country doctor in the city. “But I still feel sick” Mia says and we roll away in the wheelchair. “I know mama” I say with a tear running down my face that she can’t see.
I am so tired. Tired of fighting for answers, tired of trying to figure them out myself. I am tired also for selfish reasons. I am tired that I will never have a normal life. I can not just go to work and come home like normal people do. My bank account is financially exhausted from the past 12 years of living the chronic life. I have lost my house, some friends and what I thought was going to be my life. I am tired because my eight year old does not understand why I spend so much time with Mia and not her. I am tired because there is not enough of me to go around. I can not be a good mom to my other kids, or a good wife to my husband. I can not be a reliable worker to my job. I can not be so many things that I want to be. There is just not enough of me.
The uphill battle continues. We have only pieces of the puzzle. Mia has been sick for almost two years and all we have is puzzle pieces. We know she has resolved HLH, but it could come back. We know she has Crohn’s Disease and some kind of underlying autoimmune disorder. We know her immune system does not function properly and that she may have a seizure disorder. We know that she has a cervical thoracic syringomyelia. We know so much, but we still have no answers on how to make her better. It is not fair.
No happy ending to this blog. No quote on how we can make this into lemonade. Sometimes it just plain old sucks. And that is ok too.