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Tuesday, June 27, 2017

Life of a special needs mom

This week we managed to get away with no appointments. Good way to end out the month. Last week we had 6 appointments in 4 days! Next week we have 2 appointments with a total of 9 appointments so far in July and 9 in August. Between all the kids we see or have seen just about every specialist in the hospital. We currently see 2 different neurosurgeons, 2 different neurologists, genetics, cp/rehab clinic, DDBP, ophthalmology, plastic surgery, rheumatology, headache clinic, and pulmonary. Add in psychology, OT, PT, speech, immunology, GI that we have sen in the past. Things can get quite crazy around here. We have a wide variety of diagnoses and the list keeps getting bigger. My 7 yo has ODD, OCD, and dyslexia. My 6yo has scoliosis, platybasia, Ehlers danlos Syndrome, mild brain stem compression, and migraines. My 4.5 yo has CP, ADHD, epilepsy, intellectual disability, insomnia, periodic limb movement disorder, dysphagia and hip subluxation. My 2 yo has chiari malformation type 1, dysmorphic features, dysphagia, global developmental delays, asthma, and mild sleep apnea. All these diagnoses and so much that comes along with them. They believe there is a genetic link to everything, but they aren't sure what yet. Maybe one day we will have answers, but we love them just the same.
Through the past few years when things really got crazy we have learned who our true friends and family are. We have seen who was there sitting with us in the ICU and those supporting us during surgeries. We have had our share of "Why do you just keep pushing for more problems just let them be kids you don't need all the tests and doctors." We have also had those that cry with us when we do get another hard diagnosis and those who celebrate with us when we hit another milestone. So many that don't deal with our every day lives just don't understand it. Of course we could have it way worse, but everyone's struggles are different. We aren't here to compare and see who has it worse, we are supposed to be here to support each other and help when needed.
Lately we have been dealing a lot with people who just don't understand what we go through. I am a stay at home mom so I can do all of the appointments and everything. my husband is pretty much self employed so that he can make his own schedule and try to help me as much as possible. He works with various friends and family doing jobs like lawn care, fixing lawnmowers, house repairs, painting, and fixing cars. Believe it or not we also have a life outside of the doctors and we have to shop and run the typical errands as well. We try to make the week days for appointments and working and such and weekends are family time. I try to take the kids with me to appointments whenever possible, but that isn't always possible. Sometimes they tell me I can only bring the child who is being seen or sometimes it's surgery, or sometimes it is an important appointment where I need to be able to focus on things being said and done and not on chasing 4 kids around. We have even had a few appointments where it was just me and I couldn't bring any kids. This is where my husband comes in, with being able to help me. Now lately we have had a few instances where the people he work with get aggravated at so many appointments and tell him "we can't work around your appointments. You need to work, not get caught up in all the appointments. Let your wife deal with it she can take all the kids with her or just reschedule." um yea you try rescheduling an appointment that you just had to wait 7 months to get. No thanks. People just don't get it at all. It's not always that easy. I have also had a lot of "can't you just find a babysitter for them?" First off I have 4 kids, if I take one that still leaves 3 kids. Not many will watch 3 kids at one time. Second, I don't and can't trust just anyone with the kids. There are medicines people need to be trained on, inhalers, nebulizers, rescue meds. Plus I have to trust them in case there was an emergency. Do they know what to do in the case of a seizure? What if the seizure lasts longer than 5 minutes or have back to back seizures? Do they know how to deal with an asthma attack? Can they deal with all the crazy behaviors that come along with everything without hurting my babies. There are too many horror stories of babysitters hurting kids that they can't handle.
Through everything I hope that we can start educating others. Not all disabilities are visible. They say it takes a village to raise a child, it takes 2 to raise a special needs child. People need to be taught how to deal with disabilities and the right and wrong ways to deal with things. Maybe then they can have at least a small understanding of what we deal with.
Also I hope to share that we are so much more than our appointments and disabilities. We love to be a family and have fun too.

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