An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence
Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.
I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.
On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.
The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.
Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.
Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.
I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.
I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.
I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.
The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!
I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.
Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.
My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.
I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.
The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver
A few days ago, I noticed a rash on my hands and arms. It ranges from skin colored to light pink, slightly raised, almost invisible, but I can usually feel it by running my fingers over it. It itches like crazy! I’ve been googling it, but coming up with absolutely nothing. I’m wondering if it might be fibromyalgia related? Has anyone else experienced something similar? I’m about to go get some itch cream for it, but don’t have the money for an extra doctor’s appointment, right now. Thanks!
I promise if you only open your eyes to the goodness world, it is there! Regardless of how severe your pain is and this coming from a level 10
Can it still be arthritis if blood panel was negative?
Worsening joint pain since 20s. 45 years old, now, can barely get dressed some days.
I have MCAS, which gives me lots of flu-like symptoms daily, plus migraines, and did not do well with the popular mRNA therapy used world-wide last year. Docs told me no boosters, I reacted so badly, twice: 7 days of burning skin plus fever, migraine with aura and persistent ashtray taste in my mouth, unable to sleep, or move much.
Condition was improving in 2019, and nose-dived in 2021.
Had noticeable pain/numbness/loss of circulation in hands, and toes since my early 20s. My mom had it, too, so I thought it was "normal" and never mentioned it, using ice, heat, topical analgesics, and NSAIDs to cope. Changing from a mouse to a stylus helped the hands a lot, and I just knew there'd be bad days now and then.
This January "now and then" became every single day. Instead of pain that went away with warm water or heat, a burning screaming pain took residence in my thumbs, toes, hips, ankles, and sometimes my neck. Hot water did not help, and even the act of washing my hair became hard to do, my hands hurt. BUttoning shirts, putting on normal bras OR sports bras, pain, even pulling up yoga pants or underwear was painful. Changing clothes at all now can take a period where I have to brace myself before doing it.
Folding laundry is so bad I stopped. Cooking and kitchen stuff I am almost managing, save doing dishes no longer soothes things, but now it still hurts and I am dropping things. I got some "senior" aids to open cans, pop tops, and even a button fastener so I can dress for work (all my work clothes have buttons, can't afford a new wardrobe atm).
I can't easily get in to see my docs, and forgot to mention it at the allergist/immunologist, but mentioned it during my annual to my GP. She had a blood panel run looking for rheumatoid arthritis and other issues, and it all came back negative.
So... what now? Can this be another kind of arthritis? Why would it change so much? I feel like my levels of pain would make more sense for a 65-year-old, not a 45-year-old.
All my past times use my hands. I cannot paint, draw, crochet, knit, or sew much at all anymore. Even using a video game controller can hurt so bad I give up and scroll on my iPad, which is now too heavy to hold on bad days. I am trying everything I can think of. Braces at night to prevent injury in my sleep. Dandelion extract (helps a little), every NSAID under the sun.
I react to menthol and mint, so no Icy-Hot or many menthol-based products. I don't need chemical burns on top of this. I use Aspercreme, it dulls it a bit. My thumb is obviously very swollen most days. My toes feel like walking is going to break them.