medically complex child

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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


Somewhere in Between

I started something I hope will grow into amazing. Visit!!! This is a project I am passionate about and I want to grow into something wonderful!!! Parents of special needs and medically complex kids are stuck. They're stuck between lawmakers and insurance companies and medical providers;they're stuck between work/life balance. Somewhere In Between is my blog where I share my journey with these in between spaces and I hope to grow a community that is empowered to make change in the world, even if it's small #MedicallyComplexChild #ChildrenWithSpecialNeeds #InclusionAndSpecialNeeds

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Work life balance, when your work is your life.

It’s 6. I responded to 50+ alarms last night. I was teetering on the edge of the bed I share with my child- trying to sleep between blaring lights and loud beeps. A normal night before a normal day. A friend recently complained about “work life balance.” Annoyed with being called at night occasionally-with how disruptive that was, how little praise was given. In my sleep-deprived state, I googled to see what the fuss was about. Forbes had some tips and I read them as a person whose “work” is indistinguishable from their “life.” “Let go of perfectionism.” No one is perfect, but some of us don’t have the option of lowering our standards. There’s never been a day when I thought I did enough- so I guess I’m doing this backwards. As a mom, I try everyday to be better. “Unplug.” Enjoying the moment is something everyone should do, especially parents who understand the fleeting nature of time. But, we track meds, and symptoms around the clock. “Exercise and Meditate.” Does crying in the shower count? (With the door open of course, because you are *still* “oncall.”) Workouts come in the form of running late to an appointment and getting to do all the loading and unloading at warp speed. “Limit time wasting activities and people.” When you’re a caregiver, often your priorities ARE someone else’s. That’s kind of the point. “Change the structure of your life.” This tip revolved around getting out of a rut, and focusing on the tasks you value most. Ruts are critical in a lot of households- without them, mayhem can take hold. I focus on what HAS to be done and that leaves dishes and an immaculate house sitting on the back burner. Delegating was mentioned, and I nailed this one. I got a roomba on sale. And now I delegate sweeping. “Start small. Build from there.” This is the only tip on the list that really resonated with me. The ONLY way that I can imagine having changes occur, is slowly and in bits and pieces. In some of the groups we celebrate inchstones, instead of milestones. Small, maybe, but mighty progress.
So how DO you find balance when your work and your life are one in the same? I still don’t know. I love my job, as a mother. I love my job as a caregiver, although I would give anything to go back in time and take at least some of the struggle from my child. Not because I want to “work” less, but because I want him to suffer less. While the husbands and friends out there are complaining about THEIR work life balance, I do wish some would look around and see the moms (all the moms, but especially those with medically complex kids, kids with disabilities, neurodivergent kids, etc.) that are not only oncall 24/7 usually in unpaid positions (hey! Check out the waivers in your state for paid parent caregiver options), but also don’t have the option of meditating in the park. For me, I think I’ll throw this imaginary scale out of the window and just keep on keeping on. #SpecialNeedsParenting #MedicallyComplexChild #PeriodicParalysis #SleepApnea #Disability #Rare #Laryngomalacia #Pharyngomalacia #ChronicLungDisease #Dystonia

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What if nothing’s wrong?

When you spent years advocating for a complex child, but you’re reminded over and over that things could be worse... you start to question yourself. Or, when a miracle seems to happen and you have a period of time where your child is stable or even improving- you question everything. Have you? We’ve so often gone to see a specialist and “things look good”... and it’s made me, as a mother, question myself. What does good mean? Good for my child compared to his worst? Or do you mean good compared to “healthy” children? I can look at the pages of medical “problems” on the list and see that every single one of them is valid, but at the same time think that because my child isn’t “bad enough” somehow these things don’t count. One specialist clinic that will always be with me is aerodigestive. Over and over again, in the beginning of our journey, they made it clear that our child was not their most important child. They told me to take a nap. They suggested I might not understand how pulse oximetry works. It took years to find what they missed (which was significant) and that involved traveling to another state (and to a much better hospital). We know without a doubt that they were wrong... but their doubt has cast a shadow on every other plea for help. What if nothing’s wrong? What if he’s not bad enough? What if I sound like a nut? A physician suggesting that you, as an advocate, are paranoid.. wrong... or mislead- changes how you approach every appointment going forward. It doesn’t matter, in the end, if you’re correct. it doesn’t matter if a much more respected team finds a diagnosis that was missed. It doesn’t matter if you have very strong evidence to support your worry- what matters is that that kind of situation chips away at your voice for your child. The ability to walk the line between compliance and advocacy gets so much more difficult when you’re faced with the knowledge that there’s a possibility that YOU are being judged, instead of that your child’s presentation is. We recently had a close friend have CPS called on them for seeking another opinion... and it was terrible for them. It was also terrible to see a worst nightmare situation come to life in regard to parenting a complex child. A situation where a mother used her voice to speak for her child, and was accused of doing anything but. They were cleared, of course, of any wrong doing... but that shadow will be with them for every step in the process of medically complex parenting. Their voice was also chipped away at in the most aggressive and invasive way.
We have had some amazing providers that sat down and listened. They were supportive and informative and helped to answer so many unanswered questions. I am grateful for them, but with every email or call or follow up- those doctors who didn’t listen haunt me. And they will haunt my friend. If you’re reading this, my question to you is how do you maintain your voice? #MedicallyComplex #Parenting #RareDisease #Advocacy #MedicallyComplexChild

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Nursing and in home care during COVID-19

Hi, I’m new here. I’m the full time caregiver for my five year old daughter who has spastic quadriplegic cerebral palsy. I live with her, my husband who works from home and our oldest daughter who is 8 and now is homeschooled due to Covid-19.
We have been very strictly quarantined since March 9. When my daughter gets even a cold she needs hospital care so we’ve been home and haven’t interacted in person with people this whole time. Up until about 7 weeks ago one of us would grocery shop, but now we use curbside pickup.
We turned down the opportunity to have in home nursing care in July/august to be safe. I regretted that decision as the school year started and I attempted to homeschool both of my children ages 8 & 6.
We have the opportunity again and I still can’t give a solid yes even with an exposure assessment, the promise of n95 masks etc etc
I’m scared but I also desperately need help and we will be locked down for a very long time to come. Is it time for me to accept the help or should I keep us locked down?
I want to hear if others have let caregivers into their home, your experiences with that and just generally any opinions and reasoning on what you would do in my position. There are a lot more details to share for context but this post is already so long.

Thank you for sharing your stories with me here.
#CerebralPalsy #HypoxicIschemicEncephalopathy #Gtube #MedicallyFragile #MedicallyComplex #MedicallyComplexChild #SpecialNeedsParent #ParentsOfChildrenWithSpecialNeeds #GettingHelp #HIE


A letter to my son.

Dear Wyatt,
I try everyday to put myself in your shoes. I try to see the world as you see it. It's hard, my baby. It's hard to see what you go through. It's hard to relive the last 7 years of hospitalizations, surgeries, doctors appointments, therapies..ALL of it. It's hard to look at the future to know there is more. I cannot imagine how YOU feel. I wish you could tell me. I see you cry, you see me cry, sometimes we cry together. But remember that, I will always be here to let you cry on my shoulder, and I will always be here to cry with you.

Your strength amazes me. That's one thing I love reliving. You ARE SO STRONG. One thing I know for sure, whatever comes your way, you fight your way through it (literally 😘).

I wish I could change the world for YOU. I wish I could give you my voice. My health. My everything. If there was a way, I would. I wouldn't trade you for the world, but I would change the world for YOU. I would make sure the only songs that were ever played on the radio were, Catch by Brett Young, How to Love by Lil Wayne, and Sit Next To Me by Foster The People. See? I pay attention. I can tell when you love a song. You kick my seat when the song is over and then I play it again and you're happy. You have crazy taste in music, as do I and I think that's why we travel so well together.

I wish so badly you could tell us the decisions we make for you are the right one. At 7, you should have a voice to speak your mind and opinions. But no worries my baby, I will always be here to be that voice. And as long as you smile, I will know I'm making the right decisions.

#TuberousSclerosisComplex #tscstrong


"Self-Care for Medical Parents" Newsletter

Here is a link to my second newsletter "Self-Care for Medical Parents! " I have learned much since the days of putting myself last and hope to encourage other parents with self-care. https : // #Caregiving #Caregivers #selfcare #selfcareformedicalparents
#medicalmoms #ChronicIllness #ChildhoodDisorders #MedicallyComplexChild #ParentingAChildWithAGeneticCondition #

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What we wished you knew

What the parent of a rare and medically complex child wished you knew....
#RareDiseases #MedicallyComplex #MedicallyFragile #MedicallyComplexChild #MedicallyFragileChild
1. We will never get over the heartbreak of our child’s diagnosis. Some days are easier... but the grief never goes away.

2. We are lonely. Oh, so lonely. We hate that we don’t get invited to things anymore. Even if we can’t go to things most of the time, still invite us. We miss our friends and it’s nice to know people still want to hang out with us.

3. We are tired. Like newborn phase tired... even if our child is no longer a newborn. Please don’t complain about how your child got up twice last night... it really annoys us.

4. We appreciate help... but we will never ask for it. A simple meal, gift card, or offering to watch our other kids would mean the world to us.

5. We also experience the small things in life more fully and with more appreciation. Every moment is precious and every milestone is a miracle.

6. We feel love deeper. When your child isn’t promised tomorrow... you love more fiercely. There is so much love in every moment.

7. Our life looks hard... and it is. There is nothing easy about watching your child be poked countless times or being put to sleep and taken away to surgery. All the appointments, therapies and medications. Sometimes it’s too much and there just aren’t enough hours in a day.

8. We wish you wouldn’t say “I don’t know how you do it. I couldn’t do it if I were you.” Yes, yes you could. You love your child, so you will and can do anything for them.

9. As hard, lonely and sad as it can be.... this life is also beautiful and rewarding. We wouldn’t trade it for anything.