medically complex child

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

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

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

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.