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You know what sucks? Being medically complex. Being the parent of a medically complex child. I don’t mind the doctor appointments, the advocating, the late nights, or the medicines. #SoManyMeds What I hate is watching them struggle because I don’t know how to help. It’s the repeat infections. Their face when they have to go back to the doctor. The fact that they know how to give a blood draw, the names of all their medicines, and are learning that they’re different at school.
It’s having them cry when they wake up because they’re tired. And then, then coming home in tears because they’re tired. It’s the weight that’s placed on them to decide to miss extracurriculars for sleep.
It’s the fact that we don’t know what causes the multiple infections. We don’t know if the treatment is right. Shoot, we have a hard enough time figuring out which medical issue is causing the symptom.
I’m overwhelmed. I’m stressed. I’m procrastinating on tasks because I’m stretched too thin. I don’t know how to do this and be a good #medicalmom . It’s hard.
My poor baby. She was in pain for days. We spent her whole Sunday in the ER treating the WRONG symptom. Two more days of pain. Finally, she’s getting better. But, getting better leads to more symptoms and issues. I just want her to feel better. I want some clarity on how to make her feel better when she’s feeling down. I just want answers.

Being medically complex sucks.


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

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Tonight, my heart is heavy.

This feeling just sits there. It just sits, like a dark shadow, in my stomach. I can’t name it, only feel it.

And it doesn’t feel nice.

Insurance. Doctors. Therapies. Advocating. Forms. Worrying.

How is there supposed to be room for cooking? Cleaning? Fixing?

Self care? Ha. I’m lucky to have time to shower.

It’s midnight. And, tonight, I’m heavy with a burden no one should have to carry.

#medicalmom #Rare #PID #HealthInsurance #Apraxia #AirwayDisorder #chronic


Invisibility Is (not always) A Superpower

I start to get anxious just thinking about it. It should be something so simple, but it’s not. The careful planning, assessing and attention to details is vital. What’s happening before this? What’s coming up in the week following? It’s not a question of if she’ll get run down. It’s not a question of if she’ll get sick. It’s a question of when. And…is that birthday party, week at day camp, sporting event, etc actually worth it?

But here’s one of the worst parts: you won’t get the weight of our decision. You won’t know why we couldn’t play that night or why we skipped the game. Because, the fact is, you don’t understand that she’s sick. Not really.

You know we have the appointments. You know we get blood draws. You even know we spend nights out of town to see our doctors. But, you don’t understand. Your kids get sick, too. Your kids also get tired and emotional. Plus, she looks just fine.

She looks fine. But, that’s one of her superpowers: invisibility. She saves it for us. She keeps it closely guarded. If you ask her how she’s feeling, she’ll say, “Good.”

What you didn’t see was waking up and complaining she was tired. What you didn’t see was the terror in her eyes when she had blood in her stool- again. What you didn’t see was her complaining her belly hurt, or worse- getting sick. What you didn’t see was her retreat upstairs to lay down instead of play. You didn’t see her struggle at school because she “just couldn’t think “ or she’s “just not feeling herself.” The simplest questions tripping her up. What you didn’t see was her breaking down and crying over and over again from 4 pm on because she's so tired that she’s an emotional wreck. You didn’t see the multiple medications she’ takes to help her feel ‘normal.’ You didn’t see her as she got yet another a fever, yet another antibiotic, yet another doctor visit. And, you didn’t see her sleep a full 12 hours just to get up and do it again.

She has a superpower of invisibility. You may not understand why we’re not coming, but I promise we would be there if we could.

#Rare #PID #Fatigue #invisible #chronic #medicalmom

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Parents of Medically Complex Children Aren’t Born We Are Forged

As a parent, if you have experienced pleading to God for your child’s life or asking the unimaginable request (and often unmentionable because it holds a great amount of guilt and shame) for God to take your child home if it would be the best thing for them and would end their suffering, it changes who you are both as a parent and as a person. This kind of trauma and suffering rewires things down in your soul you thought would always be you. The way you process the constant information around you and the lens you use to filter that information towards your overall outlook on life.

I was speaking to a very close fellow mom of a medically complex child a while back and I remember this conversation after one of the hardest days I will ever experience in my life. On this day (and days to follow) I honestly prayed both of these prayers in the same breath because I wasn’t sure what would be best for my baby, but I knew God did. The surrender, grief, love and knowledge you have to embody to make these requests simultaneously is not something anyone would understand unless they have lived at least one of those moments. For us, we’ve lived many, and continue to live them.

Parents of medically complex children aren’t born with special capabilities or super powers. We are forged. God didn’t make us “special” or endow us with a skill set beyond your own. We were, and are, refined by the hottest fire so that we come out with enough change to endure for our children.

Did you know Gold is the most corrosion proof metal, but it’s also the most malleable. It is too soft to withstand the everyday stresses of wear so in the refinement process other metals are added in to give strength and durability. This is what we go through to be prepared to love, nurture, care for and advocate for our children. Honestly, I don’t even believe it is a one time event (my personal experience).

So the next time you see a parent of a medically complex child, don’t tell them how special they are or how God made them just for this, tell them:
I see you
I don’t know what you experience and I know I can’t imagine what it’s like, but I see you working so hard, and doing your best and you’re doing amazing job.

And maybe give them a gift card to get some coffee or a hot meal.

#MedicallyComplex #medicalmom #medicalmama #RareDisease #Parenting #disabilitymom #Disabilityparenting