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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

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Release: A NICU Fairytale

I was in the NICU with my daughter, Charlee for 48 days. It was not a good place for us. After Charlee failed a swallow study, it was determined that she needed a g-tube. That surgery was hard on her. After that, doctors ran a sleep study. Computers recorded indicators of airway obstruction and with that data, NICU doctors urged us to consent to a tracheostomy for Charlee. We didn’t feel Charlee could handle another surgery and we declined. We were discharged shortly after. Within twenty-four hours, we were back in the emergency department. Admitted to the PICU, they found that Charlee had a collapsed lung caused by a pleural effusion. The computer had misread her shallow breathing caused by the condition as obstructions. She didn’t need the trach after all.

I was upset that a collapsed lung had been missed in the NICU. I was upset that the recommendation of the trach, a decision so weighted for our family, was not more carefully considered. And I was upset at how it felt like the NICU washed their hands of us because we declined the trach. I didn’t have time to voice my anger because I was consumed with round the clock care Charlee required at home and preparations for neurosurgery. Charlee had a condition called hydrocephalus in which excess spinal fluid was building up and putting pressure on her brain. Like the providers in the NICU, we didn’t feel like decisions made were right for Charlee. We were running out of time and proceeded with the recommendations of the neurosurgeon. An attempt to surgically create an opening in the floor of the third ventricle failed and we were back in the emergency room ten days later for a shunt placement. I felt like everything that I had to hold in was going to explode if I didn’t get it out somehow.

While Charlee was recovering in hospital, a family support worker had dropped off a care package. It included a sketchbook and colored pencils. While Charlee slept, I drew ships rolling in whirling waves and clouds playing in the wind. It was a good distraction, but then I drew out a cartoon poking fun at the hospital culture to vent my frustration with the lack of patient space it provided. It felt really good. After that, I started to draw out Charlee’s NICU story in a graphic novel format. As the story started pouring out of me like an opening dam, I felt my anger lifting. It allowed me to work through what transpired during our time in the NICU. The more I worked on it, the more I felt I took back control over the events that happened to us. And I felt like I found some beauty in those traumatic events as the love and devotion we had for Charlee shined bright through the darkest moments of the story. I called the book Release: A NICU Fairytale ultimately because it was about Charlee’s release from the hospital, but also about the release of emotions this project gave me.

#NICU #Trauma #MedicallyComplex #MedicallyFragile #Healing #medicalmama #Disability

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Unspoken Acts of Love

I can hear your chest rattling like thunder.

We both know what this means,

We both dread what is required.

With a click, the machine is on.

Your eyes pop open wide,

Distress is noted by the dilation of your pupils

And the stiffness that cascades through your muscles.

It’s time.

Time to do the thing that we both hate so much.

As the suction catheter

Moves down your nose and to your throat,

You look at me with sheer fear and frustration.

You fight me by moving your body

In ways we rarely see you perform.

You are pissed.

We hate being the perpetrators of your anger.

And then comes the cough.

And up comes the culprit.

Relief soon follows.

You sigh.

The thunderless sigh we have been waiting for.

It’s 11:58 pm when I press send.

Off travels a strong-worded letter.

Begging a faceless insurance entity to see your value

and the benefit of providing you

With the comfort you more than deserve.

I walk downstairs and reposition you.

Warm on your makeshift chair

That your body has quickly outgrown.

It takes my full weight to shift your own.

But we fumble around to do it anyway.

Soon I am underneath your warmth.

Your breathing is unlabored when in my embrace.

I caress your hands in exchange for

Long stares and blinks of loving approval.

With a clear and deep breath,

I have received your forgiveness.

My lap grows numb as you fall into a deep slumber.

I hold you just a bit longer.

#RareDisease #MedicallyComplex

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Fade to black

If you, or your child has faced any kind of diagnosis, especially a complex one, then you’ll probably know what I’m about to rant about here. The people that fade away. Your friends, and family, that slowly stop giving a sh*%. They might still send you a stupid letter during the holidays, to prove how amazing they are… maybe they’ll even send a gift for you or your child that you said can’t be used, won’t be appropriate, etc. because they think they know better, or it’s the (lack of) thought that counts. But, for all the stuff that matters- the day to day support, the celebration of inch and milestones, the “unconditional” love- they have faded to nothing.
My open statement to these people would be: You cannot cherry pick which siblings you’re family to. You cannot decide that when it’s convenient for you, love happens. It doesn’t work that way. You can’t pretend that you care, when you only do so to make yourself look better. You can’t decide that a grown up or child isn’t worth your time because they don’t fit into your mold, and then act hurt when you’re not recognized. You can’t NOT be there and expect to be praised for showing up.
My first born and her little sibling have had vastly different experiences with extended family (as in, she has one and he doesn’t), and friends- and that’s not okay. It’s not okay that she has been held by her uncles, and he wouldn’t recognize them on the street. The most not okay thing about this all is that the only reason for this difference his his disability. I’ve decided to go ahead and let their scene in our lives fade to black. Because they don’t deserve even a walk on role now. I hope you do the same, because you’re worth more. Your kids are worth more. End that sh$@.
#MedicallyComplex #RareDisease #rant

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You Are Invited!

For the first time ever, I am premiering a video. This video is more important than I can put into words! You, my sweet friend are invited to my Pheochromocytoma Attacks and More watch party on YouTube: Monday May 17th at 10 am est. Be sure to bring a friend and share the link!!! Don’t forget your party gear: a drink, fun snack, and cute and comfy outfit.

An amazing YouTube friend (subscriber), recently asked what happens during a Pheochromocytoma attack? I wanted to sit down to explain a little more, what is a Pheochromocytoma? I also talk a bit about the Adrenal glands and Adrenal Insufficiency. What is an attack? I go into as many symptoms as I can with as much detail as possible (with my foggy brain). There are tons of resources in the description for curious minds, care givers, patients, or anyone with a heartbeat.

www.youtube.com/watch

#Awareness #Cancer #RareDisease #adrenalgland #adrenalinsufficency #addisions #ButYouDontLookSick #InvisibleIllness #RareCancer #MedicallyComplex #MentalHealth #MentalIllness #mystory #symptoms #ChronicPain #attacks #Pheochromocytoma #pheo #NETCancer #NeuroendocrineTumor #Tumors #Pain #HighBloodPressure #AdrenalGlandCancer #AdrenalGlandTumor #Caregiver #Education #notalone #Hope #ChronicallyHopeful

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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

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Waiting...

Did you wait too? Maybe you were waiting for a miracle... or a different answer. Maybe you were waiting for your child to “catch up” or “grow out of” the challenges they face. Maybe you’re waiting for yourself. One of the most challenging steps for me was accepting “permanent disability” as a reality for my child. So, I waited. I waited apply for a Medicaid waiver. I waited to become an official caregiver. I waited to say “yes” to equipment. I waited for a miracle. I also waited for a diagnosis, working under the assumption that if we don’t know what’s actually wrong we couldn’t possibly know how long it would last. I waited, thinking if we just give more time, then things won’t look the way they do now.
And I regret it. I don’t regret having hope for change, in fact, I still have that hope. But, I regret having my hope delay services and equipment that have been wildly beneficial. If I could go back and tell my old self- that nervous new special needs mom self- not to wait, I would. I would also tell myself that accepting a situation doesn’t mean you invite it. Allowing reality in doesn’t mean that things can’t change or progress won’t be made- even if it looks different than the progress other families might have. What would you tell yourself, if you could whisper into your own ear at the beginning of your journey? #SpecialNeedsParenting #MedicallyComplex

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I see you too

It’s hard to look past you, the parent with the child who has medical needs with the bags of equipment, the beeping, the machines. It’s hard to look past you but I see right through you.

I know what your night was like, even when your child sleeps you don’t. Even after a good day your mind still races to the bad. You lay in your bed at night and cross the finish line just to wake up and start the race all over again. Your days are filled with things you never thought you’d experience. You didn’t picture it this way, your life. The photo that hangs on your wall of your family wasn’t exactly the image you imagined in your mind, but it’s one you wouldn’t change for the world.

That smile you wear doesn’t come as effortlessly as it looks. It’s hard to hide your sleepy eyes under your makeup and those clothes might be worn for three days. You are selfless and you wear it beautifully. I know what you go through, I know how you feel, I feel it too.

On your weakest days you are stronger than you know. Your strength inspires others, it inspires your child. You may look at them as the hero, as we all do, but I hope when you look in the mirror you see the same.

Today may be tough and tomorrow might be too but don’t let this race be your last. Each day the finish line will come easier than the one before.

I see your medically fragile child, I see your bags of equipment I hear the beeping. Most importantly I see YOU.

-Becky Conway
-Just another medical momma-
#MedicallyComplex #keepfighting

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