medicalmama

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

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

When we first came home with AJ, I was really self conscious about doing his medical cares in public.

I would take his stroller outside of the restaurant to suction him. I would schedule our trips into town and stores to be in between his meals and meds so that I wouldn’t have to do them in public.

It wasn’t because I didn’t know what I was doing, it was because I was afraid of offending someone else. It was because I had read stories from other parents who had been confronted by strangers, or were even asked to leave a restaurant because caring for their kid was “gross”.

I really wish I could go back to the me who thought that way and shake some sense into her.

First - I was setting a ridiculous example for AJ, showing him that he should essentially be embarrassed by his medical cares. I don’t want AJ to grow up thinking that he should try to hide himself from the rest of the world for any reason - medical or not.

AJ has just as much right to experience the world as anyone else. I would actually argue that he has fought so hard for his life that he deserves those experiences more than most. His medical needs should not hinder him from getting the most out of his life - even if that is just a trip to Target for groceries. (Well, except during cold/flu/rsv season when we go into lockdown, but that’s a whole different story!)

Second - If AJ needs to be suctioned, then he needs to be suctioned. If it bothers someone at a table in a restaurant, or in the waiting area at sports clips, then oh well. And the same can be said of him getting his meds and food.

Maybe it sounds harsh, but those meds and cares are what keep him alive. If it ruins someone else’s meal to hear a suction machine then oh well. That person will live just fine without finishing their loaded mashed potatoes. AJ, on the other hand, might not live without his cares.

Third - People in general really aren’t mean. They may look quizzically at you, or do a double take. They may turn around to see what the noise is. They may even ask a question or two. But we haven’t had one person say anything negative to us at all while we have been out and about.

In fact, we’ve had more of the opposite. People will tell us they think it’s amazing that we are able to get out and see the world with AJ. Or they will tell us how cute or sweet he is. We’ve even had strangers anonymously pay our bill at restaurants.

Ultimately, if someone has something negative to say or are offended by the medical cares he needs to have done while we are out and about, the real problem is that they’re missing out on seeing the truly amazing kid that’s right there in front of them.

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#DownSyndrome #trisomy21 #t21fam #TheLuckyFew #TrachMom #Trach #Tracheostomy #Gtube #blendeddiet #blenderizeddiet #medicalmama #SpecialNeedsParent #Awareness #Acceptance #targetrun