medically complex child

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    Community Voices

    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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    Community Voices

    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

    Community Voices

    Work life balance, when your work is your life.

    <p>Work life balance, when your work is your life.</p>
    Community Voices

    What if nothing’s wrong?

    <p>What if nothing’s wrong?</p>
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    Community Voices

    Nursing and in home care during COVID-19

    <p>Nursing and in home care during <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5e678dcff3e6f44cb2d93fd4" data-name="COVID-19" title="COVID-19" target="_blank">COVID-19</a></p>
    2 people are talking about this
    Community Voices

    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

    The Emotions of Medically Complex Children

    “Complex” is a word I’m very familiar with when it comes to my daughter. “Complex medical needs” is typically one of the first descriptors when it comes to her condition. Her body, down to her genetic makeup is complex — each organ just a bit different from the “norm,” resulting in issues with her brain, heart, kidneys and bladder. Each illness she tackles is off the beaten path… complex. So complex that I feel that I’ve spent the majority of the last five years of my life explaining her complexity. But one thing that I usually round out my complexity discussion with is, “But E is easy. She keeps it simple: ‘Puffin Rock,’ ‘Daniel Tiger,’ music and food. She is sunshine incarnate.” I can sum E herself up in three sentences. But should I? E has been having more night wakings, but she’s doesn’t cry or scream. She just lays in her bed, shifting around and “talking” to herself (it’s interesting how nonverbal communicators can “talk” so much). We typically check the monitor, laugh a bit, roll our eyes, and try to sleep while she entertains herself, as she usually finds sleep again. But lately, I have been laying awake listening to her, and for the first time in five years I was struck with something: what is going on in her brain? Is she lonely? Did she have a good dream? A bad dream? Is she anxious? Is she thirsty? Is she excited about her day? Is she scared of the dark? For the first time in five years… I allowed E herself to be complex. A medically complex little girl with complex feelings. Do you know how hard that is to face head on as her Mama? To think that her basic expressions of emotions (happy, sad, mad) are not all she feels? To think that she could be lonely, or anxious, or frustrated, or embarrassed, or jealous, or proud, or disgusted, or elated? To acknowledge that her loves of the world may expand past “Daniel Tiger” and food? Reflectively, I can attach different experiences where I feel that she has shown complex emotions. But I cannot stay in that reflection, because I feel I do not know how to accept that she could feel as deeply as I do. I am a deeply emotional person. I am reflective, poignant, and emotionally complex. I go to counseling, I sing songs to work through my trauma, and I talk about my feelings constantly. I write and I process and I speak and I communicate and I think and I do the hard work on myself to help me through all of my very complex human emotions. I have a huge toolbox at my disposal to help me. E does not have much of a toolbox. I do not know how she processes. I do not know how to help her. E’s life renders me helpless more often than not. I’m not sure I can handle another thing that I am helpless to help E. So I lie awake and listen. Sometimes if she doesn’t settle, I will go and lie with her. I rub her back and snuggle her and whisper stories to her. When we are going throughout our day and she becomes quiet and observant. I always make an attempt to reach out to her, a brush of her hair, touch of her cheek, holding her hand. All of this so that if she is melancholy or exhilarated or disappointed or elated, she at least knows she’s not alone as she faces the complexities of herself and the world. I figure, that’s all every single human, with every single one of their complex human emotions needs: to know they’re not alone.

    Community Voices
    Community Voices

    What we wished you knew

    <p>What we wished you knew</p>
    Sandra Hall

    Leaving a Medically Fragile Child to Work Outside the Home

    The baby I was told I would no longer have by this time turned 3 the last Sunday of June. It was a sunny miracle of a day, this day we didn’t believe we would be blessed to enjoy. Heidi was diagnosed with spinal muscular atrophy type 1 when she was 3 months old. We were told she would be unable to breathe on her own within about a year. Her life expectancy was up to 2 years old. But Heidi has been able to benefit from a clinical trial drug. She breathes without ventilation and has more movement and strength than any of us would have believed possible. On her birthday, Heidi went to the mall, saw Finding Dory, shopped for toys and enjoyed her therapy pool. When Heidi was diagnosed in October of 2013, I abandoned practicing law, in part to care for Heidi’s medical needs and in part because I wasn’t mentally competent to practice. I’ve spent the last nearly three years at home with Heidi, caring for her, arranging her appointments, and writing a book about our family’s experience with her. I finished my book Juncture at the Still Point in the spring and I’m sure that writing helped me keep my sanity during the couple of years after Heidi’s diagnosis. Instead of the predicted deterioration and death, however, Heidi has exhibited slow but remarkable improvement. Recently my husband was laid off from his job and I ventured back into the work world. Not the high pressure, fractious world of litigation, as I had been a part of before, just low-paying litigation support projects. It’s low-stress, but also low-paying. It won’t pay all the bills, but if I have to suddenly leave work for an emergency, I don’t have clients who could go to jail or lose custody of a child as a result. Leaving Heidi at home, even with a nurse and her father, is harder than I could have imagined, and for different reasons than I would have thought. Heidi’s medical condition is precarious and subject to sudden emergency, but Heidi’s nurse knows her needs well and her father certainly does. What makes leaving Heidi to work outside the home so hard is simply missing her and missing out on everything that goes into her care. I’m not able to make the calls and emails necessary for lining up her medical and nursing care and therapies. I’m not around to get updates from her therapists. It’s only been a few weeks since I began working on these projects. I don’t take Heidi to her doctor’s appointments or speech therapy. I wasn’t able to go to her Individual Education Plan meeting. Every morning I walk out the door feels like a day of something lost. Though I gave up my previous career in law due to Heidi’s condition, I don’t miss that career. Instead, I now miss every moment that I might spend with Heidi, knowing her life can be unexpectedly taken at any time by a common cold that goes to pneumonia. As Heidi’s condition more often presents as physical disability than imminent death, however, my goal is to work toward as secure and consistent a life as possible. Our family must evolve as our  “new normal” with Heidi continues to shift in directions we can’t predict. If financial hardship sometimes brings knowledge of what is important to people, the disability or chronic illness of a loved one does so much more essentially. Most of us have some sense as we walk out the door to go to work that we are doing so for our families. We want our children to have stable lives that include food, shelter, medical care and a bit of recreation. Sometimes, though, parents get lost in the demands of work and alienated from the reasons for our efforts. Heidi changed this for me. A child with a life-threatening condition keeps a mother ever-conscious of what’s important. Heidi keeps me aware of what my efforts and commitments should be for: happy and engaged time with our loved ones, an awareness I deeply wish I’d had with my older, healthy children. On Monday, before I leave the house to go to my project job, I take a couple of minutes to recall Heidi’s birthday. I summon Heidi’s smile as she watched Dory dart around the big-screen aquarium of neon fish in search of her parents. I recall the wonder in Heidi’s eyes as she worked to propel her little wheelchair around the outdoor space at the mall, a wide-open space new to her. She had later struggled to move her wheelchair with one hand and hold onto her new toy drum set with the other. These are the moments we live and work for. As I miss Heidi today while I’m at work, I’ll remember yesterday and look forward to what the weekend will bring. The Mighty is asking the following: Describe a moment at work that was either incredibly challenging or where you faced adversity. Tell us how you handled it or wish you had handled it. If you are unable to work, tell us one thing you wish others understood about your situation. Check out our Submit a Story page for more about our submission guidelines.