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    Community Voices


    I’m just really upset. I’ve had intractable migraine for 14 years, rheumatoid arthritis, depression, and a Bronchial/aortic aneurysm was located as an incidental finding after an x-ray for something else. I am currently consulting with the Mayo Clinic on this because apparently it’s quite rare and severe. I’m lonely and feeling hopeless and would love to speak with someone, anyone who is going through something similar and who has hope when I have none..

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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

    6 people are talking about this
    Community Voices

    Physical pains

    Was just wondering if this happens to anyone else . If I get a headache I think I’m dying or have a brain tumor or an aneurysm, etc. if I get pain in my legs I think it’s a blood clot or something severe. Every pain I get I think I’m dying and it’s so bad I just lose it and call my mom who just says you’re not dying . And my boyfriend says I think If you were really dying you wouldn’t know. Well , these things aren’t helping me. I think I’m dying pretty much every day and it’s scary. My doctor , he just says this is normal with anxiety. This is no life to live. I’m not living if I feel like I’m always dying. I need help .

    11 people are talking about this
    Community Voices

    Kara Trainor

    Finding My 'New Normal' in Life With Expressive Aphasia

    I could not pronounce the word “toothbrush.” I was sitting in the hospital bed, not even able to speak simple words, let alone form sentences. At this point, I could not see the trajectory of where my life was going to go. All I could see was blackness. I had been dealing with a Spetzler-Martin grade 3-4 brain AVM in the left parietal lobe. An AVM is abnormal tangles of blood vessels of the brain. It is a congenital condition that many people do not even know about until symptoms occur. In my case, grand mal seizures clued the physicians in. My course of treatment was an Onyx embolization, followed by a craniotomy 48 hours later. In layman’s terms, my team of neurosurgeons would “glue’” the AVM together with a substance called Onyx, then re-sect the AVM. An AVM resection involves separating the AVM from the surrounding tissue. The other options, gamma knife (radiation) or simply living with it, were not applicable. I did not have a lot of time, as prior testing had revealed that the AVM had bled. Testing revealed a small aneurysm, too, but the aneurysm was little of concern to the team — the AVM had to go, and go quickly, in the neurosurgeon’s opinion. Obviously, I was given the possible outcomes after the surgeries, but somehow, between giving power of attorney to my father (long story) and carefully deciding my wishes in case of a situation where I was placed on life support, I missed the memo regarding planning for a permanent disability following the surgeries. In my mind, I truly believed that I was going to sail through both the embolization and craniotomy to wake up as a new person. Maybe I needed to cling to this notion of being a new person for me to survive? Like a “new brain, new life” philosophy? I don’t know. Either way, to say that I was not prepared is an understatement. I did sail through the embolization without complications. I remember very little of the next 48 hours going into the craniotomy, except a notion of immense physical pain. The craniotomy itself was a five-hour ordeal. My neurosurgeon met with my husband directly after the surgery. He explained that he could not control the bleeding, and that I needed a blood transfusion due to the loss of blood. I found out later that my neurosurgeon thought that I was going to wake up paralyzed on my right side. Instead, I woke up to Broca’s aphasia (expressive aphasia). I could not properly speak or write. There are other forms of aphasia and most come from a stroke or brain injury. PPA (primary progressive aphasia) stems from a neurodegenerative disease. But all forms can be devastating to the individual facing this new way of life. I will never forget the shock as I tried to speak my first words after I woke up. I couldn’t pronounce words and the feeling of sheer panic I felt is something that I carry to this very day. The next 10 days in the hospital were a hellscape of emotions, mainly anger. I swore at nurses, occupational therapists, and physicians. I remember an entire morning spent dissolved in tears, simply because I thought I was “failing” the evaluation tests, including a test that included pronouncing words. When I could not pronounce the word “toothpaste,” I broke down. Never I have felt so helpless, desperately needing connection to other humans in one of my darkest hours, but not able to express what I felt and needed. I could form and execute partial sentences, but not complete ones. Also, I could not write full sentences or grasp the words I needed. Often, and it is still true to this day, the wrong word would pop out — like saying “pounds” instead of “dollars.” The prognosis was unclear, because it was too early to tell how much my brain was going the heal. The AVM and aneurysm were completely gone, and, due to the beautiful neuroplasticity of the brain, there was a possibility that my brain could “re-wire.” The most important and vital thing that the medical professionals did was to foster a sense of hope. Absolutely no one told me that the extent of my aphasia was going to be permanent. Because they believed, I believed. I continued to believe. Even after it was apparent that I could not go to a rehabilitation facility for the recommended four to six weeks for intensive therapy, due to the fact that I was one of the only caregivers for my profoundly autistic son, I took the seed of hope with me. The next couple years, sans formal therapy, were not butterflies and rainbows. My informal therapy for my speech and writing was to copy words and sentences over and over again. Also, I practiced my speech by watching “The Family Feud” multiple times a day, so that I could use my words quickly. I now know that I was grieving, too. Grieving what I lost, that person that I once was, and I remain still somewhat grieving. The action of talking to anyone, especially strangers at the grocery store or a doctor’s appointment, held a sense of fear. As the fear grew, the more the isolation settled in. I feared that I wouldn’t be able to work again, or even go back to school. My intellect and my memory were intact, but my communication skills were almost destroyed. I sunk into a deep depression. I don’t know the exact day, or moment, but I turned the corner. As someone once said, the fire inside of me, burned brighter than the darkness surrounding me. Maybe it was that seed of hope, wanting to bloom? But I wanted to live. I didn’t know what that was going to look like, but I held fast and tight to the idea that I could rise. Once I made the decision to change my life, the Universe provided the people, places, and things that would facilitate this metamorphosis. I stopped drinking and was able to go off three medications (with a physician’s help). Also, I worked with two different therapists, attended self-help groups and a recovery organization, worked spiritually, and built a circle of very supportive women. I took advantage of every single opportunity that came my way. Today, my life looks very different. I am certified by the state of Michigan as a Peer Recovery Coach and am working within the same hospital where my devastating craniotomy took place, helping people struggling with substance use disorder. I am on the board of directors of a peer-run non-profit and am involved in advocacy work in SUD recovery spaces. I also speak publicly with a group that fights stigma around substance use disorder and mental health. I still struggle with aphasia every day of my life. Days when I am tired, or stressed, it becomes worse. I practice gratitude and self-compassion, and slowly, I am working on acceptance. The biggest takeaway from this is to not give up hope. Brains heal in different ways, and a “new normal” takes time to grasp. Love yourself and honor your limitations while striving for a good quality of life. And I did learn to say “toothbrush.”

    Community Voices

    Community Voices

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    Community Voices

    Y'all This Holiday season I'm struggling #Depression #Grief

    It's December 17th and I don't have it in me to decorate for Christmas. I have a small Charlie Brown tree that's in a red bucket out. I bought some colorful battery operated lights to go on it, but have yet to buy the batteries. To put the lights on is about all I can manage. Forget the ornaments this year...everything is all packed up in my closet. I just don't feel like dragging it all out. Yet, I miss the decorations because it has brought me joy in what is a pretty hard month for me.

    December is hard for me, because 26 years ago on December 4th I lost my mom very suddenly. She died in her sleep of an aneurysm. My world hasn't been the same since. I was only 18 when she passed. She wouldn't want me sad and #depressed Each year since I've had to work hard to make it a good month. I miss her so. Her birthday is December 30th.

    I know that Christmas doesn't have to perfect and that it's perfectly fine to be a total mess. I'm trying to be kind and patient with myself. I cry a lot. At least I have plans to be with good friends on Christmas day. I'm blessed.

    I had hoped to escape the #Depression that comes around this time of year, buy sadly it found me and here I sit.

    I know the holidays are hard for a lot of people.

    Merry Christmas and Happy Holidays to those of you struggling. I see you. Also wishing the same to all here at this site.

    8 people are talking about this
    Community Voices
    Community Voices