Yesterday, I learned that someone I love very much has Type 1 Diabetes. It was a sudden diagnosis that to most everyone seemed to come without warning. When the test results came back, he was told to go directly to the emergency room, where his blood sugar was tested and found to be 425. The crazy thing? He was at the doctor yesterday for his school check up, and the doctor had no intention and felt there was no indication to test for diabetes. However, his mom had noticed a drastic weight loss in a short period of time, an increased thirst, and more frequent urination. She knows her child. She knows what those are signs of. She felt that something was not right with her baby. So she pushed. And she was right.
Tears were shed yesterday as everyone absorbed this new information, as we tried to accept what changes must now be made in his young life, and as we mourned for what a few hours before had been reality. I remember the night that I was diagnosed with Crohn’s Disease–my first diagnosis. My mom held me, and we cried together as we realized my life was changed forever. As each new diagnosis has come over the years, we have coped in different ways. None has felt quite like the first, though.
When I look back on it, I remember a journey that began when I was in elementary school–too young to understand enough to fight for myself. My mom was my advocate. When I am too sick now–even as an adult–my mom still stands as my advocate. I have seen her yell at doctors. I have seen her cry in front of doctors. I have seen her make lists and do research to share with doctors. I have seen her educate doctors on medical conditions they never would have considered.
There are times when children with chronic illnesses need our parents to be our voices and our advocates because we are too young, because we are too sick, because we are too tired, because we are considered too ignorant to be taken seriously. There are times when we need our parents to be more than just a parent. At twenty years old, I should be able to drive myself wherever I want to go–but my driver’s license was revoked due to fainting and seizures. At twenty years old, I should be able to shower 100% by myself 100% of the time–but my arms often freeze up, and again with the fainting and seizures. At twenty years old, I should be able to sleep through the night all by myself–but the fear of adrenal failure when I am in adrenal crisis sometimes means someone sleeping close enough to keep an eye on me in case it comes to making the call to head to the hospital in the middle of the night. At twenty years old, I should have a relationship with my parents that is becoming far less dependent–but I need my parents to fill the role of caregiver in some capacity every single day.
I have good days too. I have days where I am able to muster up the strength to use my own voice when I am sitting on an exam table and need the doctor to hear my words and validate my pain or my fatigue or my numbness or my absence. On those days, my mom sits there with me, and she listens. She holds my hand or nods encouragingly. She fills in the blanks of my memory and my list of symptoms I made to talk about when the brain fog gets the better of me. She demands they listen if it seems they would rather push a pill than solve the puzzle. My mom is my ally on these days.
Yesterday, people that I love began their journey in these shoes, and it made me reflect on mine. It has been a long one–a hard one. But in lots of ways it has created a bond and a strength in my family that not a lot of other families have. My mother is my mom, my advocate, my caregiver, and my ally. More than that, she is my strength.
4 thoughts on “Mom, Advocate, Caregiver, Ally”
That is my girls! Mom has always been there for you and always will be. I love you both and my pride is through the roof for your relationship. You are blessed.
I am so sorry to hear about your friend and the journey he is just beginning. You and your Mom are so amazing. Having been diagnosed in my 50’s I didn’t have that kind of support and, unfortunately, was misdiagnosed for many years. Now that I am old, Abigail is my advocate, and she’s a great one. I have learned a great deal from your mother and her vast knowledge and willingness to share information with me. I just love your blog. It is heartbreaking and uplifting at the same time. My virtual hugs to both you and your Mom.
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My mom and I both adore you! Chronic illness brings many hardships, but it also brings the incredible gift of community. You and Abi are such a blessing in my life, and Abi is definitely teaching me what it means to be an advocate for myself and for others. You raised an incredible human. Much love ❤
Ditto GranJan. You are “for” each other, and this post will give strength and reassurance to the newbies to this journey. Thank you!