A tribute to my mom, who wears many hats while managing my care
I’ve gained a renewed appreciation for everything she does
Every morning, after relieving the night nurse, my mom walks toward my bed. “Snookums!” she lovingly calls out when she sees that my eyes are open. It’s a nickname that comes straight from her heart.
Everything my mom does for me, which is a lot, comes from that same place. She is my No. 1 champion on my journey with SMA, and I think it’s time to celebrate that fact.
A few months ago, my day nurse hurt his back, so my mom has had to care for me two days a week for 13 hours each day. While she attends to my physical needs, she is also busy on the phone and online, ensuring I have access to necessary resources.
Calling multiple nursing agencies each day to check for available nurses is just one part of her responsibilities. My mom also contacts repair companies to fix my medical equipment and other electrical appliances in my room. Additionally, she communicates with doctors’ offices and ensures my paperwork for Medicaid and Medicare is in order.
I don’t have enough space to list every person she contacts to make sure I have what I need. She’s been doing all of this for my entire life. Apart from myself, she is undoubtedly my biggest advocate.
I’ve always known how hard she works for me, but since I started spending more time with her during the week, I’ve gained a renewed appreciation for everything she does. I now understand how frequently she is on the phone with vendors and doctors’ offices to ensure I have the necessary medical supplies to thrive.
Even though she worked full time at a hospital, I always came first in her life. Now that she’s retired, she’ll tell you that advocating for me has turned into her new full-time job because of everything going on in my life.
Advocate, manager, teacher, and caregiver
Shortly after she retired almost two years ago, workers began renovating the garage of our new house. As we transformed it into my new bedroom, bathroom, kitchen, and medical supply room, we encountered significant complications.
My mom had to take on a managerial role to oversee the renovation and ensure the general contractors could navigate these challenges. This was a new role for her, and it was overwhelming at times, but she persevered to make sure my new living space met all my needs.
Now that we have moved into the new house, there are still some aspects to work out in my living space. However, my mom consistently stays on top of everything, making sure others do the same.
A few weeks ago, when the floors in my room started cracking and popping up, she had them quickly replaced. While that was happening, she coordinated my temporary move upstairs for a week with all my medical supplies and equipment. As I explained in a previous column, this was no small feat.
My mom also has a remarkable talent for training new nurses about my case. Before I was born, she was a high school teacher. Whenever she trains a nurse on how to provide my care, her love of teaching shines through.
My care isn’t particularly difficult to learn, but some parts can be challenging. However, those tasks become easier under my mom’s instruction. For example, when suctioning or clearing mucus, new nurses sometimes insert the catheter at the wrong angle down my nose. When my mom shows them the correct technique, they usually have no problem suctioning my nose again.
Finding nurses to add to my team has been a year filled with challenges. My mom has been constantly checking with multiple nursing agencies over the past few months to see if they have nurses available for us to meet. Whenever a nurse comes for an interview, I typically lead the questioning, and my mom is always there to support me.
My mom always has my back, and no award could truly reflect her worth. Like my faith in God, she helps me soar toward my dreams. I hope to help her soar toward her dreams as well!
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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