This past weekend was Mother’s Day and as a tribute to my mom I wanted to talk about the caregiver’s perspective of life with IBD. Not only did the diagnosis of ulcerative colitis change my life, it changed my family’s life. Not many people talk about how a chronic illness diagnosis affects those around them because we often feel alone, but in my case my family has been my entire support system. They were forced to take care of me in unimaginable ways and for that I am forever grateful. I asked my mom to write a little bit about what it’s like being a caregiver to me – a patient with IBD.
“When symptoms started to show I quickly realized Christie was a carbon copy of my brother (her uncle) and I remember watching him through colitis. Not only did Christie’s life change but mine was altered as well knowing what was ahead of her. I didn’t want to share EVERYTHING my brother went through so as to not worry her. But I knew what was ahead and prayed the doctor’s diagnosis wouldn’t be the same, but it was.”
“I would wake up in the middle of the night when I would hear her flushing the toilet thinking “please not my baby, she doesn’t deserve that!” I quickly noticed her sadness from not knowing what she had and finally with her diagnosis. She would cry feeling she wouldn’t be able to finish college. My heart kicked into full gear and I told her “you will NOT let this alter your life or any plans you have!”
“I drove her door to door to her Wintermester class so she could finish the course in the midst of finding a way to slow down the progression of her symptoms. I would have done anything to help her realize that she will live a normal life. Through that strength I realized myself that she can live normally through the ups and downs of this disease physically and emotionally.”
“As it turns out, she has more strength than she believes when dealing with her everyday worries with colitis. Humira was never an option for my brother and the medical field is so different today than in the 1980s. It has come such a long way and I am grateful that it works for her…and so is her uncle. As with all my children, I worry as a mother but she continues to show her strength and willingness to learn all she can about this disease and help others come out of hiding so they can face it and not be alone. She’s my superhero!”
Seriously, how did I get so lucky?! Little does she know, she’s my superhero too. She has made so many sacrifices to make sure I get the best care in the world. Having her as my caregiver has given me strength to keep going and understand that I CAN live a normal life. Not only did my mom make these sacrifices, but my entire family as well. Thank you Momma Bear for always being there for me. I am forever in debt to you. I love you bunches and Happy Mother’s Day!
2 thoughts on “A Mother’s Day Tribute: The Caregiver’s Perspective”
Beautiful! I do feel so much stronger now that I don’t feel alone or ashamed. I’ve really been learning so much from both of you. My husband and kids spoiled me as usual on Mother’s Day! I feel so lucky too. Thank you.
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Happy Mother’s Day to you Alicia! I’m sure that your strength inspires your kids everyday.