Being a rare disease parent is hard, but I’m up for the challenge
HAE can be overwhelming, even for a seasoned mom of 8
Being a parent is never easy. I should know, as I have eight children. I have four biological children from my first marriage, three stepchildren from my second marriage, and one adopted daughter. Two of my bio kids, my adopted daughter, and I all live with angioedema.
Being a divorced parent, a single parent, a parent of a blended family, and/or an adoptive parent all bring challenges. However, having a child with a rare disease is like parenting on steroids. Having experienced all of these roles, I’ve learned a lot.
My children all think I’m crazy, overprotective, and way too involved in their now-adult lives. I absolutely admit that it might be sort of nice to be an empty nester. However, given the multiple health challenges that our adopted daughter, Leah, faces, it’s unlikely that’ll happen anytime soon.
Even before we adopted her, we knew Leah had experienced malnutrition and developmental delays as a result of her stay in a Ukrainian orphanage from birth. What we didn’t know until after we met and fell in love with her was that her medical history was even more complicated.
Not yet 2 years old, Leah had already been hospitalized six times for upper respiratory issues. Additionally, we learned that she had double inguinal hernias, or those that develop on both sides of the groin.
After reviewing her records, which noted that she was allergic to wheat and dairy, we asked why she was being fed cream of wheat and curds and whey, only to be told those issues had resolved. It seemed no wonder that she was the size of a 6-month-old and not yet walking or talking.
Fortunately, none of these health issues was a big concern for us as seasoned parents. We had other children who’d experienced chronic upper respiratory issues, needed hernias repaired, and had food sensitivities — all of which are relatively easy to handle in the United States.
About two years after joining our home and undergoing a hernia repair surgery, a tonsillectomy, dietary changes, and therapy, Leah was indistinguishable from any other 4-year-old. She was unstoppable, and her seven older siblings had to try hard to keep up. She never met a playground or roller coaster she couldn’t conquer.
Everything was going great. After Leah finished preschool, I started homeschooling her, since I was also teaching her brother who had health issues. Years later, when she was diagnosed with rare and chronic health issues, including hereditary angioedema (HAE), this choice became a huge blessing.
Adding HAE to the mix
Being a mom is both beautiful and heartbreaking. Watching our children grow, develop, and blossom into the people they become is amazing. Witnessing their challenges and difficult choices can be saddening. However, seeing them struggle with pain is the worst! I want to help them and ease their discomfort, physical or emotional.
When Leah’s symptoms began, little did we know that her diagnoses would take years. Even after she was diagnosed with HAE, it felt overwhelming. How would we navigate the world of triggers and manage swells? When did we need to administer rescue medication? When would her flares require an emergency room visit?
It’s now been more than 10 years, and Leah is managing her HAE with medication. Some of her other rare conditions have treatments, but a few don’t.
Thankfully, Leah is now rather stable and can work part time somewhat regularly. She has her ups and downs, both physically and mentally, but we’ve found a flow in our family dynamic and support one another. Being a rare disease parent has been difficult, but I can’t imagine doing anything else, and I’m still up for the challenge.
Note: Angioedema News 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.