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Mother’s Day can be bittersweet when you have children with a rare disease such as Alagille syndrome (ALGS). Being a mom to kids like this is special, and it brings a whole new meaning to motherhood. There are lots of things that go into the process of being a mom to a child with ALGS. Although people may try to understand and express empathy and compassion for you, I don’t think they can truly get it unless they live it.

I love being a mom and I love my kids more than life itself. I would do anything for my kids so that they are healthy and happy in their lives. I never thought when I became a mom that I would experience life with children who had serious medical complications.

I guess I didn’t think I would be able to handle that type of life. However, the second you are thrown into the challenges of raising children with a rare disease, you learn how to swim in the deep end and survive. It’s about doing everything they need to keep them healthy and alive. 

There are many times I would have rather not seen another day than have my children go through the things that they have. It is heartbreaking to stand over one of your children and help hold them down for a procedure while he screams, “No, mommy, no!” I envy the moms that never have to understand what that feels like. Or the moms that never worry over a fever or obsess over lab results. It seems unfair at times that my motherhood feels robbed of joy with of all these medical concerns, procedures, and worries, but I know that those factors make me an even stronger mom and they deepen my connection with my children. 

Read about HCP resources for ALGS

Even though there are so many challenges to being a mom to children with ALGS, there are also so many sweet moments. We get most of the same moments other families get, but we also get a little extra time to make memories. Those times we travel to doctor’s appointments or have admissions in the hospital that we turn into fun times and create new routines are special experiences. We live celebrating every small milestone and making core memories to be sure all the positives outweigh any of the negatives. We bask in the joy when it comes because we never know when the next worry will show up. 

My experience of motherhood may not be exactly how I imagined it, but at the end of the day, I wouldn’t change it. My ALGS kids got a mom who will fight hard for them and who will do hours of research, ask all the questions, and who will advocate and take care of them. This journey of motherhood isn’t only about mothering my kids, but also about making me a better and stronger person as I watch and learn from my children. I am honored to be their mom through it all.