We know parents need some time away from their kids and sometimes that time away becomes mandatory as defined by a job. When you have a child with medical concerns like Alagille syndrome (ALGS) it can be hard to take time away to recharge and not feel an overwhelming amount of guilt. It’s difficult to find people to trust with your child’s medical history while you are away.
I learned very early on in our journey with ALGS that I needed to take time for myself to be able to process the anxiety and stress so I could be the best mom and care provider possible. Not only did I need my own time mainly at the gym, but my husband and I needed time alone to reconnect. We were in a good habit of date nights once or twice a month before my son was diagnosed and we knew we needed to work hard to get back to that space post-diagnosis.
Read about HCP resources for ALGS
Around a year into our journey, I finally hired a babysitter we trusted. I took references from friends and family and conducted interviews. Of course, I explained his medical condition and the fact that he would require medication to make sure they were OK with giving it and we found a good fit.
Right before his liver transplant, I felt like finding a caretaker was more difficult. My son just looked rough with xanthomas all over his body and his yellow skin. I felt it could be scary, but we found great caretakers. I always go over his condition with them in advance during the interview and get their certifications and make sure they’re comfortable caring for him.
I also educated my other 2 kids who have ALGS that my daughter fell off a fence and fractured her skull coupled with a brain bleed so that they can understand the seriousness of the disease. I want them to be aware that the kids need to be as careful as possible and can’t be outside doing daredevil stunts.
I always prepare medications in advance to ensure the correct dosage and leave the medication with a list of times that it is to be given. Now 2 years following my son’s liver transplant it is much easier since there is only 1 medication we need to give. I always check in with the caretaker after medication time is over to ensure they provided the medication, so I have peace of mind. Before the transplant, there were several medications, so I’d make sure to administer those during a time I was home to ensure my son received them but also not to add any additional responsibility to the caretaker.
Leaving overnight is also a big production. As I do with a babysitter, I prepare all the medication in advance, but this becomes a little trickier based on the number of days we will be gone. I separate the prepared medication into bags for day and night and then label the bags for which day they are for.
It can be difficult to find someone you trust to step into your place and care for your child—especially when many important routines and medications need to be a priority. Luckily for us, my son’s medications are now limited and before the transplant, we had a good routine to ensure his needs were met. I believe that it’s so important to have a little bit of time away from the kids and to focus on myself or our relationship so that we can come back and continue to parent in the way that we want.