A big family is something some people dream of. For me, I always wanted 4 kids. Never did I think that I would have kids affected by Alagille syndrome (ALGS), as I am sure most people do not. Having 4 kids can become quite a challenge when you are trying to balance life and deal with a kid who requires a lot of medical attention. It is imperative to make sure that everyone feels special, and everyone feels cared for. I never want any of my kids to feel like they were left out or not feel special because they did not require the time or attention that their brother needed. Sometimes it feels like a very delicate juggling act.
My son has a lot of medical appointments and sees many specialists. Now that we have a handle on his ALGS and have several baselines and follow-up appointments, we are able to space appointments out and they have become much less frequent than compared to the beginning.
However, it is very hard to balance everyone when you cannot be in 2 places at a time. When we travel for medical appointments for my son, we are constantly having to make arrangements for the other kids to be cared for (especially in the current COVID environment). Pre-COVID, I would sometimes bring them with me if I knew it was not going to be a super important or long appointment. Before I leave for the day, I need to make sure the kids are set up, lunches packed, school items ready, and plans made to get them to and from school.
The ones that are not in school also need full-time care during the time that we are gone. It can be a lot to try to schedule especially if someone has activity or must stay late at school for a special group, but we manage and try to keep the routine as close to normal as possible.
After my son had his liver transplant, we spent 21 days in the hospital. It seemed like forever. My husband and I took turns every other night staying at the hospital and the other one staying home with the other kids. In the morning, we would get up and get the oldest kids to school and then drop the baby off with my mother-in-law. We would make the hour-long drive to the hospital to tag the other parent out so they could head home to hold down the fort. While we were able to manage this schedule, it became very overwhelming.
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There was no family time being spent and very little quality time. When we got home from the hospital, we were exhausted and just trying to stay afloat. We were constantly doing chores to try to keep the house together and running as normal. The routine was completely off, and I felt so distant from my other kids. Thankfully, during this time they were able to visit at the hospital so we would spend a weekend day visiting so that we could try to squeeze in some family time.
Also, my mother-in-law was a huge help. She stayed overnight at the hospital a few nights with my son so that my husband and I both could go home, be with the other kids, and get some much-needed rest. This was one of the biggest blessings we had during this crazy time.
Unexpected hospital stays can become stressful and cause a lot of anxiety. Typically, I will go to the hospital with my son and my husband stays home with the other kids. Since he is usually not home full-time with them, their routine can become chaotic, and things get crazy at home especially if the other kids are sick. I hate being away and not being able to run the day as normal.
I am thankful that we have family that lives close who is always willing to jump in and help if we are put into these sticky situations. They will typically pick up any dropped pieces or even drive things to the hospital for me that I need for the admission. Trying to manage several medical appointments, hospital stays and more with siblings at home can be a lot. Without the support from family and friends, handling these types of things alone would be even more chaotic!