Children with chronic illnesses require a lot of attention from moms and dads. That is a fact of life I’ve become very accustomed to as I’ve raised Alayna, my youngest of three, a 20-month-old with various medical conditions, including a rare form of juvenile diabetes. But what I didn’t expect to learn through this journey is the impact on the siblings of a child with a chronic illness.
As an infant, Alayna’s particular medical needs required us to take extreme measures to protect her from germs. Alayna could not be in common public places such as the mall or kids’ play places. We limited visitors and screened people for viruses before coming to our home. My older children were 3 and 5 at the time, and we just could not risk having their playmates over, as they may be carrying a virus that could be harmful to Alayna. This was difficult for my children to understand. I was always feeling torn about how to handle this. I did not want to split our family in different directions, but I also did not want to dismiss the importance of my older children’s need for socialization and community inclusion.
Despite our efforts, at times Alayna would end up sick or in the hospital for monitoring and testing, which would require at least one parent to be away from home for a few days. Depending on the floor of the hospital she was on and the particular season, children may not be permitted to visit. This presented a difficult decision about what to do with our older children, which parent goes, which parent stays. More guilt. Guilt over the thoughts of bouncing them around, guilt of the thought of missing out on a day of their lives.
My 3 year old was a bit young to be affected by all of this, and had a pretty passive personality. My 5 year old did not. She was fully aware. After a hospitalization, I would come home to having her claim she could not breathe. If she had a tiny cut, she would itch it repetitively to make it more visible, to elicit more of a response from us. One time she actually pretended to be drowning in our pool; clear-cut cries for attention. More mommy guilt.
Here are some ways we managed Alayna’s health while trying to keep her siblings needs in balance as well.
1) We recognized that with Alayna’s medical needs being so intense, they did need to surpass others’ needs at times, and that was okay. Although we felt bad, it was nobody’s fault, and some things just needed to be prioritized. This might have been something acute such as Alayna’s urgent need for a snack taking precedence over my 3-year-old’s want for a snack at a given moment. My children may not have understood exactly what “low blood sugar” meant, but they did pick up on the urgency. They came to understand that it meant that Alayna NEEDED to eat, and they began to appreciate that. It also might mean something more long term, including the need for me to travel to see a specialist and be gone for up to a week. This truly ate at my heart, as sometimes it meant missing a school event. But I had to keep focus that in order for us to be a family and to be together again, I needed to get Alayna well, and that is what I had set out to do. I could not feel guilty about that.
2) While in the hospital, it became my job to be there and my husband’s job to be home with the older children. He would of course visit or bring the kids to see me at night if possible, but for the most part, he was home getting them back and forth to school, and activities, and doing homework and all other hustle and bustle that came along with a busy household. This is not to say this is the right way to handle the situation, but it was the right way for us. It made me feel better that my other children were not being shuffled around amongst family and friends. It made me feel better that their routine was not disrupted. If they had a school event, at least they had one parent there. It made me feel better that they had a parent with them in case they got sick or hurt. And what feels good to you is what is good for you and your family. I was once called out by a hospital staff about my husband’s whereabouts and his lack of involvement. She was not there at night to see him visit and she did not bother to ask about our home life. She judged without knowing. I had to learn to look past these hurts and keep focused on what was important. Thankfully, technology made being away from home easier, as I was able to FaceTime with the kids when I could not be home.
3) We always tried to be mindful of our older children’s presence. Even if they are in the other room, children are always listening. So if we needed to vent to each other, or speak about a test result or doctor’s visit, we did so behind closed doors whenever possible to decrease their anxiety. Even if they could not understand exactly what we were saying, they could pick up on tone and emotions that go along with it and are pretty good at putting pieces together. They know when something is “not good.” We did not want to put any added stress on them that could be avoided.
4) We used simple language to help the children understand what was going on with Alayna. Instead of keeping them completely in the dark for their wild imagination to take over, we offered a simple explanation for their worried little minds. For example, when Alayna needed oxygen early in life, we explained that she couldn’t breathe as well as they could, and needed this special machine to give her extra fresh air. They trusted us, so if we were able to give a simple explanation, they were happy with that.
5) Birthday invites and my older children’s interest in going out were a challenge. We decided that events that were deemed to be important, such as birthday parties, could not be missed. One parent took the older children, and one parent stayed home with Alayna. That was the simplest way of handling that. When our kids asked to go somewhere and both parents were not available, it was not as clear cut how to handle it. In the beginning, I constantly found myself saying “we cannot do that, it’s not safe for Alayna,” or some variation of that statement. It one day hit me that the kids could begin to resent Alayna. So we tried to divert their eagerness to go out to a different at-home activity, with no mention of Alayna’s needs. If they wanted to go to a play place, I would say, “Hey! I was thinking of setting up a really fun obstacle course in the playroom with tunnels and hula hoops, would you guys like to help set it up?” When it comes down to it, kids just want to have fun, and they were happy to have my attention, and to be doing something we do not do everyday. That’s not to say we never went out, but when it just was not possible or posed too much risk, such as during peak flu season, they were easily diverted in this way.
6) Taking the older children out individually for a mommy and me/daddy and me date night proved to be a very effective strategy. It did not have to be expensive or extensive. My daughter was happy with getting dressed up and going out for tea and a cupcake with me. My son was happy to ride in daddy’s truck and go to Home Depot with him. Even if it was at home and I did a special art activity with them. So long as the attention was on them and it was an interactive activity they enjoyed, they were pleased and it definitely went a long way.
7) When my 5-year-old was exaggerating an injury for attention, we addressed the minor cut, or whatever she presented with, as the situation warranted, with maybe an extra hug, and sent her on her way. Probably sounds like “tough love,” but we did not want to feed too much into this negative behavior, as she could really hurt herself. When she did things like this, it would alert us that she needed more attention, and we would plan an individual outing as discussed above.
We love all of our children equally, but unfortunately their needs are not always equal. Most days we handle things just as all other busy families with multiple children do. But when Alayna’s medical needs became urgent, we prioritized it as was necessary and made it up to other children in other ways, or on other days. We had our plan for how to handle outings and hospitalizations, and we stuck to it as best as we could.
Being consistent on how we handled certain things proved to be key. When Alayna needed to be in the hospital, they knew they would be home with daddy, and I think they were comforted in knowing this. I will always carry some of the guilt that would come to any mom in this situation. I allowed myself to have breakdowns in private when the children were not around. But once my pity party was over, I re-focused that energy to spending meaningful time with the children. I also tried to look for the positives in the situation–I know that my older children will develop the strength of being compassionate, and I am happy for that.
Michele Ogniewski is a mother of 3 who lives and writes In Saratoga Springs. She is a part-time social worker and full-time advocate for her daughter’s medical needs.
