When One of Your Children Has a Chronic Illness
Our ten-year-old has chronic kidney disease. Because of this, he has to follow a special diet, take medication, and monitor his fluid intake. He also has numerous doctor's appointments throughout the year where he undergoes blood draws and ultrasounds. While these are anxiety-inducing days for him, to our other children, this looks like he gets lots of special mommy dates where he gets to skip school. Plus, he gets his own special food shelf where we keep low-sodium foods just for him.
As a parent of a chronically ill child, not only do you have to cope with your own emotions, but you also have to deal with the emotions and needs of both your ill child and your healthy children. Studies have shown that siblings of chronically ill children have an increased risk of developing anxiety, depression, and symptoms of PTSD that may follow them into adulthood. As if parents don't already fear screwing their children up, throw a chronically ill child in the mix and now the cards are really stacked against you.
Finding the balance between loving on the kiddo who is ill while also making sure the other kiddos' needs are being met is a lifelong challenge for families of chronically ill children. It's a difficult undertaking that requires an incredible amount of patience, both for yourself and for your children. Here are a few things that we have found to be helpful in our journey through parenting our family with a chronically ill child.
We are very open and honest as a family about our son's medical diagnosis. We discuss what it means for him and what it means for us as a family. We allow everyone to ask tough questions and if we don't know the answers we seek them out as a family. We try not to speculate about what the future brings because those are big topics that we'll be tackling in the future and are simply too much for little minds to process. We deal with and live in the now.
As adults, we can distinguish in our brains the difference between a fun skip day and a day that's missed for blood draws and ultrasounds and doctor's appointments. We know that it's not all fun and games, but little brains don't have the capacity to differentiate between the two. Validate their feelings. They may be feeling jealous because their sibling gets extra one-on-one time with their mom or dad. That is a valid feeling. They may feel mad that they don't get that time. That is also a valid feeling. They may also be feeling scared for their sibling and simply don't know how to express that emotion.
Don't diminish their feeling by amplifying what their sibling has to go through.
Don't diminish their feelings by amplifying what their sibling has to go through. This type of reaction will plant seeds of resentment. Resentment is a big, dark feeling that is difficult for children to process, and once they do they will often then feel guilty for feeling their feelings, which begins a vicious cycle. Don't give energy to that guilt by diminishing their feelings. Validate. Validate. Validate.
Yes, it is difficult for their sibling to undergo tests and appointments or chemo or surgery, but that does not diminish the emotions the healthy siblings are experiencing. All of the emotions they are experiencing are valid and need to be processed and they need their parent or a trusted adult to walk through those emotions with them.
plan special dates
When our son has appointments and misses school, we typically take him out for breakfast or lunch and then to the comic book store where he gets to pick out a comic or Pokemon card for himself and his siblings. He has expressed to us that his appointment days are his favorite days because he gets to spend time with us. We love this for him which is why we try to do the same for his siblings.
Be intentional about creating one-on-one special dates for each of your kids. It doesn't have to be an elaborate date - really, they just want your time and attention without having to compete for it. Go out to a baseball game or a movie, go grab an ice cream, go to Target to get your grocery shopping done and treat them to a hot chocolate from Starbucks. It doesn't really matter what you do as long as you can give them your undivided attention.
don't let the illness overshadow the wins
It's so difficult. For those who haven't lived it, it's difficult to explain. How do you allow yourself to be present for one child's wins while your other child is in the hospital struggling? There's no one way or right way, most of the time we're simply just doing the best that we can - and that's okay. But don't let the illness overshadow the victories. Step out of the hospital room and go to the dance recital or the baseball game or the track meet. Take a video or photos to take back to your ill child to share in those experiences.
Don't let the illness define your family
The illness is a nuisance - it is not the identity of the family. Don't let your choices be dictated by the illness, rather accommodate the illness as needed. Friday night is pizza night for our family. Sometimes it's pizza and movie night, sometimes it's pizza and game night, and sometimes it's pizza and free-for-all night, but it's always pizza night. Now, pizza is not exactly a low-sodium meal and it's absolutely one of our ten-year-olds favorite food. (Because, pizza.) So, we needed to pivot. We found alternative options so he could make his own low-sodium pizza. Pivot, Momma, there's an alternative to what you had originally planned that has the potential to be even better.
Find A Support Group
Find a local support group that your family can be a part of. Oftentimes these support groups have groups specifically for the siblings of kiddos with chronic illnesses. It's helpful for siblings of chronically ill children to connect with other siblings of chronically ill children. They can relate to each other in ways that they can't with other kids their age. (Not to mention the many benefits support groups have for parents of chronically ill children.)
Ask your child's doctor or specialist if they have any information about local support groups. If they don't, try the clinic or hospital social worker. If there isn't one in your area, maybe it's time to start one!
support the cause
Almost every ailment has a cause behind it. Get the entire family behind supporting the cause. Get involved in your local organization. Have the family participate in awareness walks and runs. Kids are like sponges and will soak up all the information available at these events, becoming experts in no time. Sometimes the siblings become the biggest advocates for awareness! No cause in your area? Start one.
Parenting when one of your children has a diagnosis that requires extra attention is tough. There will be really incredible days that you'll want to relive over and over again, and there will be really difficult days that you'll relive over and over again when all you want to do is forget about them.
While there are many factors considered when it comes to the long-term effects of childhood chronic illnesses, take solace in this, Momma: siblings of chronically ill children grow up to be more compassionate and empathetic adults than their counterparts. That is a win.
Are you parenting a child with a chronic illness? What types of things would you add to this post?