Chronic Illness and Sibling Challenges
As a parent of two boys with Shwachman-Diamond Syndrome (SDS) and secondary Mitochondrial Disease (Mito), I often wonder what life would be like without the double diagnosis. I know that we would define "normal" a bit differently than we do now. I know there would still be many challenges. Any parent knows there are plenty of challenges just raising healthy kids! Most parents have to deal with issues between siblings on a daily basis, removing chronic illness would not remove sibling rivalry.
On our way back from Shwachman-Diamond Syndrome week at Camp Sunshine, I was pondering how my children might be different had we never had the effects of SDS and Mito in our lives. I wondered if other families were more "normal" because they did not have SDS or mito in their lives. The answer to the first question is yes, our lives would be different. The answer to the second question is, in my opinion, no. Other families are not more normal, they just face other problems and challenges. I realized that our family would not me worry-free, problem-free or carefee if we were able to remove SDS and Mito from our lives. Raising kids is challenging in and of itself!
Sibling issues pop up for a variety of reasons, not only because one child has medical issues. Sure, the sibling problems may be intensified due to medical challenges, but I believe they would still be there. We have plenty of non-medical related sibling issues in our household. One child excels in mathematics and it drives his older brother insane! We have the typical, "I don't want my brother to tag along with me" issues and we have the daily sibling arguments over food, remote controls, video games and seating arrangements. We have had to deal with learning problems and issues with school work, too. When my oldest was younger, he did have a brief period of time where he thought hospital trips with his two younger brothers were fun and special times for his brothers. He accompanied us to the hospital for IVIG, bone marrow biopsies and other procedures a few times and realized his brothers were NOT having fun. For the most part, I would say that the sibling issues we face day to day are the same as just about any other family.
I think it is important for siblings not to be completely isolated from the medical events unfolding around them. This helps them to understand that the sick child is not receiving preferential treatment. Seeing what happens first hand tends to make a big impression. It is also important to let the other children know that if they were ever sick or needed hospitalization, that you would be doing the same things. It can be scary for the children going through the medical treatments and for siblings and parents. It's okay to exprerss these emotions openly and honestly. They need to be addressed and can only be addressed if we acknowledge they actually exist.
Along the way, we have always been open and honest about what was going on in the medical realm of the boys' lives.Sometimes, I wonder if, perhaps, we have been too honest. I also wonder if our daily medical drama will scar them for life! Parents know their children best and only they are able to decide how much detail to share with their children. I'm sure many of you reading this know the medical drama of which I speak. No matter what medical procedure you have to do at home, shots, urinary catheterization, infusions, swallowing pills and medications, etc, there are bound to be times where the stress of it all leads to what we call "medical drama". I have been known to say, "There is no greater drama than pill drama" <insert cath drama or shot drama or whatever medical drama you are experincing at the moment>
Surprisingly enough, we have watched our oldest turn into a wonderful young man. He is full of comppassion, though not always for his own brothers, and has become a wonderful volunteer in our community. Looking back over the last fourteen years, we can see there are blessings to be had in having chronically ill children. The blessings are not always apparent during the crisis or in the day to day craziness, but the blessings are there. Slowly building, constantly changing until one day you realize the fruits of your insanity. When my boys were much younger, I wondered if they would ever turn into normal human beings coming from our insane world of "medical drama". So far, I can report that things are looking good.
**as I retype this article 5 years later, I can tell you that things are still looking good. My oldest is finishing his second year of college and my youngest two will hopefull be graduating in the next year and heading off to college.