The changed lives of MPS siblings

Posted Wednesday June 08, 2011 by Melissa

We have 2 other children – both boys – one is 17 months older than Case (so currently 5 1/2) and the other is almost 3 years older (so currently 7 years old). One thing I’ve found is that with an MPS diagnosis, not only am I forever changed, my other children are forever changed as well. There are the good parts and the bad parts and I hope and feel that in the end, the good outweighs the bad.

I was musing the other day and just had to get my thoughts on paper (or keyboard, as it may), so just bear with me and read or just click close.

There are wonderful effects that having a child with MPS has on his or her siblings. They become more understanding of those with different abilities, they generally become more patient and more empathetic and less judgmental. They learn to help, to love unconditionally, to forgive, and to cherish. They learn of God’s unmistakeable plan, even though their sibling was made different from them. They get to experience the overwhelming generosity and kindness of friends and strangers alike. They meet wonderful families and children they never would have met otherwise and sometimes get to travel to places they never would have either.

But then, there are also the hard parts. The parts these kids never signed up for.

Missing things: With all the doctor, therapy, and infusion appointments, hospital stays, and clinical trial visits, we parents miss parts of our children’s lives that we never intended to miss. It’s not like we’re working late and miss their baseball games, we don’t really have a choice between them. And somehow, we hope that these kids can understand, and not feel anger or bitterness toward the sibling that causes our absence.

For example, I’ve had to get okay with the fact that because of the clinical trial, I’ve missed or will miss spending the time with my family on my wedding anniversary, parent-teacher conferences, part of Easter, my son’s birthday, his kindergarten graduation, their last day of school, Memorial Day, their last T-ball game, trophy award and party, my birthday, Father’s Day… and that’s just the first 6 months of the year. Now, I’m not complaining – I wouldn’t have chosen it another way, but I know my other two kids are not really old enough to understand these things. I see in their eyes the sadness that I’m missing something else … again …

Loss of attention and energy: After we are done running around to all of the above, when we finally do get to be with our other children, we are often running on empty – physically and emotionally. Our time left is often spent on laundry, grocery shopping, packing lunches, and running needed errands. Also, emotionally, it is hard to buy into their excitement, their energy, their desire to do things with us, when really, we’d like to lie on the couch, close our eyes, and cry. But sometimes, it is just being with them that brings us back to the zest for life that had waned while we were absent from them and running like crazy.

Changed perspectives: Our typical kids often have changed perspectives of the world, their sibling, and their family as a result of the diagnosis. They see how people treat their sibling and have to make decisions on how to respond, the questions to ask, and how to feel. They ask questions about why their sibling goes to a different school, goes to the doctor so much, gets different toys, eats a different dinner, gets to use different entrances to buildings and amusement park rides.

Here are two examples in our family of these changed perspectives. Those of you who know our children personally can appreciate their uniqueness and different approaches to the new challenges that MPS has brought to our family.


Our family

After church, my kids always hand me all the work they did in their children’s class. One of my older boys handed me a picture one day that included all of our family. The rest of it was a little more difficult to decipher, however, in text and in meaning. The jist is that he drew himself and his other unaffected brother as in the family room with Chris and me, and drew Case as being in the basement by himself or with his CNA. Now, our “basement” is a normal room of our house that is a gated playroom with a bathroom and an office next door that walks out to the garage, so it is not as bad as it sounds. But, it is in that room that Case has the most freedom and spends more of his time than in other rooms. It is gated, it has his toys, it allows him freedom and gives me comfort that I can run upstairs to get a coffee without him hurting himself, comfort I don’t have when he is in any other room in the house. In almost any other room, I cannot leave him alone for more than a minute. [Sidenote -> I originally wrote most of this post a few weeks ago. Since then, I can now allow Case more freedom because of his advances due to the IT trial.]

At times in the evenings or on the weekends, one parent will be in the basement with Case and the other upstairs with the other boys. This is because having all 5 of us in the playroom is stifling for more than a little while and having Case outside the playroom is usually a full time job for the parent who is “on the job” at that moment of keeping him safe. But it made me incredibly sad that my son viewed our family as having to be separated so much. I hope and pray that as time passes, there will be a bigger percentage of time that we can spend as a full family.

Handicapped parking sign Another example of the effect on kids… More recently, we got to visit Disney World and those of you who have may know that you can get a disability pass that allows you to bring your child’s chair in the lines, use handicapped entrances and special seating on rides, and often, get on rides without more than a minimal wait. This was incredibly helpful for Case for several reasons. (1) He has a very short attention span so waiting in line (even in his chair) can often induce a huge, screaming and flailing fit. (2) Because Case has little sense of danger, grabs people randomly, and cannot walk for more than short periods of time (although some of this is tiredness, some is a lack of attention to task – he wants to wander everywhere, touch everything, run away, etc.), he has to ride in his stroller (“wheelchair”, “special needs stroller”, “medical stroller” – the choice of terminology for purposes of airlines, schools, amusement parks and beyond can fill its own post!) to make it to and fro most places in any respectable period of time and level of safety. (3) On many rides, for Case to stay safe and all of us (him included) to enjoy the ride, it is better for him to ride while strapped into his stroller. The harness is crash certified and he also rode in it on the Disney buses. But, I digress.

So considering the above, we used Case’s Ormesa Bug stroller to enjoy Disney World and it was incredibly helpful. So after awhile, my kids realized that we were passing long lines of people and that sometimes, Case was riding the ride in his chair. Now, we’ve had conversations previously with them about why Case rides in his chair sometimes, why we use handicapped parking when he’s with us, why they don’t get to just push the handicapped door buttons aimlessly at will, etc. They know what a blue handicapped symbol means as well. At one point, as we walked up the exit for the safari at Animal Kingdom, one of my kids shouts (loud enough for many, including those in the line, to hear unfortunately), “Yeah! Handicapped!”

I gasped for a second, then quickly took him aside to explain that we don’t cheer about things like that and why it is helpful for Case to be able to board rides this way and why that could be a hurtful thing to say… and besides that, I sternly noted to him, “YOU, my son, aren’t handicapped.”

But, MPS has forever changed his perception of what it does mean to be handicapped. He got to see one good part that day, where society has thankfully acknowledged the impediments that those with disabilities used to have, and in many ways still have, to enjoying things like amusement parks and has made it just a little bit easier. Now, considering the above, he does have to suffer many of the family difficulties of his brother having a rare disease, but he doesn’t suffer them himself. But I have to say, in the end, did our ability to ride all these rides together and with Case being the most “himself” and the safest he could be allow us to have to most “normal” family experience we could have at Disney? It certainly did.

One Response to “The changed lives of MPS siblings”

  1. Awww… this was such a convicting post! I know that it must be hard for them now at the age they are at, but they’ll grow into it. One of my best friends from college has a younger brother who is deaf and mentally retarded. He said that when they found out it terrified him (and bear in mind he was a teenager at the time-there is a big gap between them). He didn’t know how he would deal with it. I got to see him with his little brother (who is now 8) at graduation last month. I have never seen my friend so loving and affectionate in my life. It was so touching I cried. I know it was hard on him in the beginning, and I know he still struggles with people flippantly throwing around the word “retard” and even people teasing his brother, but he does manage. And it was a great testimony.