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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

He’s my brother, he might lick you…

As I close the end of one full year of this journey of writing about our “Lesson’s from the Book of Matthew” I would like to take some time to talk about the important role of siblings to one who has special needs. This week I plan to share my viewpoint and insights…next week I would like to continue and give you the perspective from Matthew’s older sisters and I will have Theresa speak for Sarah Anne.

When we began this journey with Matthew nearly ten years ago we had no idea what we were in for…neither did Hannah or Megan. They were excited about having a baby brother and the anticipation of his birth grew up until the due date and birth. That was when the whirlwind for us and them began. As we processed the complications and building prognosis of Matthew, Hannah and Megan just wanted to see their brother. For the first week they could only look through the glass door of the Neo Natal Intensive Care Unit at the hospital as they were not allowed in the room…about twenty feet from his bed. Matthew was transferred to a different hospital after the first week when they finally saw him…a mess of wires, tubes and machines, but still their brother. As Matthew spent a couple days shy of his first month in the hospital we tried to keep things somewhat normal for the girls. I remember one of them, when asked how Matthew was doing by a well-wisher, responded “Matthew is doing pretty good, but Mommy cries a lot…”

We knew early on that our family dynamic had changed and that we would not follow the “norm” of most families. Hannah and Megan’s role playing with their dolls consisted of tube feedings, bandages and other hospital rituals. We began to wonder out loud to each other how this all would effect Hannah and Megan. We tried to make things somewhat normal for them but when one has to carry a heart monitor and it alarms while at church, you don’t just blend in. There were constant doctors visits and after a while we could have had Hannah and Megan fill out the papers every time we visited a new specialist…they became experts on their brother’s medical rap sheet.

As much as we worried in the beginning…we started to be comforted later as we saw the positive changes that took place as well. At three months old Matthew was sent to Cleveland, Ohio to recieve treatment to strengthen his weak swallow. During that month Theresa and the girls stayed at the Ronald McDonald house while I came back-and-forth on the weekends. What we witnessed was Hannah and Megan playing with the other kids there…kids with obvious medical conditions. Conditions, anomolies, differences and disabilities that we saw…but they didn’t. Maybe this wouldn’t be so bad after all…

Here is an excerpt from the University of Michigan’s website on Siblings of Kids with Special Needs (contact me if you would like the link) We will jump in and claim ourselves experts as well…ten years has to account for something, right? I have added a few as well…

Common Difficult Feelings a sibling might Have: Worried about their sibling…jealous of the attention their brother/sister receives…scared they will lose their sibling…angry that no one pays attention to them…resentful of having to explain…support and/or take care of their brother/sister…resentful because they are unable to things or go places because of their sibling…embarrassed about their sibling’s differences…pressure to be or do what their sibling cannot…guilty or negative feeling they have toward their sibling or guilty for not having the same problems…lack of privacy

What’s the upside of growing up with a sibling with special needs: Patience…kindness and supportiveness…acceptance of differences…compassion and helpfulness…empathy for others and insight into coping with challenges…dependability and loyalty that may come from standing up for their brother or sister…lots of traveling opportunity…special privileges at theme parks…preferred parking

I will continue this discussion next week with the responses to what Hannah, Megan and Sarah Anne (through Theresa) about this topic.

“Parents can only give good advice or put them on the right paths, but the final forming of a person’s character lies in their own hands.”  Anne Frank

I will close with this…I am proud of who my older daughters are and the beautiful young women they are becoming. I am also encouraged to see, even at 20 months old how Sarah Anne just wants to be like her brother, especially eat like him even though she lacks a tube feeding button. And, much to the dislike of Matthew…just wants to be around him. I am sure that her first recognizable ASL signs were “Baby Go”.

Many have asked if it is okay to share this blog about our Lessons from Matthew…not only is okay, but we emphatically ask that you would. We welcome any chance to show how good God is and how he is working through the power of prayer.