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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

The Heart of Sibling of a Special Needs Child

Before I get into this week’s blog I would like to ask for a special time of prayer over the next few weeks. Isaac is scheduled for a major surgery on Monday, April 11 at Cincinnati’s Children’s Hospital. You can read about the specifics if you go to blog post prior to this one. The surgery is a long and detailed one and he will be in the hospital for about 2 weeks. Please pray for a successful surgery, for healing and for all the details of a family of seven being separated for this time period. To keep informed of Isaac’s progress you may subscribe to this blog in the column to the right. You may share this prayer request by clicking on an appropriate link at the end of this post. Thank you for being a part of our journey.

The Heart of Sibling of a Special Needs Child

As a parent of a special needs or medically complex child do you ever wonder about how their siblings are doing or cope with it? When we were thrust into this arrangement nearly 15 years ago without warning we were quite concerned as Matthew spent his first month of life in the hospital. And, now that Isaac is nearly 4 years old we have been taken to yet another level of focus and care, we have relaxed. Things do work out. Not perfectly, but they do work out…for the better.

A typical outing...

A typical outing…

Yes, it can be hard. Plans get derailed constantly due to another crisis. Things get broken with little or no punishment. Focused attention is usually not in your direction, or limited most of the time. Vacations are usually planned around your sibling with special needs with most of the accommodations of a trip focused on their needs. Awkward moments when in public.

All of these things…and many more not mentioned could build an attitude of resentment and contempt. But, we have found this is not true in most cases. If you are a frequent follower of this blog you would know that we have 5 children, two of which have complex medical and other special needs. We have countless appointments, procedures, surgeries and a revolving door that keeps our home operating more like a mini hospital and care facility than a place of rest and solitude. What we have experienced is that our three “normal” children are not normal at all. They have developed a life of self-sacrifice. They have a heart of a servant and have become more tolerant, more compassionate and have more empathy towards others.

Isaac climbed up on Megan's back and fell asleep.

Isaac climbed up on Megan’s back and fell asleep.

To say that we are proud of who our children are becoming and who they are now as the oldest ones transition into adulthood is an understatement. Yes, there are bad days. But bad days do not define or erode a caring heart that has been built on faith and a constant reminder of how God’s unique fingerprints are all over our household and in their lives. They have witnessed miracles and have experienced the good in a community of people who are on a similar journey. They have also experienced pain…pain in friendships lost over the awkwardness of their special needs siblings. They have experienced humiliation as their brother has removed his clothes in public. They have experienced stares and glares as their brothers have acted out on an outing. Even with all of the above, and more, they have learned how superficial, self-centered and cruel people can be. Even though they have (or will) mourn the loss of a normal relationship with their siblings, they love them more than words can say. They are their brothers’ ally, their protector, caregiver and advocate. They wear the pinch scars on their arms, the drool on their shirts, and the random Velcro diaper tab (one of Matthew’s constant fidget items) on their clothes as a banner of solidarity with their brothers.

I have a story I would like to share with you about our youngest daughter Sarah Anne. It is a reminder that she is on this same path of her older sisters. I had installed some LED sensory/therapy lights in Matthew’s bedroom along the ceiling that randomly change colors. Both Matthew and Isaac LOVE these lights. They will lay on the floor and watch them change for long periods of time. I liken their gaze to the mesmerizing trance one gets while looking into a burning camp fire. One day Matthew was curious about the little black box that was attached to wall by his door. Even though it was higher than his reach, he positioned his mattress on edge and was able to climb up and grab hold. In the process he ripped out the wiring for his lights. He didn’t understand the consequences of his actions and just wanted his lights back. After a day or so of sadness, Sarah Anne sprung into action. Without asking or telling us what she was doing, she gathered a box of toys and asked me to set up her little card table next to the driveway as I was working on one of the cars. She arranged her toys and made the announcement that she was having a yard sale to raise money to pay for new lights for Matthew. We held back tears as this little five year old already “gets it”. Although she was crushed that no one stopped. We assured her that it was because it was a Sunday and she didn’t have adequate time to advertise and let people know about her sale.

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Sarah Anne’s first sale attempt. Who wouldn’t want to help this smiling face?

Fast forward another few weeks. This is where the goodness of people shine and is the reason we stay so positive. We had planned a time for Sarah Anne to spend a couple of days with her aunt, uncle and grandma as we had some appointments for Matthew and Isaac a week apart on the other side of the state. Her aunt and uncle happen to own a large antique mall in that area. Sarah Anne’s aunt Linda sprung into action and arranged for her to have a table in the mall for a few days each week. A local paper picked up the human interest story and ran an article announcing the sale. Although there was some confusion with Sarah Anne’s answers, the story announcing the sale of a little girl raising money to buy her brother some “new legs” was a success. Sarah was able to raise enough to cover the lights and to add a few more things for Matthew and Isaac’s sensory appetite. She even went shopping for the lights with me and helped me install the new ones.

If you’ve gotten anything at all out of following Christ, if his love has made any difference in your life, if being in a community of the Spirit means anything to you, if you have a heart, if you care— then do me a favor: Agree with each other, love each other, be deep-spirited friends. Don’t push your way to the front; don’t sweet-talk your way to the top. Put yourself aside, and help others get ahead. Don’t be obsessed with getting your own advantage. Forget yourselves long enough to lend a helping hand. Philippians 2:1-4 (The Message Bible)

Do we have concerns about Isaac and Matthew’s siblings? No…even though we don’t do it perfect all the time there are a few things we could share about how to balance the attention. Make time for one-on-one time with your kids. Take them shopping, take them for a pedicure or a massage (I don’t do the pedicure), take them to the annual Sport Fishing and RV Show (I do this one). We also work hard and allowing them to have time when they are not “on call”. Sure, they jump in and help whenever we ask to with a feeding or a diaper but we don’t expect them to be the constant caregiver. We allow them to be angry over a broken personal item, we allow them to be frustrated and try to express it with the guilty one that they are angry. We allow them to vent about Matthew’s skill of deleting profiles, again, on our family Netflix account. Although they grumble at times when there is yet another change in the schedule, they roll with it and we plan again. We know that through all of the above incidents they have made them more patient, more caring and less self centered.

We could all benefit from living a life of sacrifice and caring for another who potentially will never give anything back in return. We could all benefit from the life lessons of a special needs sibling.

Kevin is available for speaking to groups of any size. Click on the “Want Kevin to speak at your event?” tab above for more information. You may share our story, our prayer needs and this blog as you feel led by using the share buttons below. If you would like updates on when new content is added to the blog or to keep up with current prayer requests for the Troupe’s you may subscribe at the top of the right hand column of this blog.