This weekend we went to a fundraiser for a local charity, Jake’s Help from Heaven. The charity was started by a family–Heather, Brian and their son Ethan–who lost their son and brother, Jake, to an undiagnosed disorder that onset when he was 8 months old. The charity helps families of medically complex and fragile children fund medically necessary travel and assistive devices.
Their organization recently funded an iPad and communication software for Esmé to begin working toward communicating through pictures. While she hasn’t mastered it yet (she will, though), she can accurately identify images. So, communication through pictures will be so essential for her since she cannot form signs well (although she tries!) and cannot produce a variety of sounds.
It is truly amazing to see a family that has taken what they learned in advocating for a special needs child and the subsequent loss of that child as a call to help other families. I love the support that they offer to families like ours as well as the bravery and positivity with which they keep their son’s memory alive.
When they came to bring Esmé her iPad and communication software they are arrived as a beautiful and strong family, a family that is determined to serve on Jake’s behalf. We were in the hospital at the time–on our least intense hospital stay, thankfully–and I felt an immediate attachment to the four of them–because it felt as though Jake was in the room with them.
What’s more, their son Ethan, who is seven years old, showed such tremendous grace and pride in coming along on the delivery. There are not many children that age with the patience and calm to sit in a hospital room while setting up an iPad and app for a 20 month-old who was not much interested in playing. But he looked at Esmé’s saturation, checked out what she was doing in her crib, helped unwrap and set up the iPad, and spoke so sweetly that it almost brought me to tears.
Meeting Ethan has really made me think about the surprising blessings that are found in the difficulties of life with a special needs child. While I am certain that Heather and Brian are wonderful parents and would have raised amazing children no matter the circumstances and that Ethan has a lovely personality all his own, it seems that the special joys, tremendous patience, and required selflessness of life with a special needs sibling must contribute to the bringing up of some truly fantastic children.
It gives me hope. Hope for the human potential to learn and live kindness…and hope that, in the event that we are ever blessed with other children, they won’t have much choice other than to live with respect for and patience with others that I see in Ethan.
Families of those with special needs are supportive of others with special needs. So glad you have been able to meet some wonderful people to help you along your journey.
Most of your posts bring tears to my eyes, but good tears, not sad tears. You are truly an inspiration. I wish more people would read your posts.