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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

What’s in a Kiss?

We will celebrate with Matthew on Monday (June 28) his 9 year birthday. We can truly say that we have been blessed beyond words with all of the things we have learned, both good and bad with having someone like Matthew in our family. He has given us very unique chances to feel the fingertips of God in many ways.

A few days after this event we will celebrate the July 4th holiday. For the past 9 years this holiday has brought a totally different emotion for Theresa and I. Matthew was placed in the NeoNatal intensive Care Unit and Theresa was trying to maintain her bedside vigil and recover from an emergency C-section. We agreed to have her spend one night at home. We will always remember the morning of July 4, 2001 when we received the phone call that informed us that our little bundle of joy was hooked up to a ventilator, life support, during the night. Our hearts sank and our spirits were crushed as we were informed that Matthew was beginning to give up his fight to breath and process oxygen effectively. We were told that the ventilator would provide him relief. We visited and hung out with him most of the day. We wanted to provide some “normal time” to Hannah and Megan, and decided to take them to our small town fireworks. As our girls frolicked in the grass with sparklers, Theresa and I sat in the car, crying and praying for our little boy. Praying that the phone would not ring again.

Throughout the years we have had different “crying moments”…some of the bad and some of the good. A few weeks after the 4th, we will celebrate Sarah Anne’s first birthday. As I have been reflecting and thinking about what story to blog this week I continually have been drawn back to the first time that Matthew met Sarah Anne.

Matthew is not affectionate. He does not initiate kisses or hugs. If you ask for a kiss, he will just lean his forehead in to you and allow you to kiss him there. If you ask for a hug he will just lean in and allow you to hug him. Although this is the norm, he has surprised us a few times and has puckered up a couple of times.

Matthew has always been interested in babies. Whether it’s the sounds they make, the cry’s or the little hands and feet, he has always been gentle around them. Words cannot describe what we experienced when Matthew met Sarah Anne for the first time. I have included and link to a video clip we have posted on youtube. Please take the time to view it. It can only be described as one of those moments where the fingertips of God can be seen.

Another “crying moment”, this one of joy was added to our memory book on that day.

  • Joe DeGennaro

    Wow!!
    I cannot thank you enough for sharing your most treasured moments with your children. Is there any wonder Jesus tells us we need to act as little children?