Kinship

As a mom of a son with CHARGE Syndrome, I feel a special kinship to others who are like me. I have yet to actually meet any of the other parents in person, although it won't be long....but, I still feel a special affection for these special people; the kids with CHARGE and their families. We are brought together not by family ties, but by the similar medical experiences and situations. We understand the challenges each other have faced and continue to face on a daily basis. The fear, the heartache....dealing with doctor's appointment, endless procedures....and dare I mention the 'looks'. We look to each other for encouragement, love and support.

Tonight as I write this, my heart aches for Paul and Noel Gilman and their family. Today, they lost their son, Alex, who was nine years old. It's hard to understand and accept the loss of a child. I have read so many beautiful words on Noel's facebook page. There is no doubt in my mind that Alex's short life touched more people than we will ever know. So many times since Matthew was born, Mike and I have faced losing him.....there were so many close calls.....reading Noel's posts have touched me and brought back so many memories. I am honored that I was given the chance to see the love that this family shared.

Life is a precious gift.

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love." Washington Irving

Sweet

Sorry that I have not posted in a while.....things have been pretty much the same. Matthew has had good days and bad days. The good days, full of giggles and silliness are fun, but the bad days....the ones with the crying and pinching, hitting and biting, are pretty tough to deal with. Because of this, we hardly go anywhere anymore.

Today however, was different. Today we ventured out despite the warnings of ice and snow. We traveled to Bryant to see our grandson, Xander, be dedicated at church. It was quite an adventure! We got up and got ready, and let me tell you, I was worried. All of the weather forecasts promised bad weather, and Matthew started the day off upset. I had to medicate him and just prayed for the best. To make things worse, Cody and Dedra had to head back to Nashville today, so we were already missing them and worried they might get into bad weather as well. We got to the church in Bryant just fine, but had already received word that sleet was accumulating at home. We weren't able to hang around and spend time with Alyson and Xander, instead we had to get on the road as soon as his dedication was over. I have to say, in spite of the weather and how the day started, it ended up great. Matthew held Xander for the first time, and they seemed to like each other. lol And although what should have taken us just under 2 hours to get home took just over 3 instead, we made it home safe. In fact, everyone did. Alyson and Xander are safe at their place,   and Cody and Dedra are safe at their place in Nashville. Matthew even laughed most of the way home.

What an adventure! ♥