Thursday, August 21, 2008
Awhile back I was sitting in church just glancing through the bulletin,waiting for church to begin. I got to the "Pray for the Sick" section within the bulletin and began reading. There was Zoey's name. Comforting in many ways but in others, a stark reminder.Glad for the support but also ,in truth, no matter how strong your faith is,you just get this little shiver when you see your child's name in print or hear it spoken during petitions. As I continued reading, I came to a name and stopped. "Baby Gwendolyn Strong". Such a beautiful name.And like most who see a name when prayers are called for,especially for a baby,you wonder.You pause. A sadness comes over you and you think, another baby.Another family facing some crisis.Maybe and most likely, entering uncharted territory. Seeking support,where ever they can find it.Once again that word unfair came to mind.Fast forward to about a month or so ago. An email was forwarded to me asking to specifically pray for a family and a baby in need of support.A family asking for prayers. The baby,Gwendolyn Strong.There was that beautiful name again.Accompanying the email was a link to a blog for those wishing to "meet" this family and learn more about what they were facing. I immediately clicked over and before me was a beautiful face to match that beautiful name.And what followed was a beautiful and yes, unfair story of a journey that no parent,no baby should be asked to travel.I left a message. Unsure quite what to say.Hoping my words sounded sincere,trying to convey to them what stirred within me as I read about the path they were journeying and the grace with which they were doing it. Yet another amazing family trying to make sense of the senseless. I left a few more comments over the next couple of days.Not wanting to be intrusive and always wondering if you were in fact crossing beyond boundaries and into another families personal ,private and often painful journey.It is a fine line you walk in this blogland. The desire to reach out and the fear you may reach too far.I continued to check on Gwendolyn daily.Sometimes multiple times a day.The other night an email popped up in in my inbox:Gwendolyn's mom.I read her kind words.Unnecessarily thanking me for my words of encouragement.I sent her back an email and heard back from her again the next day. She and her husband have allowed me to tell you a bit about Gwendolyn.Share Gwendolyn's story in hopes it brings awareness to a devastating disease that effects thousands of children.Tens of thousands. I feel privileged to share this with you today .I know I won't come close to doing their story justice.Their words are far more eloquent, real and honest. For it is their story. I could never match that.I will tell you this much,I find it hard to believe that you too will not be touched beyond words after you hear their story. A story that began like most of ours. With a child's birth. And with that birth,hopes and dreams.Gwendolyn was born October 4th of last year.Beautiful,,healthy and strong.Subtle signs ,symptoms and illnesses sent them all over the emotional road map trying to pin down what might be happening to their precious daughters little body. After 6 months of ups and downs,a variable roller coaster of a journey,they indeed found an answer but one they so wished they had not. In April of this year Gwendolyn was diagnosed with SMA1,Spinal Muscular Atrophy Type 1. A terminal genetic disease that results in the loss of nerves in the spinal cord and weakens the muscles connected to those nerves.They were devastated but somehow they have rallied and continue to live their lives in a way that I am in complete awe of .They are living each and every moment they have with their daughter to the absolute fullest. They also have single handily spearheaded a Petition To Cure SMA.The petition is seeking to push legislation through to allocate federal resources to fund much needed and urgent research. I urge you all to take a couple of minutes to sign.It is such a small gesture that can and will make a difference.I commend them on their selfless efforts at a time when no one would blame them for actually being selfish in their day to day living .Retreating.But instead, they are out there spreading the word. There is also an American Express "Cure SMA" opportunity for you also. I again ask you to take another few minutes to fill that one out.Maybe you could even take it a step further and email family and friends and illicit their support as well. Something so small that will mean the world to Gwendolyn and the countless others like her waiting on their miracle.Take some time while you visit these sites I have linked you to and look at some of these faces that God has graced this world with.Look at Gwendolyn.I defy you to walk away unchanged.Maybe even eager to do your part. Make a difference.When you come to the Petition Site,there is a blank area where you can leave a message and say why you are choosing to sign. On the night that Mark and I signed,we read a few of the comments and the one that will stay with me forever was ..."Because Kylie deserves to dance at her prom." That absolutely broke my heart that night.Made me angry all over again. Made me incredibly sad. Made me realize yet again how very connected we all are and can be, if we just step out of our comfort zones and into the world outside our own little boxes.So stop by and meet this precious child. Her mom Victoria and daddy Bill. Sent your prayers their way for strength.Take a little time from your day and sign those petitions.My thanks to Bill and Victoria for allowing me the honor to share a bit about their lives,their journey,a precious piece of their world, with you all. And to Gwendolyn. You are a gift to so many.Some you have never even met.Living proof of all that is pure and good. A little girl sent to this world to teach us once again to choose our moments,live our moments,make the most of our moments.Decide how will we use our time here and these very finite moments. It is in these moments that my faith once more is tested but somehow I always come full circle and know, He is here,beside us and most especially present in these moments.