This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

November 25, 2007

Monday, June 14, 2010

In the spirit of Thanksgiving, we felt compelled to share with you some thoughts. This holiday season has been an emotional one for us, and it is sometimes very, very hard to keep focused on what we have to be thankful for. So, to help us remember, we offer these words:

We are thankful for our friends and family who love and pray for us. We are thankful that Michael has a future that is full of health and hope. We are thankful for our parents and Aunt Louise who have come to stay with us in the past months. We are thankful for your emails of hope and encouragement. We are thankful for the gifts and cards you have sent to Michael and to us. We are thankful for the E___ family who are tremendous role models. We are thankful to live in an area where Michael can have surgery so quickly. We are thankful to live so close to specialists who know how to treat Michael. We are thankful for our employers, who have been more understanding and supportive than you can possibly imagine. We are thankful for our friends who have more pain than we do who still have the strength to listen and advise. And most of all, we are thankful for all of you who watch and read our story and help carry us through the times when our hearts are heavy, our bodies are tired, and our will is flagging.

We wish we could have had a professional baby picture of Michael in the hospital. We wish we could take a picture of Michael crying on Santa’s lap. We wish we could give our son a bottle and have him drink it. We wish we didn’t have to have a joke about Michael's friend “blue tube” that follows him wherever he goes. We wish we knew what to write in his baby book on the pages that assume our child was healthy and whole and home in three days. But, we know that the tide will turn and that in the end we will all be healthy, whole, and stronger for these hard times.

Seeing kids in strollers at the shopping mall or grocery store causes pain. Hearing children laugh on holiday commercials on TV causes tears. But then, seeing Michael smile and giggle causes joy. Watching him explore his world brings smiles. Knowing that some day this will all be behind us keeps us getting out of bed every day.

In the meantime, our nanny situation is desperate, and if there is one thing we need more than anything else, it is an answer to this problem. If anyone knows a retired nurse or someone who wants to learn to care for Michael, please send us an email. In the end, the only job requirement is common sense. We don’t expect anything for free, and we will pay a salary with vacations and with all taxes withdrawn from the paycheck. Time is not on our side, and the only options left are painful and hard to contemplate.

Smile through the tears, and laugh through the pain because these things will always be with us. And, no matter how bad things are, they could always have been worse.

Happy Holidays, everyone. :-)

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