As Christmas draws closer and closer, the discussion of what everyone wants for Christmas is in full force. For some reason on my walk this past week I started making an anagram with the word gift. I figured I would share the gifts I have in my life that helps me through the good and the bad times.
Generosity of others: This weekend we were invited to Texas to see my friends who we met shortly after diagnosis. Her husband started a non-profit to bring children with special needs and veterans on a once in a lifetime outdoor trip. When Duke started Southern Outdoor Dreams (SOD) he called Patrick and wanted to make it happen for Wyatt. It took us over a year to get it planned and all of the dates to work but we made the drive last Friday.
Meeting the men who started SOD, the guys from CrossHeirs ranch, and the woman Jennifer who sponsored the trip was truly amazing. Their kindness and generosity is something we will never forget.
Irreplaceable friends: This is a big one for me...my friendship with Patrick, my neighborhood friends, my "work" friends and my DMD friends is undeniably a huge gift that helps me daily. I can not do life without y'all. I know I complain a lot about how hard life has been but my best friends know when I just need someone to listen, not fix it. Patrick and I have been faced with some pretty big challenges and to know I have someone(s) to turn to when I just need to cry and let it out makes life that much easier.
Family: What can I say about my family? They are there for us through thick and thin. Having a son with special needs means adapting our lives all the time to make sure Wyatt and all of us can live our best life. The gift of children, especially my little guy Wynston who loves hard and plays hard. He is Wyatt's biggest cheerleader and I can't imagine our life without him. Life is definitely not easy being the sibling of a special needs child but at the end of the day he is the model sibling.
I am also very lucky to have my parents, in-laws, and siblings near-bye who are willing to help when we need it. This is not the fact for others in our DMD community so they are definitely a gift in my eyes. And last but not least the gift of the extended DMD family. Those who fight everyday for our boys with Duchenne and put their children in clinical trials to help find a cure with no promise it will work. And the DMD boys who agree to be in the trials go through more in their childhood years than many go through in their entire life. I don't want to imagine what life would have been like if we didn't have all of these people in our lives.
Time: Time is the gift that I will never take for granted. Since October 31, 2007 the gift of time is something that I relish. From diagnosis day I try to make sure I don't let a day go by without telling my family how much I love them and how I can't imagine life without them. Over the years we have made family time a priority; either all 4 of us, each child separately or just us as a couple. As Wyatt progresses it becomes even more important to me that we take advantage of the time we have with him still being able to walk (though getting less and less) because once non-ambulatory the planning is going to take as much time as the actual trip. I would not give up a minute of the time I spend with my family or friends because as we all know the days are long but the years go by so fast.
As I have said in multiple posts since September, post IDA has been stressful. I have questioned decisions we made for our family in order for me to be home and take care of Wyatt. As l look at the list above I realize that we have made decisions that are best for our family and I wouldn't change it for anything. Others may think that we should be doing it differently but when life threw a curveball last week and Wyatt couldn't go to school because his aide was quarantined I took a deep breath and said this is my why. I thank God that I am able to work from home and be there when he needs me, I am grateful for my family and friends and for those who are following our journey in order to support us and our DMD community. Merry Christmas everyone count your intangible gifts this Christmas and you will see the true gifts you have.
If you would like to donate to help find a cure for Wyatt and others with DMD please consider these 2 non-profits.
Sending love and Christmas Blessings to all of you ❤