Keeping Things in Persepective
It is difficult to leave the house to do what I would call “regular” things. Getty’s health is such a concern that often times it is easy to forget what is going on out there in the real world.
It is clear that since Getty’s diagnosis, my perspective on life has changed considerably. Concerns I once had or “issues” I thought I had don’t seem to add up close to this; this is big! You certainly figure out very quickly who your friends are in moments like this. I can’t stress that enough. Family and friends have been the backbone to our stability. We haven’t had to make a meal in about two weeks, and we owe that all to extremely kind individuals. Phone calls, emails, and very sweet cards letting us know that they are thinking of us are so very heartwarming and kind.
I am on the inside of course, so I can’t quite understand what someone would think about our situation as a bystander, but I can see how this may be uncomfortable. I can see how it can make you look at your own life, your children, and think how on earth could a family go through this? We really want to thank those that have treated us no differently than before this diagnosis and, if anything, have genuinely offered even more love and support now that we have bigger hurdles to jump. There is a special place for you in our hearts.
I guess for people who wonder how we do it, well, you just do. This situation isn’t about us, Getty is driving this car and we are here to make sure she is safe and getting what she needs to thrive. I have had some concerned strangers tell me that I am brave for doing this. I might respond, “Doing what? Loving my child? Oh, that is certainly easy.” Then I usually follow that up with, “but this could be you or someone you know so easily. SMA certainly does not discriminate.”
Today I saw a video that completely captured what I have been feeling. This sense of knowing that SMA can become a part of any unsuspecting family was captured in this video. The Gwendolyn Strong Foundation is a non-profit organization that raises money for research, raises awareness, and provides support to families. It is named in honor of the Strong’s beautiful daughter, Miss Gwendolyn. The Strongs are an inspiration to us, and we call on them a lot for advice and guidance.
Please take a moment and watch the video. Thank you to the Strongs for putting together such a “strong” message for people to consume.
In reading today’s blog, I am reminded of the population I work with (hospice). So often, when someone loses someone and they are grieving, people say the old standard sayings, “You are so strong.” “God never gives you more than you can handle.” “He/she is in a better place….” So on and so forth… As well meaning as people are, most are at a loss for words and say the usual phrases that we have heard a thousand times. They are not always true or accurate statements and sometimes we want/need to teach them a little lesson – which is fine! People just don’t know what else to say when they are faced with an unknown situation. When we are thrown into a life situation that is out of our control, we do what we have to do. We are parents and will love our children. We care for those we love without question. We have no choice. We do, however, have a choice in how we deal with it: with dignity, grace, and love. As an outsider looking in, I have been in awe of you and your husband – your honesty, your ability to put your fears, your triumphs, the simple gratitudes, etc., out there. You are wonderful parents to a darling little girl and you have been truly blessed, not only for the little love in your life, but for your family and friends who have rallied around you.
Thank you for sharing your lives with us. I continue to keep you all in my prayers.
utterly speechless. I so often hear you and Mark thanking others for loving, supporting, and being present for you. We are thanking u, such an intensely personal, painful, taking journey that you’ve allowed us to see and hear about. Teaching us about the true meaning of life, what it means to truly give of yourself, be a part of something bigger than yourself.
Not every person could take this journey. All the SMA families you tell me about our such amazing warriors. You can only love and fight along side all of you after all you continue to give and teach us.
All my love ALWAYS
A powerful message indeed. Takoa, well said. I couldn’t agree more. I think of your family daily Kate.