In light of the amazing past 5 days, gratitude fills my heart and soul, but there aren’t words I can put together into sentences that would ever allow you to feel how you have all touched my heart and made me feel in this short amount of time. Between reflecting on the last 18 months and how are lives are so dramatically different with our new-found freedom due to E’s daytime oxygen-free status and processing the outpouring of positive thoughts, love and the incredible, amazing, and generous support for our inaugural Pruitt Wondertwins, March of Dimes team through participation, financial contributions and advocacy, I feel a glow in my soul, like a candle has been lit and I know that it cannot be extinguished. Perhaps it’s true happiness, or joy, or love, or some combination of these emotions, but I know that I will never forget how I feel right now and will take it with me each day.
If there hadn’t been such a major political event last night with the death of Bin Laden, I would have posted on Facebook to let everyone know, that thanks to everyone’s efforts, The Pruitt Wondertwins have raised $12, 525! To think that you helped us do this in just 49 days is incredible and to think how that money will benefit families through research, therapies, education and support is even more incredible.
As a personal experience for us, once we got out the actual door of our house, which is like wrangling cats with dementia, the MOD walk was like it was like a stepping aboard a time machine where I saw people who I spent day after day with in the NICU: nurses, friends, other babies, staff, social workers, people that I was isolated with that comforted me, educated me, advocated with me, conspired with me, and loved me and our family for the time we were there and when we could not be with anyone else. And then, I flashed forward and suddenly we are standing side by side with these people, our friends and family on a beautiful day with the sun shining and people laughing and in an air of celebration and everyone was happy. It was all a bit surreal, emotional, and lovely. As I could truly look around and pinpoint in time just how far we had come and to feel that rush of emotion in your heart when you are normally caught in the routine (or lack there of) of everyday life, was such a blessing. I felt like perhaps I had arrived in the proverbial forest or had arrived at the light at the end of the proverbial tunnel, but either way it feels like relief, happiness, and love. But our journey that day did not end with this lovely picture, for E and I the journey continued to a very special place that was all meant to be.
A few days before the walk I had been contacted by the wonderful Kathleen the Family Teams coordinator, from the March of Dimes who asked me, due to our success, if I would mind speaking on camera to tell our story. I said of course I would be happy to, I like to speak generally (as you can all attest:)), so she told me it would be a little later than originally thought and I would need to be there at 12. Having not walked in an event like this since I was 8 or so, I said ok, not fully comprehending how I would need to plan and just fyi for everyone else, apparently it only takes an hour or so to walk 3 miles, duh! But in my not knowing, and not planning correctly (which is hard for me to say due to my overactive planning and success gene), there ended up being a large gap between the walk finalizing and the 12:00 window. With one cranky wee one, Mr. Q, who wasn’t feeling so hot and had been up since 5:30, I made the decision to drop KSP at breakfast with the team, drop off the wee ones with GiGi and the head back out to the venue solo. But fate had something different in mind for me and E, and when I arrived home to drop off Q, she was sleeping so soundly in the car seat, I ran in put him down and made the game time decision to bring her with me.
Of course, she woke up after only driving about 10 minutes back out to the venue but in true E style she just smiled, cooed loudly and tried to poop (why does she always do that, it truly is a gift but I hope she grows out of it:)). When we arrived I changed her, double checked for Desitin on my face (I do learn from my mistakes), I put her in the Bjorn and off we went to meet Kathleen. I wasn’t sure if E was supposed to be with me or not, but Kathleen thought they would be happy to have us both. As we waited our turn E entertained everyone with her happy happy happy disposition and spent some long overdue time with mama outside of the house and cord free. Amazing for us both.
As each person from the March of Dimes came to introduce themselves and to meet E, it started to hit me what a truly exceptional organization March of Dimes is and what truly exceptional people are involved. The compassion and empathy flowed from these women and men and they really needed to say nothing for it was all in their eyes. As the tape started to roll and E sat on my lap, smiling with not just her mouth but her whole body, and I told our story, I couldn’t help but cry in parts as I went back in time, as healing is something that takes time that I have not been able to give. But as the producer asked me to think about them on the day the were born verses now, my heart exploded with love and E cooed loudly, smiled like the sun and answered for me. On the day they were born so small at 2 lbs 8 oz and 2 lbs 15 oz and only a foot long, I felt fear, confusion and true love like I had never known and now but now in that moment talking to the camera, I could honestly say, I felt no fear, no confusion, just pure love and thanks to KSP, to our babies, to our family, to our friends, and to the March of Dimes for providing funding for the research that has discovered many of the valuable elements like surfactant that allowed our babies to breathe when their lungs had not developed and kept them alive and for allowing us to share our story, for it was a time of healing for me and a special moment with E that I will hold safe and close in my heart.
You see, although I will try to remember the things you have all said and done, it has been the way you have all made me feel that keeps us all afloat and that I am storing deep in my soul. So, in this moment, I will choose the simple words, Thank You and hope that while those words may not move you, that all the emotion, unspoken and written words behind them will make you feel my love.