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February 1989 ~ that's when you entered our World, or perhaps more accurately, we entered yours. From then on, life changed in an instant. Everything we knew, or thought we knew, was different. It was a new normal that we would have to navigate and adjust to. When you were born, you were whisked away to the Neo-Natal Intensive Care Unit. I was transferred with you, as I insisted that I go ~ even if that meant discharging myself against medical advice and driving the 1.5 hours to the hospital where they were taking you. Didn't matter to me that I was post-op, right off a c-section... nope. I wanted to be with you.
We were told that there would be no "heroics" (whatever that meant) and when I asked what that meant, the doctor (Dr. Bell) gave a long-winded answer that really didn't answer my question at all. But then again, I was learning a new language. I have to say, I did pick it up pretty quick. It was do or die, literally, in those days, and I knew your life was basically in our hands. We had the 'choice' to remove you from life support or reject the g-tube or whatever. Even though you were so small, 4lbs, 10oz; in the NICU you were a giant compared to the tiny preemies.
I didn't know any different, you were our first. So at 4 months, you were still alive and quite a bit of heroics had taken place, including you surviving several full codes (heart and breathing stopped); CPR done on you for over an hour; Congestive Heart Failure, a Trach, G-tube, and countless pneumonia's and other things like RSV. So when they called the meeting per our request, we wanted you home, it was immediately established that they were only sending you home to die; there was nothing left they could do for you and we had to state to them we understood the dire circumstances. It was almost funny if it wasn't so serious that anyone could possibly "under-estimate the severity" of the medical issues you had. You came home on a full vent (breathing machine) and you needed cardiac meds for the congestive heart failure You were born with a complex chromosome translocation and it affected you head to toe literally. Your brain had no known gyral pattern and you were missing the connection (corpus collosum) and you could not swallow, cough or eat (no gag reflex) which can be an issue when the stuff going down the esophagus ends up in your lungs .... hence the g-tube and trach. You had as ASD which is a heart problem and just everything else all the way down to your bi-lateral club feet. Several operations later, you were on your way ~
Baby steps.
Slowly, you improved at home, still attached to your CPAP machine that helped you breathe, baby steps. Up in your walker, we were determined to treat you just like a regular, typical baby. And we did. But you were always older and wiser, causing me to comment one time to your father that you just didn't seem like a baby ~ looking into your eyes it was almost as if you were older somehow and, in fact, you always did the leading .... you took us along on this journey.
Baby steps.
It took a lot of work and some days, it was two steps back, one step forward, sometimes no steps forward and sometimes, more often than not, leaps ahead. You definitely kept us hopping and your zest for moving and grooving through life was pretty clear.
It wasn't long before nearly 20 years seemed to fly by. It got harder for you to be up and you generally used the power wheelchair to get around but you still used your walker ~ always taking a step forward. Especially if it involved your father's motorcycle.
This was taken along one of our many road trips and adventures. Always smiling, you were 'up' for pretty much anything. It made life so much easier to have a spirit like yours. I have never seen such an incredible amazing spirit guide ~ the profound influence you had on us and others. Of course it worked both ways, so many people loved you and now so many people miss you because of all you gave.
I know that you were getting tired. It was harder to get around for you and again, we knew we would need to make adjustments. I always half-joked that you would go right from High School to retirement, not necessarily a bad thing; I had plans for us to do this and that ... and now those plans, Bryant are gone. But in the midst of my absolute angst and grief over the loss of my compass it has become clear to me that, again, it's going to be baby steps. I look at how far I have come. I know I will most certainly go backwards in my grief, but as in your life, I know that means a leap will be coming to propel us forward. I cannot overstate how obvious that has become and to me, that's a huge leap. I could not imagine ever going anywhere you hadn't had the opportunity to go. Yet somehow, you have found a way to keep 'pushing' me. Now, because of you, we will visit the Florida Keys. Initially I had thought "no way" because I know how much you loved the beach and how sad it would be that you weren't with us. Then it hit me, that's so untrue. The reason I even have the opportunity to go to the Keys and California (we are doing a mid-west trip as well) is BECAUSE of you!
One of the friends I know, because of you, has generously offered to let us use her house at the Keys. So you will be there. And, the California thing? That's a Compassionate Friends Convention. I had dismissed that early on, because you would never have gone there and how could we go without you? Ha. Then I realized, it's, again, BECAUSE of you that we have this opportunity to go.
Oh the Places We'll Go. The Dr. Seuss book. You know, in the beginning it seemed almost like a Dr. Seuss World where lived, the language of the medical world and special needs world - someone even wrote a poem to the Dr. Seuss "Green Eggs & Ham" regarding IEP's. And really, that's how it was and is. Your sister is planning the road trip, quite excited about the geography part of it. And Liam wants to see the "petrified forest" - and Emily just loves to travel - you both were my little adventurers back in the day and she continues that love of life Bryant. We all do. Sometimes it's just so hard to move forward. And I think of you, the visuals above, the photos of your tiny feet and the ones of you on life support, but you fought and you smiled and you loved and most importantly you lived. You did not just survive or exist, you lived. There's a profound difference and you clearly knew that.
Quite a comparison. This was done for the speech I gave at Children's Hospital in Boston, MA regarding how successful one could be with a tracheotomy. How someone could over come the unimaginable obstacles you had to ~ and to grow up into a man. Wow. I got to be your side-kick, we all did and it was one hell of a ride.
Another slide from the presentation shows us meeting (then) Red Sox player Mike Timlin, meeting with (then) Senator Sununu and just regular life at the Mall. All of these were because of you. Your charitable work for the Children's Hospital when we met the Red Sox at the fund raiser; the trip to Washington DC to meet with the Senator(s) and other Legislators regarding health care. I would say you made the rounds and you made a difference and you made an impression.
So I guess that's what we miss so much. And then just being in such distress, such grief, it was a new World, this time without you and this time definitely void of any sunshine or light. However, the lesson is that you still are with us; that's impossible to take away and you have left me actually quite well-equipped with so many people who love and cherish your memory. You took care of me Bryant and apparently, you still do.
So it's forward I go, we go as a family, baby steps. And some pretty big leaps.
Through the terrible horrible darkness of grief I have found that ray of hope. This new journey we are on, we did not choose nor did not want. But it is the journey we must take, nonetheless. I thought it would be without you and that's why it's just so hard. Yet these events, these opportunities, I realize, are gifts from you. You brought them forward and wrapped them up. We just have to open them. And you know what Bryant? That's my very plan. Or maybe yours :)
To Infinity and Beyond Bryant. Like Buzz Lightyear says! Oh and Dr. Seuss ~ Oh The Places We'll Go! All together, always. I love you beer nuts ~ jimmy legs xo xo Mommy :)
We were told that there would be no "heroics" (whatever that meant) and when I asked what that meant, the doctor (Dr. Bell) gave a long-winded answer that really didn't answer my question at all. But then again, I was learning a new language. I have to say, I did pick it up pretty quick. It was do or die, literally, in those days, and I knew your life was basically in our hands. We had the 'choice' to remove you from life support or reject the g-tube or whatever. Even though you were so small, 4lbs, 10oz; in the NICU you were a giant compared to the tiny preemies.
I didn't know any different, you were our first. So at 4 months, you were still alive and quite a bit of heroics had taken place, including you surviving several full codes (heart and breathing stopped); CPR done on you for over an hour; Congestive Heart Failure, a Trach, G-tube, and countless pneumonia's and other things like RSV. So when they called the meeting per our request, we wanted you home, it was immediately established that they were only sending you home to die; there was nothing left they could do for you and we had to state to them we understood the dire circumstances. It was almost funny if it wasn't so serious that anyone could possibly "under-estimate the severity" of the medical issues you had. You came home on a full vent (breathing machine) and you needed cardiac meds for the congestive heart failure You were born with a complex chromosome translocation and it affected you head to toe literally. Your brain had no known gyral pattern and you were missing the connection (corpus collosum) and you could not swallow, cough or eat (no gag reflex) which can be an issue when the stuff going down the esophagus ends up in your lungs .... hence the g-tube and trach. You had as ASD which is a heart problem and just everything else all the way down to your bi-lateral club feet. Several operations later, you were on your way ~
Baby steps.
Baby steps.
I know that you were getting tired. It was harder to get around for you and again, we knew we would need to make adjustments. I always half-joked that you would go right from High School to retirement, not necessarily a bad thing; I had plans for us to do this and that ... and now those plans, Bryant are gone. But in the midst of my absolute angst and grief over the loss of my compass it has become clear to me that, again, it's going to be baby steps. I look at how far I have come. I know I will most certainly go backwards in my grief, but as in your life, I know that means a leap will be coming to propel us forward. I cannot overstate how obvious that has become and to me, that's a huge leap. I could not imagine ever going anywhere you hadn't had the opportunity to go. Yet somehow, you have found a way to keep 'pushing' me. Now, because of you, we will visit the Florida Keys. Initially I had thought "no way" because I know how much you loved the beach and how sad it would be that you weren't with us. Then it hit me, that's so untrue. The reason I even have the opportunity to go to the Keys and California (we are doing a mid-west trip as well) is BECAUSE of you!
One of the friends I know, because of you, has generously offered to let us use her house at the Keys. So you will be there. And, the California thing? That's a Compassionate Friends Convention. I had dismissed that early on, because you would never have gone there and how could we go without you? Ha. Then I realized, it's, again, BECAUSE of you that we have this opportunity to go.
Oh the Places We'll Go. The Dr. Seuss book. You know, in the beginning it seemed almost like a Dr. Seuss World where lived, the language of the medical world and special needs world - someone even wrote a poem to the Dr. Seuss "Green Eggs & Ham" regarding IEP's. And really, that's how it was and is. Your sister is planning the road trip, quite excited about the geography part of it. And Liam wants to see the "petrified forest" - and Emily just loves to travel - you both were my little adventurers back in the day and she continues that love of life Bryant. We all do. Sometimes it's just so hard to move forward. And I think of you, the visuals above, the photos of your tiny feet and the ones of you on life support, but you fought and you smiled and you loved and most importantly you lived. You did not just survive or exist, you lived. There's a profound difference and you clearly knew that.
Another slide from the presentation shows us meeting (then) Red Sox player Mike Timlin, meeting with (then) Senator Sununu and just regular life at the Mall. All of these were because of you. Your charitable work for the Children's Hospital when we met the Red Sox at the fund raiser; the trip to Washington DC to meet with the Senator(s) and other Legislators regarding health care. I would say you made the rounds and you made a difference and you made an impression.
So I guess that's what we miss so much. And then just being in such distress, such grief, it was a new World, this time without you and this time definitely void of any sunshine or light. However, the lesson is that you still are with us; that's impossible to take away and you have left me actually quite well-equipped with so many people who love and cherish your memory. You took care of me Bryant and apparently, you still do.
So it's forward I go, we go as a family, baby steps. And some pretty big leaps.
Through the terrible horrible darkness of grief I have found that ray of hope. This new journey we are on, we did not choose nor did not want. But it is the journey we must take, nonetheless. I thought it would be without you and that's why it's just so hard. Yet these events, these opportunities, I realize, are gifts from you. You brought them forward and wrapped them up. We just have to open them. And you know what Bryant? That's my very plan. Or maybe yours :)
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