Wow. This is post 100 of our journey with SMA. We didn't ask for the trip, but we'll be on it the rest of our lives and I want to thank so many of you for making it with us.
It's hard to believe that so little real time has passed. In so many ways we lived years of time compressed into those few, intense months. Months of love and anger, joy and sadness and more than a little helplessness thrown in.
Something that struck me today was the relative normality of that last Sunday before our little guy passed on. Amanda hit on that in a post on her blog today. Ollie had a bit of rough spot that afternoon - in fact, we'd had to give him morphine at one point because he would not calm down.
After a nap and some very successful suctioning, he had a fantastic evening. He patiently watched "Lost" (as Amanda rubbed his back) and was a chatty little fella the rest of the night, never really seeming distressed and he stayed up until late in the morning with his night owl of a mommy.
I still maintain that was his last gift to his mom and dad. He was saying "It's going to be OK. I'm sorry to be leaving so soon, but please don't worry and thanks for being great parents while I was here. I love you guys!"
Perhaps that's reading rather a lot into it, but that's just the way Ollie was. He always seemed to know how to make us feel better. A wink, a smile, a little chuckle just when things seemed dark. He taught us about unconditional love.
Bekka and I had wanted a child for so long. Life threw us a curve ball with a beautiful, but flawed angel. It wasn't (still isn't) an easy time.
Was it all worth it?
Hell yes.
Monday, September 21, 2009
Thursday, September 17, 2009
Bekka's Interview on the 2009 MDA Telethon in Raleigh
Hooray!
You can now see my (short) interview from the 2009 MDA Telethon.
(Thank you to Cathy, Rich and Neil for doing all the behind-the-scenes stuff necessary to post it online.)
You can now see my (short) interview from the 2009 MDA Telethon.
(Thank you to Cathy, Rich and Neil for doing all the behind-the-scenes stuff necessary to post it online.)
Thursday, September 10, 2009
Sen. Burr's Office Called....
...and he has co-sponsored S.1158, a.k.a. the SMA Treatment Acceleration Act!!!!!!
I'm soooo excited. I had contacted Sen. Burr, Sen. Hagan and Rep. Miller a while ago asking them to co-sponsor the bill (S.1158 and HR.2149). I got a generic email acknowledgment from Rep. Miller; no response from Sen. Hagan; and a nice, personalized letter in the mail from Sen. Burr.
And today one of Sen. Burr's aides, Anna, called to "close the loop" and let me know that Sen. Burr has co-sponsored the bill!
In North Carolina, only two Representatives have signed on (Rep. Mike McIntyre and Rep. Walter Jones, Jr.), so please do your part. Call the Capitol Hill Switchboard at 202-224-3121 and ask to speak with Sen. Hagan's or your Representative's office.
Your phone call can make a difference!
I'm soooo excited. I had contacted Sen. Burr, Sen. Hagan and Rep. Miller a while ago asking them to co-sponsor the bill (S.1158 and HR.2149). I got a generic email acknowledgment from Rep. Miller; no response from Sen. Hagan; and a nice, personalized letter in the mail from Sen. Burr.
And today one of Sen. Burr's aides, Anna, called to "close the loop" and let me know that Sen. Burr has co-sponsored the bill!
In North Carolina, only two Representatives have signed on (Rep. Mike McIntyre and Rep. Walter Jones, Jr.), so please do your part. Call the Capitol Hill Switchboard at 202-224-3121 and ask to speak with Sen. Hagan's or your Representative's office.
Your phone call can make a difference!
Monday, September 7, 2009
5 weeks later and the world keeps on spinning...
Today has been five weeks since we lost Ollie. I've struggled to find the words to describe life without my beautiful baby boy. The house is eerily quiet. No cartoons on the television. No beeps from his feed pump or pulse ox. And no sweet little boy talking on the phone to his Grandma or his Nana.
When I was pregnant with Oliver, and even after his birth, questions like "how far along are you?" and "how old is your baby?" received responses like "29 weeks" or "12 and a half weeks." And now that Ollie is gone, I find myself once again counting the passage of time in weeks. It seems so odd for the clock to have reset itself.
Since Ollie's death I've had a couple of opportunities to speak publicly about SMA. I blogged recently about my radio interview for Broadcasting Hope. Today, I was able to speak about Ollie and SMA during the local MDA telethon. It was a brief, live interview. I was able to mention SMA and Ollie's short time on this earth. I hope I made my little boy proud.
It is hard work to go on with your life after you lose your child. Often I make myself get out of bed, make myself take a shower, make myself go to the grocery store when all I really want to do is stay in bed. Distraction helps, but it can be a double-edged sword merely delaying the inevitable tears.
I have a difficult time focusing on one task and multi-tasking is nearly impossible. Neil said he thought it must be like having a massive case of ADHD (minus the hyperactivity). I'd have to concur. Our dear friend Amanda blogged recently of the See-Saw of emotions she has felt. I'd have to agree with her description, too.
Even though we may not want it to, the world does, indeed, keep on spinning.
Neil and I have both returned to work. To Neil's credit, however, he's actually working nearly full-time. And me? Well, I've worked about eight to ten hours a week for the past couple of weeks. Still, it's eight to ten hours out of the house.
On the whole, I'd have to say we're both doing reasonably well - as individuals and as a couple. We try to focus on the multitude of happy times - which can be quite bittersweet. We have our teary-eyed moments. And there will probably be more of them in our future. Thankfully, we've got a box of tissues on every smooth, flat surface in the house.
(Actually, some surfaces even have two boxes of tissues. There's a surface area to number of boxes of tissue ratio I've worked out. So far, though, there is no "app for that.")
While life is not "back to normal," we're making progress. Over the past year, I'd questioned what normal is. I think I've decided normal is what you make it.
And I'm making the best of it that I can.
When I was pregnant with Oliver, and even after his birth, questions like "how far along are you?" and "how old is your baby?" received responses like "29 weeks" or "12 and a half weeks." And now that Ollie is gone, I find myself once again counting the passage of time in weeks. It seems so odd for the clock to have reset itself.
Since Ollie's death I've had a couple of opportunities to speak publicly about SMA. I blogged recently about my radio interview for Broadcasting Hope. Today, I was able to speak about Ollie and SMA during the local MDA telethon. It was a brief, live interview. I was able to mention SMA and Ollie's short time on this earth. I hope I made my little boy proud.
It is hard work to go on with your life after you lose your child. Often I make myself get out of bed, make myself take a shower, make myself go to the grocery store when all I really want to do is stay in bed. Distraction helps, but it can be a double-edged sword merely delaying the inevitable tears.
I have a difficult time focusing on one task and multi-tasking is nearly impossible. Neil said he thought it must be like having a massive case of ADHD (minus the hyperactivity). I'd have to concur. Our dear friend Amanda blogged recently of the See-Saw of emotions she has felt. I'd have to agree with her description, too.
Even though we may not want it to, the world does, indeed, keep on spinning.
Neil and I have both returned to work. To Neil's credit, however, he's actually working nearly full-time. And me? Well, I've worked about eight to ten hours a week for the past couple of weeks. Still, it's eight to ten hours out of the house.
On the whole, I'd have to say we're both doing reasonably well - as individuals and as a couple. We try to focus on the multitude of happy times - which can be quite bittersweet. We have our teary-eyed moments. And there will probably be more of them in our future. Thankfully, we've got a box of tissues on every smooth, flat surface in the house.
(Actually, some surfaces even have two boxes of tissues. There's a surface area to number of boxes of tissue ratio I've worked out. So far, though, there is no "app for that.")
While life is not "back to normal," we're making progress. Over the past year, I'd questioned what normal is. I think I've decided normal is what you make it.
And I'm making the best of it that I can.
Five weeks and life is strange
Things have gotten better to be sure.
I think it's progress that I don't instantly get a tear in my eye or a lump in my throat every time I see one of the pictures of Ollie in the living room. What I do feel is a little sensation of falling - sort of what you get when you catch a bit of air driving over a small rise or first begin the long dive after cresting the hill of a roller coaster.
Usually, it's just that little bit of sensation. Usually.
Sometimes it's the beginning of a no-holds-barred emotional thrill ride and you pray to God that the brakes on the coaster/train/car are working. If they aren't, sometimes you collide with a brick wall, sometimes it's a "soft" landing into a sand trap. Sand traps mean you might have to close the door to your office and sit quietly a few minutes, brick walls mean you probably need a lot of Kleenexes and a dark room.
But there are positives moments now.
More and more frequently, when I think of Ollie, I can think of good times and not be filled with a terrible regret that we aren't still creating new stories and new moments. I can enjoy the many beautiful memories for what they are - a precious little gift from a special little boy that reminds his daddy that there were indeed some very good times.
The beginning of football season has been hard. Last fall, our little man would sit quietly for HOURS in the crook of my arm watching those funny men run across that green field. He only made noise when the commercials came on - or someone changed the channel - smart boy, that one. That is one of the fondest memories I'll carry forward of Ollie and it really makes the fall a bittersweet time. Right now, he should be throwing that little mini-football (probably backwards over his head, of course).
Recently, someone who had also lost their son far too early described the feeling as having a stomachache that doesn't go away. I've thought about it and can come up with no more apt description of what we are going through. A mass is sitting in the core of your gut and it just sits there gnawing. You feel it lessening, but sometimes the best you can do is be distracted. (Thank you friends and family) At anytime, Bekka and I might be having a moment of quiet (or not so quiet) desperation.
A couple of weeks ago, the good memories were the hard memories. The bad memories, save for that final horrible night, have been in many ways easier to block out. Who wants to remember having to stick a plastic tube down their little boy's windpipe? Or hooking a tube up to his stomach to feed him every few hours, or using a machine to try and make him cough 8 times a day?
That's not what Ollie's life was about. Ollie's life was about loving every moment BETWEEN the painful events. He did this without fail, and now his mama and I are trying to do the same.
As we try to figure out job situations, medical bills, COBRA payments and all the other debris left over from a short but complicated life, we try to take a little time to love each other and each moment just a little bit more.
The challenge is that we now have many more free moments.
I think it's progress that I don't instantly get a tear in my eye or a lump in my throat every time I see one of the pictures of Ollie in the living room. What I do feel is a little sensation of falling - sort of what you get when you catch a bit of air driving over a small rise or first begin the long dive after cresting the hill of a roller coaster.
Usually, it's just that little bit of sensation. Usually.
Sometimes it's the beginning of a no-holds-barred emotional thrill ride and you pray to God that the brakes on the coaster/train/car are working. If they aren't, sometimes you collide with a brick wall, sometimes it's a "soft" landing into a sand trap. Sand traps mean you might have to close the door to your office and sit quietly a few minutes, brick walls mean you probably need a lot of Kleenexes and a dark room.
But there are positives moments now.
More and more frequently, when I think of Ollie, I can think of good times and not be filled with a terrible regret that we aren't still creating new stories and new moments. I can enjoy the many beautiful memories for what they are - a precious little gift from a special little boy that reminds his daddy that there were indeed some very good times.
The beginning of football season has been hard. Last fall, our little man would sit quietly for HOURS in the crook of my arm watching those funny men run across that green field. He only made noise when the commercials came on - or someone changed the channel - smart boy, that one. That is one of the fondest memories I'll carry forward of Ollie and it really makes the fall a bittersweet time. Right now, he should be throwing that little mini-football (probably backwards over his head, of course).
Recently, someone who had also lost their son far too early described the feeling as having a stomachache that doesn't go away. I've thought about it and can come up with no more apt description of what we are going through. A mass is sitting in the core of your gut and it just sits there gnawing. You feel it lessening, but sometimes the best you can do is be distracted. (Thank you friends and family) At anytime, Bekka and I might be having a moment of quiet (or not so quiet) desperation.
A couple of weeks ago, the good memories were the hard memories. The bad memories, save for that final horrible night, have been in many ways easier to block out. Who wants to remember having to stick a plastic tube down their little boy's windpipe? Or hooking a tube up to his stomach to feed him every few hours, or using a machine to try and make him cough 8 times a day?
That's not what Ollie's life was about. Ollie's life was about loving every moment BETWEEN the painful events. He did this without fail, and now his mama and I are trying to do the same.
As we try to figure out job situations, medical bills, COBRA payments and all the other debris left over from a short but complicated life, we try to take a little time to love each other and each moment just a little bit more.
The challenge is that we now have many more free moments.
MDA Telethon
The Jerry Lewis MDA Telethon is going on now! I'm headed out to the local station (CW22) in a bit to answer phones. So please call in and donate!
And remember: You can ask for your donation to be earmarked for SMA!
Thanks!
And remember: You can ask for your donation to be earmarked for SMA!
Thanks!
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