Good News and Scary News

It's been over 2 months since we have posted on Ollie's blog. We didn't intend for it to be that long, but life has been busy and we have been busy.

Boy howdy.

We are trying to make Ollie a big brother.

Some of you may have found out through Facebook or email or from friends and family but I know many did not. We'd always intended to use this wonderful place as a way to keep communicating with all the wonderful people that followed and prayed and helped that insane year of our lives. For one reason or another (mostly nervousness, I think), we never quite got the information up.

Before he passed away, we'd already begun discussing having more children (we'd hoped Ollie would get to see them, but knew that was sadly unikely). Last fall we begin meeting with the doctor's at Carolina Conceptions about conceiving children, hopefully unaffected by SMA. In the end, we decided to pursue In Vitro Fertilization (IVF) with Pre-implantation Genetic Diagnosis (PGD).

As fate would will it, we wound up with two embryos that were indicated as unaffected and those were transferred to Bekka in November. Both implanted and she became pregnant with twins: A boy and a girl. We were overjoyed (ecstatic even!).  Being cautious types nowadays, we decided to keep news of this quiet until we were sure all was progressing well. An amniocentesis performed at the end of February confirmed that the babies were SMA carriers but otherwise unaffected.

That's the good (no, GREAT) news.

Now for the Scary News.

We'll be making regular blog updates for awhile because Bekka's in the hospital. Babies aren't supposed to arrive at 22 weeks but these little guys tried and we are trying to stop them mightily. I'll sum up what has occurred so far in the next post. If you have been following on Facebook, this will be the place to go (but I'm cross-posting so you should just be able to click over).

Remembrances of Ollie

Today is six months.

That does not seem possible.

Each day, Bekka and I are learning to live life without our little guy and both of us are emotionally at a better place than even a month ago. They say that time is the great healer - and that is true. It doesn't mean we don't spontaneously break down in tears sometimes or that we don't have days where it's hard to simply get going in the morning, but it's better.

Last year around this time things started getting rougher for the three of us. I read that post now and it's amazing how naive yet prescient it seems. I barely remember Ollie having such a rough go of it that early. I think this is mostly because it was so very bad later on. In February of last year, I only had an academic idea of what we were in for. Two months later we'd have our first trip to the hospital. 4 months after that, Ollie would be gone.

We miss him terribly, but we surely do not miss the damn disease.

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I want to once again thank all of the wonderful people that helped us through our year of joy and pain. We could not have cared for our little boy and kept our sanity and our hearts intact without the love and assistance from so many. Ollie's life provides the world such a great example of an "us" society rather than a "me" society. It's so important to remember that we are all on this ship together.

You know who you are and you are all beautiful people.

Ollie and the Holidays

More than a few times over the holiday season, someone said to one of us “Christmas must be really hard” or “Thanksgiving must have been tough”. I suppose in some respects that’s true.

Yet somehow, the whole experience was gently uplifting

Yes, we looked at pictures and cried. Yes, we watched as kids were passed around or tore into their shiny-wrapped boxes. And yes, it hurt (a little). At the same time, it made us so happy to see other's joy and to absorb just a bit of that. Christmas and kids go together like the proverbial peanut butter and chocolate, and that’s a good thing.

Still, Bekka and I asked ourselves many times: “How did we survive this so well?”

It wasn’t all roses, but there were more flowers than weeds. We didn’t decorate this year - in fact we didn’t even get each other gifts. What we did do was see friends and tell stories and laugh a lot. We saw family, and we laughed with them too. OK, so we cried some in there, but it was never melancholy. Sad at times, yes, but never melancholy.

The answer, I think, lies in Ollie himself and the way we chose to celebrate his time with us each and every day. One of Ollie’s nurses commented that she’d never seen a family stay so positive yet so realistic. It wasn’t easy, but we felt it was something we had to do for him and for ourselves. We knew there was an endgame. We knew that it was coming sooner rather than later – but that it wasn’t a reason not to enjoy every little moment of this precious life we had been given. The results were many beautiful little memories tucked away – memories that taken together far outweigh the big bad ones. Ollie almost made it too easy. He smiled that big toothless grin and used those great big blue eyes to draw you into his angelic little world.

We look back and marvel we were able to observe every major holiday with Ollie. Thanksgiving, Christmas, New Years, Easter, Mother’s Day, Father’s Day (don’t think those weren’t special!) So many good memories for so many holidays. Remembering those times when our little guy was there to snuggle with – that’s what helped us get through what could have been a terrifying time.

I won't lie - we miss you terribly little man, but your time here was so special to so many. We’ll always have a Jolly Ollie Christmas in your honor.

One Million Dollars for SMA Awareness and Research?

Yes, you read that correctly.  One MILLION dollars.

But only if you help.

The Gwendolyn Strong Foundation (GSF) has already won $25,000 in the Chase Community Giving campaign on Facebook.  (That's Chase as in the big bank and credit card company.)  And, just as they pledged to do, they donated all $25,000 to SMA research at the University of California-Irvine, California Stem Cell, Inc., and Dr. Hans Keirstead.  (Check out this news release from Families of SMA for more info on the research.)

How did GSF win $25,000?  The same way they'll win $1,000,000...with your help!

Facebook users became fans of the Chase Community Giving campaign.  Then they voted for GSF.  And asked their friends to vote as well.  Simple, really.  GSF was one of the top 100 charities.

Voting for round two begins Friday, January 15th and ends Friday, January 22nd.

Will you help?  Please!

Will you ask your friends to help?  (Get some great ideas from the Strong family here.)

One million dollars would dramatically change SMA.

Dropping in to say Hi

I popped over to Ollie's Tale today and noticed it had been 3 weeks since we'd last posted anything and thought I'd make a little update and let you know how Bekka and I are doing. My standard response when people ask is "Good days, bad days but more good than bad."

It sounds a bit non-committal but it's really how it is. Days go by where you only think about the little guy a bit (and those are more and more often the good memories) and other days when the entire last year hits with the full weight of every event in every excruciating detail. Most days fall somewhere in between those extremes.

All in all, Bekka and I are doing pretty well. I'm (mostly) back to work full time and Bekka is still working part time at Stride Rite. We are putting our lives back together and enjoying our time with each other. In some ways Bekka and I are getting to know ourselves and our relationship again and that's been wonderful. The trauma we experienced with Ollie could have torn us apart but instead it's made our bond stronger and deeper.

Yes we wish we still had our little man to hold and pat and squeeze. We love him and we miss him, but when we think back to the torture we had to put him through every 2 to 3 hours that last month - we are glad he is in a more peaceful place. Never forget that SMA is a perverse and labor intensive disease for the caretaker and the child. Get tested so we can stop it.

SMA Featured on CBS' The Early Show

CBS' The Early Show segment, In Your Genes, this morning featured a family affected by SMA.  The couple lost their second child, a daughter, to SMA when she was just three weeks old.  When they decided to try to have another child, they chose to undergo in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD).

I have contacted our local CBS affiliate regarding our story.  My hope is that we can increase awareness of SMA and carrier testing as well.

Cross your fingers!     

7 Weeks Later

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.

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.)

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!

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.

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.

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!