Radio Silence

Radio silence was never supposed to happen, but as we know all too well…life changes.

Last year, I posted on Logan’s angelversary, but I didn’t post on his 4th birthday. I sat at the computer for what seemed like an eternity, and never found any words I could convey through text.

This year, I didn’t post on his angelversary. Again, I was at a loss for words. I knew I could have updated, or just said hello, but nothing seemed quite right for the moment.

In December 2016, just days before Christmas, we received the news there was an FDA approved treatment for SMA. We laughed. We cried. We sat in disbelief. An SMA mom we knew through Logan’s journey, and lost her little girl just a week after we lost Logan, had a baby boy last year. He was diagnosed with SMA while she was still pregnant and was able to receive the treatment when it was still being tested. Today, he is not only able to sit up by himself, but also stand! It is truly incredible to see how this medicine is changing the lives of so many.

The week of Logan’s angelversary this year, our beloved babysitter graduated high school. I honestly cannot comprehend how time has gone by so fast. I questioned many times if my emotions were due to missing Logan, or realizing in a blink of an eye, that beautiful girl walking down to receive her degree will be Claudia…

And speaking of Claudia πŸ™‚ She is an independent fireball child. I’m fairly certain her and Logan are complete opposites. He loved to sit, read and watch his shows on TV. Claudia has squirmed since day one and feels like she will die if not moving/running. She outruns most kids on the playground these days. We joke that you either get on the Claudia train, or you get run over by it haha. She will be an excellent adult one day…if I can just survive until then.

She helps keep Lucas in check too. He loves his sister dearly, but is quickly learning the toddler years can be frustrating. He is taking it in stride though. Reading is his main hobby. He absorbs all information thrown at him. He was an A+ student at school last year too! He misses Logan dearly, but he has done so well to rise above the challenges of grief. And just like in 2013, he still has no fear when speaking about his brother.

Brett graduated with his Master’s Degree this past May ❀ It has been a long road, but we are so proud of how much he has accomplished! He has been working towards his college degrees since Lucas was 2.5 years old. He has only taken off 2 summer semesters during that entire time.

As for me, I stay at home with my munchkins πŸ™‚ I’ve been involved in Lucas’ PTA at school. Claudia is developing into her own person more and more each day. If I could bottle just a tenth of her energy, we would no longer depend on coal or the sun! We could power everything!!!! πŸ˜€ Oh! And I almost forgot about our newest family members… *see below πŸ˜€

My plans for the foundation did not go how I imagined them. While I was pregnant with Claudia until she was about 16 months old, I suffered from severe depression and increasing anxiety. It was an extremely difficult time and I did not want to lean on anyone. Thanks to Brett, my friends and my doctor, we found the right balance I needed to live life again. It hasn’t been an easy path, but I’m better for it ❀ I can enjoy moments without guilt. I miss my Logan and always wish he was by my side, but the guilt of being happy without him physically with me has shifted into enjoying what we have in the present. Β “Behind us are memories, beside us are friends, before us are dreams” – unknown

Now that a treatment has been announced, I have been researching ways to help. We are unable to give families checks, or send checks with a memo line to a hospital for a specific family. If anyone has suggestions, please feel free to message me! I’m all ears!

It is July 6th, 2017. Logan would be 5 years old today. How that can be? I have no idea. In an alternate reality, I am freaking out that my baby boy is starting Kindergarten in 4 weeks. I’m running around like a chicken with my head cut off trying to keep up with the energy of all the kids. Or mediating what movie to watch because Claudia *needs* Moana but Logan wants Cars and Lucas just wants to play a game in quiet.

But, that isn’t the case. Instead, we sit and watch Moana with no squabbling. We try to decide whether we are ready for Claudia to start part time preschool (she is, we are not haha). And how in the world is Lucas getting ready to start 5th grade and going with us to see Spider-man Homecoming this weekend?! Was he even born with the first Iron Man movie came out?!

Radio silence isn’t always bad. Some times it happens because you are so caught up in enjoying the moment and you don’t realize how much time has passed. Some times it is because words escape us and we don’t want anything to be fake or disingenuous. Time is precious, as we have learned the hard way. No one has time to read a post with feigned happiness. To benefit us all, it has to be sincere.

And for now, I believe I can say, it is truly sincere ❀

Happy 5th Birthday Logan Boy ❀ We miss you terribly. Now and always.


Thank you for reading this far ❀ And now…some updated pictures πŸ™‚

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It is done!!!! …for now πŸ™‚

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In May 2012, we picked strawberries for the first time. A very pregnant Tia was taking the photo. Every year, the tradition of strawberry picking stands.

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This is from a special project by Lost and Found ❀ Claudia was a little over 2 years old

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Meet our newest family members! Max and Belle

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My gift from Brett this year were these beautiful pictures

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Lucas-10 and Claudia-3

Life in the midst of the storm

After every storm, there is a rainbow. Something beautiful and full of light has appeared in the midst of the darkness and clouds, providing a counterbalance of color, energy and hope. Ours just has some (very unexpected) pink mixed in ❀

Ruth-Collage

So the news is out…and we are still adjusting to the news after many weeks. We had the CVS (chorionic villus sampling) done as early as we were allowed. It took almost a month to find out the results. Ready?!

Miss Baby Ruth is a carrier, but unaffected by SMA. ❀

She is also extremely unexpected. How unexpected? She managed to make her way through two methods of birth control…yeah… We did not plan for more children. We didn’t really want more children. After dealing with SMA, the risk was too big, too scary. The pain from Logan not being in our arms, too great.

After the initial news, I can honestly say I have never experienced so much anger in my life. I don’t think I can convey how much crying happened, how much questioning of why did this happen. “Does Logan think I’m replacing him? Will others think I am replacing him? I don’t want another baby, I just want my Logan back.”

We had the CVS done and it was the first time I actually saw the baby move. I took turns staring at the monitor, at this baby I had not idea how to accept and my phone’s background photo of Lucas and Logan smiling. In those moments, I came to terms that this was happening. Just like Logan’s SMA diagnosis, I couldn’t change this. The only thing I could do was change how I looked and dealt with the situation.

While I am not angry anymore, its still a mental struggle to accept that this is our new journey in life. Knowing we are having a healthy baby doesn’t erase the pain of my Logan baby not being in my arms. It does, however, give me hope that this rainbow baby will restore hope and positive energy; not only for myself, but also for Brett and Lucas.

The excitement is growing in our house. The influx of pink and purple have been welcomed with open arms, especially by Lucas. It is a fresh start. Not a do over, but definitely a sort of starting over. We have nothing for a girl and not even sure how we are going to handle a girl after two boys! It gives us even more fire to find a treatment/cure for SMA so when she grows up (just like Lucas), she will not have to worry about being a carrier.

Three things we do know: She is loved beyond all else, has two very protective big brothers and a beautiful guardian angel watching over her. Just like he is with all of us. πŸ™‚

What a week

This week is full of so much meaning. Unlike some expecting parents who go into labor and rush to the hospital, we knew when Logan was coming. And it all started the Tuesday before the 4th of July. It was our 37/38 week appointment and we were scheduled for our last ultrasound. Doc came in and told me I had borderline low fluid, but it wasn’t low enough to take me in right then. We were told to enjoy our holiday and they would see us at 7am on Friday! Enjoy our holiday…I could barely breathe! Friday we were having a baby! We had two days to prepare (even though everything was mostly done)!

The 4th was good, despite the drought and nervousness of setting off fireworks. The 5th was a great day with Lucas. We went to our local Discovery Center, bought him a big dinosaur lego set to build while we were gone, and I made one last trip to L&D because Logan had stopped moving again. Little did we know that was the SMA in play and he was conserving energy for the big day.

So here we are once again, on the Tuesday before the 4th (Tuesday sticks out because its the only day our office does ultrasounds). Last year I was so scared. Logan wasn’t exactly planned and I had no idea how I was going to handle a 5 year old going into Kindergarten and a new baby that I would have to chase around. Little did I know there wouldn’t be any chasing, or birthday party planning. I had no idea that we would experience a love greater than we had ever known, that would redefine us completely.

Words cannot express how much we miss Logan. I am now scared of living 50 years without my baby. Although my passion in finding a cure tends to outdo my fear. I think I say this every post, but sometimes I need a reminder :). We promised him we would fight for him. And fight we will, so no other child or family ever has to feel the devastation caused by SMA.

As you celebrate the 4th, with the beautiful wonders of red, white and blue…be sure to add a splash of green in the days afterward! Happy Independence Day!

❀ Smile on friends…Smile on ❀
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Time Marches On…

I’ve said this before, but it truly is interesting how time has changed for us. It feels like a lifetime since we last saw Logan’s beautiful face and yet only yesterday at the same time.

This past week has been especially hard. There wasn’t any particular reason, no milestone per say. Yet, it was the slowest week of our lives. Saturday I took Lucas blueberry picking at a local farm. It has become a summer tradition for us. While we were away, Brett took down the crib.

Sound asleep <3

First night in the crib!!!
First night in the crib!!!

We were so excited when we finally had room for the crib! Logan had his own “permanent” bed. We have been talking about taking it down the past week or two, so I knew it was coming. It still was unnatural to see an empty space where it once was. We rearranged the bedroom so the empty spot isn’t so noticeable. My glider next to the window will not move though. Many times Logan and I sat looking at the trees and birds eating their seed.

For any who have grieved, they know it is a roller-coaster. Unfortunately, its not a fun one. Some days are better than others. There are days filled with smiles, laughter and truly feeling happy. Then there are days filled with smiles, laughter and feeling guilty for having a good day. And of course you can’t forget to mention the zombie days where you barely function and wonder why the sun is even shining on such a crappy day.

But regardless of feelings, time marches on. It does so with or without you . We found that to be true while Logan was with us. We tried to do lots things with him and create many memories to keep us company for a lifetime. The race to make the most of our time was on. Over the past 6 weeks, I’ve come to realize that the race is still on. Its just taken a slightly different form. Lucas is with us. Brett and I have each other. We still have to make our days count because life is fleeting, even for us.

Grieving is a process. A life long process. It involves every spectrum of emotion on any given day. As much as I would like to rewind and stop time. Or possibly speed it up a bit
nowadays, it doesn’t work like that. So once again we are faced with a choice: to be sad and wallow in sorrow day in and day out. Or try our best to get up, face the day and decide to make a difference in this world. (Some days, I do choose option 1…)

What would Logan choose? I think Logan would choose happiness. In fact, I know he would.

<3 Logan's Last Smile <3

❀ Logan’s Last Smile ❀

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