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 🙂 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 🙂 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!!!! 😀 Oh! And I almost forgot about our newest family members… *see below 😀

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.  “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 🙂

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It is done!!!! …for now 🙂

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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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“Time does not pass, it continues”

It’s been three years. How has it been three years?

This last year has been a year of healing for me it seems. I’ve adjusted a bit more to Lucas growing older, smarter and continuing to be a great big brother. Being super involved in PTA at school has been a great distraction, along with more playdates with Claudia (especially Friday lunch/grocery shopping trips with a cookie).

I’ve slowly come to terms with my high anxiety and (at times) severe depression. I’ve always had a tendency towards them both, but the grief and stress exacerbated the conditions. Gradually, I’m seeing I am not invincible. I’m human, and that’s ok.

In the process of coming to terms with everything, joy has started to seep back in. On May 1st, we took a spontaneous trip to Branson. It was very similar to our last trip we took with Logan. Lunch at the Branson Landing, fun at the Fish Hatchery and visiting the shore of Table Rock Lake to throw some rocks. It was Claudia’s first time being able to participate at the Fish Hatchery and she loved it. The fish were fascinating to her as they splashed, fighting for the food she was throwing. I was reminded of the beautiful sunny day with Logan and throwing food to the fish. So much joy was had that day 3 years ago, and I felt the same joy once again. Something I never thought was possible.

Grief has taken a turn from anger to apologetic. Maybe they are one in the same though. It’s a crazy roller coaster ride. Grief never ends; it just changes. Not a sign of weakness, but rather the price of true, pure love.

My Logan,

I’m sorry you got the short end of the stick in life. I’m sorry you never felt the sensation of rolling, crawling, walking, running or climbing. I’m sorry you won’t see your 4th birthday this year. It was my favorite year with your brother Lucas. He really enjoyed going out and doing things. Plus, he was tall enough to ride some of the rides at Silver Dollar City! I was really looking forward to pictures of you and Lucas on the small roller coaster or the tea cups. I’m sorry you never met the orneriness known as Claudia. We probably would have had to have two TV’s set up for you two to get along. Daniel Tiger and Little Einstein’s going 24/7. For as snugly and cuddly as you were, Claudia is strong and independent.
What was given to you was an injustice. It’s not fair. To any of us. Its infuriating, heart breaking and devastating. However, you handled it all with grace, laughter, and tenacity. The muscle weakness didn’t stop your smile. It didn’t stop your love for Little Einstein’s or trains. It didn’t stop you from holding my hand during the happy times or the most trying and difficult times. Spinal Muscular Atrophy didn’t define you. Even though you were so young, so underserving of this condition, it never stopped you from loving life.

And with your joyful spirit on my mind, I too will never stop: Loving you. Missing you. Fighting for you.

 

Until we meet again…

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When 2 years feels like forever…

Two years ago this morning, our beautiful Logan boy took his last breath and peacefully left this world.

Facebook has a relatively new feature called “On This Day”.  Most days I find it interesting and even entertaining. This past week has been hard seeing the memories and I was really dreading today’s update. However, I was astonished. There were so many comments, pictures and shares in my memory thread of those comforting us in our time of great loss. To be reminded of how many lives Logan touched was so uplifting.

Two years brings a lot of changes. Lucas growing older, Claudia being born and celebrating her first birthday (not to mention all the milestones we were unable to celebrate the same way with Logan), and learning how to balance in life in the aftermath of loss. I feel we are in a very awkward phase of grieving. I know, awkward is not necessarily a word that comes to mind when discussing death, but I feel it is the only appropriate term to describe this phase.  My heart still hurts on a daily basis, but I am starting to see more happiness than sadness. I’m becoming more involved in Lucas’ school and figuring out play dates for Claudia. These events take precedent on a daily basis and some days that is hard. Some days I feel like I’m failing Logan for not growing his foundation more and in reality having to reign it in some.

Today has reminded me of how much an impact Logan has had. The impact he made on us and this world is more than we could ever imagine.  He accomplished something in his life that I may never do, and that’s ok. This was one of his mission’s and he carried it out successfully.

There will forever be a Logan shaped hole in our hearts. For every smile, there will be a tear as our hearts ache he is not physically here to enjoy every moment with us. However, the memories we have and will share with Claudia help keep a piece of him with us.

As you carry on with your day, be sure to reach out and say hi to an old friend you haven’t seen in a long time. Give a friendly smile to the barista that looks stressed out from doing 10 coffee orders at one time. Give your kids/spouse an extra hug. Let people know how much they mean to you today.

Best wishes,

Tia

*For updates on us and the foundation, check out the blog posted last night*

Photo bomb time 🙂

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Rediscovering Ourselves

Two years ago, I had no idea in a few short hours our baby boy would leave this world and a “Logan shaped hole” would be left in his place. Life has been a crazy rollercoaster the past 2 years. However, I wanted to give an update on everything.

Lucas is now 8 and so incredibly intelligent, it’s scary. He absorbs information like a sponge and loves learning. We still have tough days where Logan is immensely missed more than normal, but that is to be expected. Death is such a difficult situation to understand as an adult, let alone a child who does not have full reign of their emotions. It really is incredible how resilient children are when they are placed in extremely tough situations.

Claudia is now 14 months. I know, I know…time flies!!! She is running around and being ornery as ever. She is completely opposite of Logan. I’m not kidding…we could not have created a more opposite child if we tried.  She is already trying to problem solve and has great motor skills for being so young. Her spunk and spirit have brought a lot of happiness and hope for tomorrow back to our lives.

There has been a lot of silence since Claudia was born, and I apologize for seemingly falling off the face of the earth. It was truly unintentional. I don’t think I realized how much effort it was going to take to readjust to our new circumstances.

The foundation is still up and running, however we have eliminated almost all events outside of informational events this year. Yes, this sadly includes the 5k/Walk, Run, Roll. Life has thrown me a few curve balls and I’m still learning to balance. With this, there is a lot of guilt. A lot of “should be able to” and “why can’t I” statements. It is very tough to scale back, but I know Logan would want me to make sure Lucas and Claudia are taken care of and thriving above any other tasks.

Our hope is to pick up the pace with Logan’s foundation next year, but I’m taking everything a day at a time. Currently, my two biggest hopes are (1) update the Facebook page/blog more often to keep everyone up to date on the latest breakthroughs in medicine and (2) to do another fundraiser to help raise more books the care packages. We have received so many great comments saying how much they appreciated them for their newly diagnosed little ones.

I almost forgot, today is Mother’s Day! We still celebrate Mother’s Day a week before like we did when Logan was here. But I hope all those reading this, Moms and Single Dad’s, had a wonderful Mother’s Day.

Wishing you all the best,

Tia
Photo bomb time 🙂

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Happy 2nd Birthday Logan!

Dear Logan,

Its hard to believe its been 2 years since you have been born! Where has the time gone? Its been a little over a year since you left us to fly somewhere beyond the moon, but we still think of you everyday. We love you so much and proud of the life you lived while here with us.

We try not to think of the could have been’s or how it would be today. Would you be talking our ear off? Would you be jealous that our laps are half taken by Claudia? I’m sure if it wasn’t for SMA, you would be running around like a maniac and want to be outside all the time. 

Even though you are no longer physically with us, we know your spirit lingers on. Your memory and legacy will never die. So today we celebrate you: your bright smile, sad pout, bubbly personality and fighting spirit. 

We hope you are having fun, flying around and watching from above. We miss you every moment of everyday.

Happy Birthday Little Little Man
❤ Love you Squishy ❤

 

In Memory of Logan – Our 1st Donation!

Excerpt for our blog: November 29th, 2012
Today we received our care package from FSMA (Families of SMA). They are so incredibly generous. There were toys that Logan can play with, a bath pillow to make bath time easier as his muscles weaken more, a bubble blower, a beautiful quilt made by the grandma of Nora (www.goodentree.com) who also has SMA. Several foundations were involved in donating. I told Brett one day when we are able, I would love to contribute to the care package somehow.

When we started on Logan’s journey, there two things we knew we wanted to do: Start a foundation of support for Southwest Missouri and contribute to Families of Spinal Muscular Atrophy care packages for newly diagnosed families. While searching for local support (and finding none sadly), we stumbled upon FSMA’s website. I contacted them the Monday after Thanksgiving and within 3 days, we had a carbed and care package. The care package opened up a whole new world for us and what we could do with Logan. It was very exciting!

This year, with the help of so many people, we were able to accomplish the second half of our dreams. 200 Usborne Touchy Feely Books were delivered to FSMA and placed in the Type I care packages! The Jacob Isaac Rappoport Foundation has been fully funding the Type I Care Package Program since 2009 and we are so honored to contribute to the cause.

Why Touchy Feely Books? Because they were Logan’s favorite past time. It was something the we could all do with him too. Lucas could not quite read yet, but the books were simple enough to read and then describe with his imagination. If Logan was starting to become cranky, we could pull out a “That’s Not My…” book and he would cheer up!

A huge thank you to everyone who made this possible. We could not have reached this goal alone. I am so excited that a small memory of Logan will be delivered in each box and hopefully will bring smiles to those going through this difficult journey.

**To see the post by Families of SMA about our donation, click: http://www.fsma.org/LatestNews/index.cfm?ID=8445&TYPE=1150

Here are a few of our wonderful memories captured while reading these books with our baby boy:
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2013…what a year!

I feel people fall into three categories when it comes to New Year’s. 1. Those who are excited to leave this year behind and have a fresh start in the new. 2. Those who feel neither here nor there. They feel everything happens for a reason and that regardless of how this year went, it helped prepare them for the new. 3. Those who are anxious, sad, and possibly down right terrified to leave this year behind.

I quite possibly fit perfectly into the third group.

2013 has been a wonderful and horrible year all wrapped up in one. On New Years Eve 2012, I was anxious about entering 2013. As we sat in my glider, watching the ball drop on TV along with his sweet sleeping face, I knew there was the very real possibility that it would be Logan’s only New Year’s Celebration and we would not get to leave the year with him. Unfortunately, that became true. In the 4.5 months before that happened, many beautiful and wonderful memories were made.

Our favorites include:
Feeding Giraffes!

I imagine Logan saying "Ah, so you are who they have been telling me about" lol

Flying his first foam airplane then laughing when it crashed

Logan getting ready to fly his first foam airplane :) And...check out the new kicks :)

The countless number of postcards sending love!!!

US Postcards!

Logan’s Prime: 8 Months old
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Hoppy Easter!!!
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STL Train Ride at 9 months old!
Big smiles <3

Our Logan garden stone ❤

The garden stone we did Sunday <3

Our final trip to Branson. It was one of the best trips we ever had with Logan

Hi!

Brotherly love during those last days

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Logan’s last smile ❤
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Countless Balloons sent to Logan from around the World
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After Logan passed, a new chapter in our lives began, whether we were ready or not. The first two weeks without him are a blur when looking back. I never knew you could literally feel nothing. We pushed forward and decided we wanted to keep our word to him in his last moments on earth. We promised we would keep fighting for him. And fight we have!

We started the Logan Ruth SMA Foundation!!! Currently we are the only foundation dedicated to finding a treatment/cure for SMA in Southwest Missouri.

Out of the foundation, many awesome things have happened!
– We hosted our 1st Annual Logan’s 5k for SMA
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-Chick-fil-A graciously allowed us to have a Spirit Night to help raise funds
-Farmer’s Market graciously allowed us to have a booth for 2 Saturdays during August (SMA Awareness Month) to spread awareness
-We had a booth at the Women in Business Shopping Event to help spread awareness
-Our 1st Annual Shopping for a Cure was a huge success on Facebook

Altogether, we raised over $4,000, reached our goal of 200 books donated/sponosred for FSMA’s care packages, and printed 5,000 business cards and brochures to help spread awareness everywhere we go.

And how could we forget…
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Its hard not too. Especially with her using my bladder as a trampoline currently 😉

We have hope that 2014 will redeem the hell that has been 2013. Our rainbow baby will be due not too much longer from now. We are getting the books ready to send out to FSMA and planning the 2nd Annual Logan’s 5k for SMA. An amazing opportunity to speak about Logan and SMA is coming in a few weeks as well!

A huge thank you to everyone who supported us during our best and worst times. Those who donated to help pay medical bills, those who sent messages letting us know they were thinking of us, those who bought Logan shirts to help us spread awareness and those who donated their time, money, and/or energy to help make our events a success..thank you all so much. There truly are not enough words to express our appreciation.

While I am not ready to enter 2014 without our Logan (down right terrified is more like it), there is no choice but to keep moving forward. We miss Logan more than words can explain, but nothing can steal our precious memories of his beautiful smile. 2013 taught me more about life than I ever though I would learn. However, I believe 2014 will be full of more learning opportunities in hopefully in a more positive light. We will be supporting families who feel lost after diagnosis, spreading awareness to those who haven’t heard of SMA and a step closer to finding a treatment and cure!

In the New Year, we challenge you to seize everyday. Make a bucket list, even just a few things you would really like to accomplish in the next 365 days. Try and smile a bit more. Enjoy the air around you. Hug and love on your children, no matter how annoying they may be 🙂 These will be on my list too!

May you have a safe New Year’s Eve and a healthy, joyous, and prosperous New Year.

'Don't cry because it's over, smile because it happened' - Dr Seuss

‘Don’t cry because it’s over, smile because it happened’ – Dr Seuss