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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Lucas-10 and Claudia-3

Birthday Weekend!

We decided to make Logan’s birthday an entire weekend affair. Saturday we went by Sonic for Lunch then to Sequiota Park. We walked along the pond and watched Lucas tackle the large slide and fireman pole. Then we were off to Ozark to pick up his cake. We were excited to see Stacey! We haven’t seen her since right before we went on lockdown in December. It was such a beautiful day!!!

Brett then text me and said a friend had given him a gift card for Zio’s. We thought it would be a nice treat so we made reservations for an early dinner. Apparently everyone had the same idea!! However, our waitress was incredibly nice and set us apart from everyone else.

Logan started to get fussy in the car, but I thought is was just because he was tired. We still aren’t sure what happened, but Logan threw up all over me around 6:30pm. He turned pale and cold, so we wrapped him up. He was much happier afterwards though and was all smiles before bed time. It was weird.

He started having a rough time around 3am and we put him on .5 liter of oxygen. It was a tough decision, but he was much happier after he was on it. He didn’t go back to sleep until past 4 am.

Because of the small mishap after dinner on Saturday, we had to wait for cake. But the boys didn’t mind birthday cake first for breakfast Sunday morning. Logan then took a 3 hour nap and when he woke up we were off to our local zoo! Logan took his first train ride and loved it!!! He also fed the giraffes their crackers and saw many animals. It was a wonderful birthday weekend 🙂

Photo bomb time!

Good Morning :)

Good Morning 🙂

Birthday Balloons!

Birthday Balloons!

Rockin' the "Logan" onesie!

Rockin’ the “Logan” onesie!

Car ride time!! Off to the park and to get cake!

Car ride time!! Off to the park and to get cake!

Logan's Awesome Cake!!!

Logan’s Awesome Cake!!!

A purple heart for Brooklyn <3 She passed 4 weeks ago today

A purple heart for Brooklyn

Good cake Ms Stacey!

Good cake Ms Stacey!

First train ride! <3 Chugga Chugga Choo Choo!

First train ride! Plus wearing his awesome new out fit he got for his birthday ❤

Mostly Good News Post!

Ready for some good news? Yeah me too because it is about freaking time 🙂

We were able to get in quickly at STL Children’s Hospital to start moving forward with getting Logan a g-tube (or something similar). Logan will have an upper GI (and hopefully cooperate by drinking a bit of barium) Wednesday morning, then around lunch we will meet with the surgeon. We have verified the surgeon has worked on SMA babies before. However, the anesthesiologist will one of the (if not the) most important members of the team. I am calling Monday to schedule a pre-surgery appointment. Fingers crossed we are able to do a Wednesday appointment. Dr. Rosenbaum emailed me earlier with some contact information. I am comforted that we have such great doctors staffed looking out for our best interest.

The final total on our Park Lane Jewelry fundraiser is in…Drum roll please… :)It raised $400 in 7 days!!! Thank you to everyone!!! If you wanted to participate but didn’t get a chance, there is another chance this week. Another show is open until Jan 23rd. You can visit here for all the details: https://www.facebook.com/events/427219154015991/

Logan was having a rough few days/nights. Last night was ok, but the two nights before that were the roughest we have had. He woke every 45min-1hr. I’d be surprised if Brett and I slept 6 hours in 48 hours. We did have him checked and the good news is he does not have an ear infection like we thought! Bad news is we don’t know what is wrong. Our assumption is he is uncomfortable. He can’t move himself, he can’t stretch. We are wondering if his hips are hurting because of the pressure on them. We are looking at getting a special memory type mattress for him within the next week.

This afternoon we did a follow-up interview with KSPR Channel 33, Springfield Mo. It will air tomorrow (20th). There will be a small segment at 5pm with the full interview at 10pm. We will post the link when available for everyone out of the area. Lauren asked some great question concerning our STL trip from last week and the one in the coming week. Logan napped the entire time. He woke up right at the end and gave Lauren a great smile. He really like the big camera Gregory was carrying around. Once he saw it he would not take his eyes off of it. It was windy out today and I saw Lucas flying his kite with my mother in law. We went out to see if Logan could fly it for the camera and I kid you not the wind died. 😦 So no marking off flying a kite on the bucket list. Maybe tomorrow will be windy and we can try again.

Logan has some bucket list adventures coming up soon and we are so excited!!! MO Pro Farms from Republic is setting us up with lettuce seeds and everything we need to grow them. They are fast growing so Logan will get to see their progress. Candace with Blew Photography is coming to do Logan’s six month pictures (fingers crossed she hasn’t come into contact with the flu!!!) before we go to STL. I am going to have several shots done with a bare tummy in case the surgery comes soon than we expect. And the adventure I am most excited about… Melinda with Dickerson Park Zoo is allowing us to go behind the scenes and Logan is going to feed the giraffes!!!! EEEEKKK!!! We picked up Lucas and went to the zoo the day after we got back from STL and I told Brett I hoped Logan would be strong enough come March to feed them because we look forward to that every zoo trip. And now he will get to have that chance!!!

And now for some new pictures 🙂

This is Logan's "Hi Mommy/Daddy. I'm awake!" look :)

This is Logan’s “Hi Mommy/Daddy. I’m awake!” look 🙂

This is the reading off of Logan's pulse ox from last night (18th). His oxygen saturation was at 100!!! He was resting good.

This is the reading off of Logan’s pulse ox from last night (18th). His oxygen saturation was at 100!!! He was resting good.

I got this idea from a friend :) Feeling different textures.Logan is touching dry rotini noodles. His face says it all. I love his expressions!

I got this idea from a friend 🙂 Feeling different textures.
Logan is touching dry rotini noodles. His face says it all. I love his expressions!

Boys were watching Bee Movie. Logan kept cooing when there were many bees flying across the screen lol

Boys were watching Bee Movie. Logan kept cooing when there were many bees flying across the screen lol

This is from a free drawing app on my phone. This Logan's first drawing! :D

This is from a free drawing app on my phone. This Logan’s first drawing! 😀

Logan’s 6th Month Birthday!

Logan had a wonderful six month birthday today. The morning and early afternoon was very relaxed. Later afternoon is when we started decorating. I honestly don’t know how Party City makes any money. We bought his decorations for 50% off! They were so cheap! Logan stayed awake and happy through the entire party, which was about 2 hours. He normally only stays away for an 1.5 hours between naps during the day. He didn’t get very cranky until the end when we knew it was bedtime.

Some highlights from the party was the awesome cake from Stacey’s Sweets in Ozark, MO. She is such a talented baker and designer. The cake was based off of my baby shower cake only in reverse colors (the original cake was pale green with a pale blue dinosaur). We were going to do it for his 1st birthday, but since we aren’t sure that will come, we wanted to make sure we greatly celebrated this milestone.

We also set off some fireworks we had left over from the 4th of July. It was so hot then we were concerned about them setting a fire. We lit several roman candles, which Logan absolutely loved! There was one parachute for Lucas that got stuck on the roof. And the finale firework was large and gorgeous, but made a big boom each time it went off. Logan did not like the big booms and started crying, but as soon as I turned him away and faced him towards the house where he could see the reflection of the light, he was fine.

He got some cool new books and a new red feather since he was getting a little tattered.

We had a wonderful time celebrating.  We also want to thank everyone who celebrated with us by wearing green!!! It was so awesome seeing your pictures and comments 🙂 I did not cry much today, but when I did it was happy tears. I was just so overwhelmed by everyone’s kindness.

It is hard to believe our baby boy is six months old. Time flies way too fast.  We love you Logan!!! Hope you enjoyed your birthday!

Merry Christmas Eve!

Today has been another day full of ups and downs. The ups included making special reindeer food, putting cookies out for Santa, and each of us opening one present from under the tree. Lucas gave Logan a cool dinosaur shirt. Lucas opened his Lego Ideas Book (if your child is into building, this is an excellent book!). Brett gave me a Pandora charm for my bracelet, It is a red/ruby heart symbolizing Logan. It is beautiful. Brett is a hard one to buy for, so the boys made handprint/footprint paintings for him 🙂

We were honored to have Lauren and Brandon from KSPR News 33 come and interview us about Logan for their Christmas Eve story. I hope I don’t look too much like a deer in headlights lol. But we are truly honored we were able to share our story with more people and spread awareness about SMA while Logan is still with us. Here is the link! http://www.kspr.com/news/kspr-ozark-family-celebrates-sons-first-and-last-christmas-20121224,0,1031087.story

***Update/Edit: We just watched the interview and they did an excellent job considering the topic. We are so grateful for the beautiful piece they ran. They even aired it at the beginning before the gas and milk prices! 😉

This wasn’t aired , but I forgot to mention the best part of the interview is when Lauren heard Lucas call Logan “squishy”. She asked him why that was Logan’s nickname and he replied while pinching his cheek “because he is squishy!” LOL It was that simple haha.***

This evening has been rough. I am a huge Christmas fanatic. I am that person who starts decorating before Halloween is over :). But tonight I asked “When in the world did Christmas get here?!” We have been preparing for it for quite a while but now that it is Christmas Eve, it feels like it has sneaked up on me. I actually said I wish it wasn’t Christmas. However, Brett reminded me it is better that it is Christmas tomorrow and we get to spend the whole day with our two boys than for it not to be and we not have this opportunity again. Once again, the hubby is right :).

So as I type tonight, I realize that we are so extremely fortunate to still have Logan with us to celebrate. And in two weeks he will be six months old and we will celebrate again!

We wish you and your family a very Merry Christmas. Remember to hold your loved ones a little tighter and really think about what you will remember from Christmas day this time next year. Take as many pictures and videos as you can. Cherish every moment.
Love and Best Wishes from all of us in the Ruth Family ❤

Bucket List Adventures!

We have had many adventures the past few days! We have a facebook page now!!! You can like us at www.facebook.com/LoganRuthSMA.

Thursday was his five month birthday 😀 We had a little party with the four of us and my in laws. Dinner was pretty tasty and the cupcakes from Stacey’s Sweets were incredible!

On Friday, we completed the handprint/footprint portion of our frame. Now all we need is a portrait sized picture to complete it! We also watch How the Grinch Stole Christmas (original version) and Horton Hears a Who. Logan enjoyed them both 🙂

Saturday we had our first haircut with Darlene! She cut Lucas’ hair for the first time as well! Logan did such a great job 😀 He didn’t cry. In fact, he smiled often during it. Plus we were able to get a little bit of hair off of him for our Ziploc baggy. So proud of our little little man!

Today was wonderful as well. We met Carrie early this morning at Elfindale to have our family picture taken. The ladies at Elfindale Bed and Breakfast were so incredibly nice! They allowed us to take pictures all over the place including clean, empty rooms. The entire place was decorated for Christmas. It was beautiful! I am so excited and anxious to see how our pictures turned out. All I wanted was one of all four of us lol. With as many times as her camera clicked, we surely have one of all of us looking at the camera 🙂

We also told Lucas this afternoon about the severity of Logan’s condition. But that is for a different post.

I am hoping tonight we can do some more ornaments! And also get all the paper work for what seems to be a billion different places.

Logan's cupcake!

Logan’s cupcake!

Stacey did a fantastic job on Logan's cupcake!!!

Stacey did a fantastic job on Logan’s cupcake!!!

Getting the cape on

He likes the cape! He likes the cape!

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Sunday Funday!

Lucas made off like a bandit with his family party!!! I am pretty sure we will have to buy a few more containers to hold all the new Legos he received. His bumblebee cake from Stacey’s Sweets in Ozark was amazing!!! Love her!

After the party, we told our close family. It was hard but it went a lot better than we expected. There were tears but we all managed not to sob.It does feel like a weight has lifted now that most everyone knows. We are still waiting to tell Lucas. Hopefully Wednesday we will gain more insight on the right way to handle this with him. We don’t want him to be scared but we do want him to be able to cherish this time as much as possible.

After everyone left, Brett, myself, Lucas, Logan, MawMaw and Papa all went to Silver Dollar City! We kept Logan mostly in his seat/stroller directly away from people. We did bring him out to see the giant Christmas tree light up and watch the parade go by. He didn’t cry at all during the parade and loved the lights passing by. There were thousands of people there though. It was a beautiful 70 degrees. Who would have thought…70 degrees in Missouri during December!

I somewhat lost it during the parade. I am so glad I was turned away from Lucas and he was mystified with the parade. However, I couldn’t stop the tears from streaming down my face. Silver Dollar City is one of my most favorite places to be and especially during Christmas. I am so fortunate that I was able to spend it with my family and that my sons could experience all the wonder and excitement just like I did when I was little.

All in all, we had a great day celebrating not only Lucas’ birthday but also Brett’s! And our trip to SDC 🙂