Julie's blog

4 months

It seems impossible that yesterday marked Weston's 4 month Angelversary.  Adam and I miss him so much.  We miss his smiles, his jokes, I even miss him giving me his phenomenal grocery list of things he would see on tv commercials.  The kids miss him too.  They talk about him all of the time and ask why he died.  I didn't realize that even the littlest kids would have so many questions.  Their favorite time for questions is when we are riding in the car.  It definitely makes my heart drop.  

The Mommy Guilt

Over the past few weeks, I have been trying to figure out exactly how I am feeling.  I mean, I am asked 50 times a day how I am and while I always reply "we are ok", I don't find that all that truthful but hey, who wants to hear-well our world fell apart and now we are picking up the pieces trying to blend in with society as best we can.  Then, I finally figured it out last week.  I feel guilty.  Guilty for everything really.  Guilty for Weston being sick to begin with.  I think every mom of a child with any kind of special issue feels guilty.  Then, I feel guilty for the years of tests, procedures, labs, xrays, everything.  I feel guilty for ever telling him everything would be OK because I lied to him.  or did I?  Everything is wonderful and beautiful in Heaven so maybe I didn't exactly lie-but it certainly seems deceitful.  I feel guilty for Weston dying.

July`1`

July holds so many meanings but for Weston, July always meant sickness.  The first July that he was at CHOP was the first time a doctor told us that he wasn't going to survive through the weekend (which happened to be July 4th).  Then, all of the new fellows and residents start in July.  You can hear a collective shudder among all of the experienced hospital moms and dads.  There is a learning curve for everyone but we were fortunate to meet some of the best future doctors in the country.  Weston continued on with this July theme for the past 3 years.  

 Then, there are the many 4th of July's when CHOP staff went above and beyond to make sure Weston got to see the fireworks.  He had some fabulous memories there.  

The Little Prince

It is hard to believe that Weston has been gone for 3 months today.  My heart hurts so much everyday and the pain seems never ending.  While we try so hard to focus on all of the wonderful things Weston brought to this world, the pain of losing him is overwhelming.  You just shouldn't ever have to lose a child.  I get angry sometimes.  Angry at God-angry that he took him and I have to really relive those last weeks and know that he took him to make him whole.  It was simply his time to go to Heaven and his time on earth was done.  We (Adam, myself, the doctors, nurses, etc) had done everything we could.  He had the very best care and was surrounded by love.

3 years and a CHANGE FOR CHOP CHALLENGE

Cheeto Keeton

Yesterday, I downloaded the most heartbreaking app in the history of all apps (Billy L, I hold you responsible because I saw it on your page).  Anyways, with Time Hop, it shows you what FB posts you posted a year ago, two years ago, three years ago, etc.  I knew the 1st was coming.  For those who don't know, 3 years ago today, we took Weston to CHOP.  He had been having these "episodes" for months and no one knew what they were.  He would never have them in front of anyone in the medical profession so no one had any clue, how severe they were.  Until, that is, we video'd him having these episodes and sent them to the PH team at CHOP.  They told us to come up immediately.  And so it began-our journey as an inpatient family of CHOP.  We celebrated every month Weston was in the hospital--because we could.

2 month Angelversary

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It is so hard to believe that 2 months have passed already.  In some ways, it feels like the days have flown by and other days, feel like they drag on for an eternity.  We chose to celebrate each month's Angelversary because after reading thousands of cards from lives touched by Weston, we needed to keep that tradition going.  Adam and I love seeing all of the unique ways people are getting into the spirit of his memory and doing random acts of kindness for others.  

Weston's 2 month Angelversary

I will write a longer post tomorrow about the past

two months but Weston's love for doing things for

others is one of the best things people remember

about him.  Help us honor our sweet boy's entrance

Mother's Day

I struggle with Mother's Day every year. I always felt like the term "Mother's Day" cut out so many women that were much more important to me.  For those who don't know, my biological mother didn't raise me.  That lady died when I was 9 but I didn't really ever live with her.  My grandmother did all of the hard work, taught me about Jesus, cheered me on at sports, taught me to read and write, taught me how to drive, and everything else in between.  I always thought the term "Mother's Day" was a slap in her face.  

Where is the Miracle?

All of these years, I knew God was keeping Weston alive for a bigger purpose.  He could have easily taken him to Heaven the moment he was born.  No one knew how sick he was and he "shouldn't" have survived for those first 9 days without medical intervention.  I mean,hello, we took a baby home from the hospital with the equivalent of half of a working heart!   The first time they told us he probably wouldn't make it was when he was 9 days old-why would God give him 7 and a half more years?  Why would God prepare us so, so, so many times to lose him and then just take him in an instant?  Adam and I have had more end of life conversations with doctors and nurses than any parents ever should have to do.  The first time I signed for Weston's DNR before transplant, I thought I was going to have a heart attack myself.  Why did we go through all of that?

Tomorrow-for Weston's 1 month Angel-versary, do a random act of kindness

I have been thinking for the past few weeks, how we would continue Weston's legacy of sweetness, pranks, and jokes.  He loved making people smile and feel good.  I wanted it to be something that the kids can participate in so that the feel included.  So, on the 23rd of each month we are asking everyone to perform a random act of kindness.  Tag me in picts and/or let me know what you did (if you feel led) because I want to show the kids how much Weston touched the world.  So many people have been touched by his life and I can just imagine how many people that WE can all touch tomorrow, and everyday.  

Here is the facebook event, if you would like to join (you don't have to have fb to participate)

https://www.facebook.com/events/630836480326557/?ref_newsfeed_story_type=regular

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