Wednesday, January 8, 2014

It has almost been a year.

Sorry I haven't posted anything but legacy events in awhile.  The holidays are supposed to be a time of joy, family & happy memories.  I didn't want to be a "downer" with the updates on how it was all going here on the home-front. The holidays were as good as they could be.  The twins had a fun Halloween, Thanksgiving, Christmas & New Years.  They handled it all really well. They accepted that "Cammy" is having the best of each holiday EVER in heaven. In heaven, there is tons of candy, turkey, big giant presents and really great new years fireworks. They were happy Cameron got to be with Jesus on "Jesus's birthday". It helped to be out of town for Halloween.  I just couldn't face the first Halloween with out him, so being out of town with the family was a good distraction. I had to avoid Thanksgiving and Christmas I put on the brave face and hung in there, for the most part.  It really helped that we got our tree from the Christmas bereavement program. Our friends and family have been so wonderful making this season easier, no pressure, understanding & super supportive.  We really have great friends & family. Dad Cressey was a trooper through it all. He organized all of the holidays & legacy events and did a great job. The Toy drive from Block 15 and the Healthy Look Salon, St. Baldricks events were really great. "The 31 days of Cameron" good deeds & random acts of kindness that our friend Katie Carleski is doing is really great. Burnedette, dedicating all of her training miles, the list goes on & on. It is really great to see so many people come together to help create his legacy. To make the world better. That's all a mom wants her kids to do, or it's a good start anyway. I can't begin to express how thankful I am.   I still struggle with being out at events & social stuff, but my friends "get it" and are wonderful.   Everyone has been really great at my new job and super supportive.  Learning all of the new procedures has been helpful in keeping me from dwelling on things 24hrs a day.  I still see him everywhere, meaning who he would have been. I miss him so much is an understatement. They say the pain of  losing him never goes away, you just learn to live with it. There are just no words to describe it. It is always there, just under the surface, but we try to be positive. Every day I wake up & its one more day with out him, every night when I go to bed its one day closer to seeing him again. We try to make life as normal as possible for the twins. Our 7 year wedding anniversary was on Dec 17th, the day the doctors told us he had 24 hrs to live if we stayed the course. That was when we had to make the decision to try everything in our power to save him. Cameron went on the ECMO lung bypass machine & I became the "Prayer beggar". The prayers worked, they helped, he bounced back several times because of them, is our point of view. That was a hard day to say the least both this year and last year.  We got to have him one more month from that point. We got a month of love, some smiles, to tell him how strong he is & how much we love him. Thanks to the wonderful nurses, doctors & staff, they were so supportive & continue to be, and we are so thankful.  I just can't believe Jan 17th will be a year since the worst day ever & that we have all been doing this & going through this together. It feels like a million years and a blink all at the same time. How do we ever say thank you, to you for all of your love, prayers, support & positive ju-ju.  It is amazing to think of all of the people that have banded together in his honor to love him & honor him and his sweet little life.  How do I ever say thank you enough for helping him to make a beautiful mark on this world.  I think he would be really proud that 8,000+ people came together to be a family here...of support & love for him. He would REALLY like it that other kids & families are being helped.   Thank you soooooo much for everything, all of your love prayers & support! Big giant hugs to you!

Saturday, November 30, 2013

The first family pictures without him. Heartbreaking but must be done. We were lucky to have so much wonderful help!!

We did it...the First Christmas pictures without him, his first Christmas in heaven. Thank you so much Kimberly Webster & Family, Nicole King & family for helping make this tough time easier. The King Family and our family are on the same path. It was sure nice to be surrounded with love during this tough, awkward time. Love you guys!!! ♥
We did it...the First Christmas pictures without him, his first Christmas in heaven. Thank you so much Kimberly Webster & Family, Nicole King & family for helping make this tough time easier. The King Family and our family are on the same path. It was sure nice to be surrounded with love during this tough, awkward time. Love you guys!!!

Monday, November 18, 2013

Exactly a year ago today.

Here is Cameron exactly a year ago today. My great friend "Auntie Mo-Minda" (Melinda)came for a visit and gave him a Mickey Mouse. He loved it. That smile says it all. The 2 month count down started yesterday...ugh. I was able to have lunch today with Rachel, little Collin's mom. Collin is one of Cameron's little friends from Doernbechers that is up in heaven with him too. It was nice to catch up and get some tips on how she & her family are handling this too. Dad, Cressey is working on some toy projects for the Pediatric ICU & other sick kiddos for Christmas, more to come on that Very exciting! I just checked with the PICU the other day and they are in need of "new" comfy sweatpants/t-shirt/ sweatshirts for the families fresh from the ambulance. Sometimes, when they get off of the ambulance they are covered in "something" and have nothing clean to change into until family can get there, to bring them their own clothes. That is a big way to help families during their toughest times. They need size 6 to adult. Just an idea if someone is looking for a way to help out this Christmas holiday season. Donating online to "Sparrow Clubs USA"( for kids in medical crisis listing under "Cameron Merrill's Legacy program" to help out with his Fight Big Bags is an option too. Also, "Candlelighters for kids with Cancer" ( also has a "Cameron Merrill Legacy Program" to do a version of the Fight Big Bags too. Both of these great charities have a tax-id number so the donations are tax deductible!! Thank you so much for all of your love, prayers & support. It is a tough road but I/we seriously couldn't have gotten this far without all of your love & positive juju. Thank you just doesn't seem to cover it. Big hugs to you!

Monday, November 11, 2013

Missing him

I am missing him so much...I found this CD of pictures when I was doing some cleaning and had to show you how seriously cute he is. I miss him so much, it just doesn't seem real he is gone sometimes. I miss that smile and those hugs more than words can say. At least when I look at these pictures that it reminds me that he knew he was so loved & we did the best we could to make sure he had a good childhood. He has the exact personality you see in these pictures. Pure love.

Tuesday, October 22, 2013

Oops! I forgot to post this in September!

The September trip to Doernbecher's Children's Hospital PICU(Pediatric Intensive Care Unit) 2013


It's been hard to get back on here lately to give you an update. Things are pretty crazy around here now. The twins are in Kindergarten now and all of the juggling that goes with that. I would say that's the reason but really, the roller coaster is picking up speed again. The month of October was when all of the hard stuff started & the beginning of the end. It is a whole new kind of hard. There is so much weird stuff/feelings that goes along with all of this, it's amazing. I could go on & on. The good news is, the weird is normal, if that makes any sense. Right up until October, the easier days were getting to be more in a row than the hard ones. Last year, we spent the total holiday season there at Doernbecher's. This year, the truth is, I want to hide from it all, but the twins & Dad need me there and engaged. I may still do some hiding. My guess is February things will start to feel more settled. I finally found a mental "tool" that helped. The twins actually told it to me after one of the grief camps we went to this summer, the Benton Hospice(He wasn't on hospice, but they have a day to help kids with grief). They said, "We are all connected by a thin invisible silvery, sparkly thread. Everyone we love, everyone we care about, we are all connected together by a special thread. So, even in heaven Cammy is still connected to us by that thread." Out of the mouths of the kids, that helped my huge overwhelming panicky feeling of instinct of "Where is my baby, is he ok, where is he?" Feeling that connection to him, the special thread, that he is not just roaming somewhere in heaven. See, this the weird stuff I was talking about. Everyone with degrees & experience agrees I am normal, it just feels so weird to think this way. Another "tool" I learned was that there is so much deep, deep's kind of like if you stare directly at the sun too long, you would probably go blind. If you can make yourself (mentally) take peeks at the pain or "sips" it can be a little more bearable. If I think about how much of him and his lifetime I have lost out on, he's lost out on, I could go bonkers. So, "sipping" the pain & redirecting seems to help. It sounds so weird but it works. I am taking a break on doing a ton of his "Fight Big Bag Legacy" stuff right now, just until we get past January 17th. Then I will be back at it in full force. Some days are just so...ugh. The twins are doing really well, Cressey only had one hard "Cammy" day at school. Keylin is quiet sometimes and just watches the cute little boys and always points out the ones that looked like Cameron. Cressey has pretty much stopped asking if we could go to the baby store to get another baby boy & name it Cameron. Talk of Cameron around our house is never far from the surface. Whenever we do something as a "family" they always talk about how he is doing it(whatever the activity is) with us too, up in heaven bigger & better than we are here on Earth. Dad is doing good, nothing about this is easy, just keeping busy. I think we are all making some progress, it's just slow. Our friends & family did soooooo great in September with all of his Legacy events! Dad is getting a shaving team together for December, St. Baldricks...they fund research to cure childhood cancer. So many great things done in his honor, to make the world a little better, or "Big Better" as Cameron would say. We really helped a lot of people in the PICU(Pediatric Intensive Care Unit)during their toughest times, thanks to you. The "Fight Big Bags" are awesome. 128 pints of blood back into the system from the blood drives!! Each donation save 3 lives! Thank you for helping him to leave a mark on this world!!!! Wow, I wrote another book on here again, oops information overload Thank you for your love, prayers & support! Big giant hugs to you!!