Friday, August 27, 2010

Sisterly Love

Last night we had Ariel come for the last time this summer....sniff sniff... she has been the best this summer. She was Lily's hab and respite provider and the best babysitter for the other two. She asked (yes asked) us to work one more night before heading back up to NAU for her sophmore year. She came and while I was doing my chicken dance running around getting dinner for all the kids ready so Andrew and I could go on a "date" (we had to go shopping for stuff for the kids), Andi asks me to write down what I like about Lily. I write her sweetness real quick and don't even think another thought about it. Well come this morning while feeding Lily and Oliver I look over at the donation box from the fundraiser and I look in it and I see a note Ariel wrote about Lily, my note and a note from Andi saying I love my sissy.
She made a box of things we love about Lily, melted my heart. Sure she is fiesty and her and I will probaby fight until the day I die, but her heart is so tender and I just adore that she is our daughter.

Wednesday, August 25, 2010

We Splashed for a Cure!

Wow! What a weekend!
Andrew and I had a little “staycation” in Scottsdale Friday night, our anniversary was Wednesday August 18th and Grandma Cheryl was here in town to help out with Splash for a Cure. We took advantage of her to watch the kids and advantage of the awesome rates you can get at 5 star hotels because who wants to be in Arizona in August. And we had dinner and a night out on the town. No curfew, although we were in bed by 10pm. No one waking us up, except for we were both awake by 6:30am. But we had no one to feed but ourselves. And that was awesome.
Then Andrew dropped me off at a spa where I met up with my mom, sister, niece, aunt and cousin to where we had massages, facials and swim time. I thought the last thing I should do before Splash for a Cure was relax, but it surprising went well. Those ladies were on my committee so we talked a lot and planned a lot and relaxed a lot.
However when I got home, I got to work. And so did my amazing team of women who none of it would have been possible with out! Jennifer Cavanaugh, Nancy Diepstraten, Gloria Mason, Kim Dimas, Liz Beisemeyer, Ashley Galvanoni were my core team. I also had help from my nieces, my nephew, my cousins, all the other half of the women, plus a few friends went far and beyond getting me amazing raffle prizes. It practically went flawlessly. There are things that I am kicking my butt over but there is nothing I can do but just not do it next year (and yes there will be a next year!).
A little rundown for those unable to attend:
We get there at 5:10pm and they let us in to set up, event starts at 5:30pm and we did not have enough time. But those who showed early were patient and some even pitched in a hand.
Rick from Tom’s BBQ came alone and brought enough food for 200 people! He donated it all, his time, his food all for free! We got about 100 hotdogs to give to the kids and we were totally out of food at the end of the night. Since Rick came alone Andrew served food with him all night long. I was proud of him doing what he had to do to help out. And hopefully if the construction field crashes here even more than now, at least we know he has something to fall back on.
Everyone was swimming and chatting, it was probably about as hot and humid as AZ can ever get and I felt bad for those who did not want to swim and will next year see if we could do it in September. The raffle prizes were awesome and I had my niece Skylar and her friends out selling raffle tickets, Ashley and my mom working the raffle tables sweating their tails off. We sold a lot of raffles and every single item had raffle tickets in it. Some more than others, but all in all those were some pretty coveted items!
Then we sang happy birthday to the beautiful birthday girl and we had cupcakes made for everyone (Jenn, Gloria and I all made several dozen). Then we drew for the raffle and it was over.
And I kept thinking once this is over I’ll never want to do this again, just like after running a half marathon, I did that once and I pretty much stuck to that whole never doing that again, but when this was over I felt high. It was this overwhelming sense of accomplishment. We made, I don’t have a complete tally yet, but over $4,000!
Andrew’s parents did a fundraiser in South Dakota during Sturgis Bike Week and they rose over $6,000 so our team Lily will be contributing over $10,000 to IFCR (international foundation for CDKL5 research)!
And now we just know we can do more and can do better.
We are just so proud to be Lily’s parents and to have a name of something that we can beat if we really try. There is a cure out there, we just have to have enough money to get there to be interest in finding it. Sad but true. So we will keep going for Lily, for all the kids like Lily. We will fight until we find the cure and appreciate everyone willing to put up their gloves and fight with us. (or your pocketbooks, that works too)
I will be posting a video soon with the photos from the event. I’ve got one hour left of the boys nap so I will get on that right now!

Friday, August 20, 2010

2 Days

2 days until the big day! The day I have been stressing out about for the last 2 months! I am excited, nervous and well freaking out. I am sooooo not a party planner, I am not someone who asks for anything. This is every bit out of my comfort zone, yet I'm amazed at how well it is going so far. There are a few things that I am really nervous about, but in my experience in life the things I get worried about and stress about always end up never as bad as I imagine. So let's pray that is the case. I have the most amazing team of women who have helped me along the way from planning, to making, to doing. I am blessed to have the people in my life who help others because they want to. Thank you ladies and thank you to those who sent my email out and had friends send it out. The raffles items are amazing and I could have never asked for a cooler group of family and friends.
I am asking those who plan on attending to pre purchase tickets at http://splashforacure.blogspot.com and for those who cannot make it, please pray for a smooth running, succesful event.
I will update on Monday!

Tuesday, August 17, 2010

Muddeling Through...

Last night was the viewing and today the memorial service. I don't even know what to say, this gal is speechless.
I've been to funerals, I've even been to a child's funeral (2 in fact), but I never knew the child, or the parents like I know this family.
Andrew was very hesitant to join me last night and I had to remind him, no one likes this. No one ever wants to attend a funeral. But it is for those left behind that we need to be of support to.
We went. It was extremely hard to see that gorgeous precious girl there, lying there. A little girl that was just a couple weeks ago on vacation with her family.
Today at the memorial the parents stood up and spoke and I have no idea how, but it was the most beautiful thing I had ever witnessed and they shared tender moments they had and just what loving that special girl was like and I was sobbing. Almost to the ugly cry which no one wants to see. And I think about how much I hurt for them and it is nothing, NOTHING compared to the hurt, the loss, they are feeling.
I don't know what to say. I don't feel at liberty to go on about something that is not mine to share.
I am just heartbroke for this loss and want to do whatever I can to be of a comfort and it is those moments that you don't know what to do that leaves you standing there spinning in the wind.
What I do know is that Emmie was a precious girl that lived here on earth for such a short time, but the lessons she taught will stay with us for a lifetime.
Emmie Rae Check, your spirit will live on. Enjoy running, playing, singing and dancing now the way you always should have, we selfishly would have rather you stayed, but now you are free.
We love you and will always miss you.

I am praying for comfort every night for them and it feels like that is all I can do.

Friday, August 13, 2010

Grief

It is with a heavy, heavy heart I say that beautiful Emmie is no longer with us, but is with our Lord and Savior dancing, singing and playing like her earthly body never allowed her to do. But even knowing where she is now, free, I still feel so much sorrow for my friend. For Emmie's entire tight knit family and for our family of special needs moms that we have become over these past 5 years. I don't know if I have ever felt a crush like this. It's something we all fear and something we all carry in the back of our minds, but for it to become a reality, to one of US? It is unbelievable. Simply unreal.

I remember so clearly walking Lily into prek for the first day 5 years ago into Mrs. Jean's class and I see on the floor this gorgeous girl I had never seen before. She had two side buns and gorgeous jewelry, cute top and this beautiful satin long blue skirt and I said, "I need to meet her mom, I know we will get along!" And we did. Tiffany and I bonded from the start. The prek the kids went to was at Foundation for Blind Children and not only were they amazing to our kids, they were amazing to us facilitating meetings for us moms, support group meetings. It was there we laughed, we cried, we learned. We all created a bond that can only be made by people with a unique common tie. We all came from different walks of life, religions, traditions, but we all loved and adored our special kids and that was the bond we made and we all loved each others kids as our own.

Birthday parties, Mom's night outs, and the best, game nights! We all stayed in touch even when our kiddos moved on into the big bad world of public schools. We weren't seeing each other as often, but that bond is still there. And the news of our dear sweet Emmie has rocked us all to our core.

Emmie, Emmie, Emmie....You will live on in our hearts forever. You are set free from a body that you had to fight every day.
We adore you, love you and miss you so much tremendously. Keep over your mama, daddy, little sisters and soon to come baby brother, they will need to know you are around.
Here are some fun memories I wanted to share:













Tuesday, August 10, 2010

What I Feared...

Lily classmate who passed was a little girl with Rett Syndrome. I met her the first day of school and she was as cute as a bug. Even gave me a little wave when I came up to her to tell her hello and welcomed her to school. She was in a wheelchair and I was saying how excited I was that Lily finally had a little girl friend in a wheelchair too. Any loss is devistating, but this hits so close to home. So close. Too close. I just feel so bad for the family, I told the teacher I wanted to meet mom and chat with her. See if we could, you know, trade notes. Dr's, therapists, etc. Just so sad.
Our little friend is still in PICU and we are still praying. She is off the vent, but still has a way to go. Keep her in your prayers please, little Emmie. We just love her and her family so much, we want to see her come through this and be Lily's BFF again.

Sunday, August 8, 2010

When it rains it pours

When it rains it pours, right? I wish I were speaking literally, but it’s Arizona, so I don’t even know if that is true.
I saw a note in Lily’s backpack on Friday morning, I saw it Thursday but I thought it was something about the bus and we had a date night that night so I ignored the letter until Friday morning. Then I read the letter. Apparently a classmate of Lily passed away. A littler kindergartener girl, no name was given, but Lily’s class is small, I am pretty sure I know who it was. That was such devastating news. It is a devastating life to have a child who looses classmates and it isn’t a huge shock. It is a devastating life never knowing what your child’s future will be. One day healthy the next gone. I spend so much time thinking what would I do? How would I deal? What if? I don’t want to think like that, but it is impossible to not when you have the fact thrown in your face. Devastating.
Then yesterday I got a call from a dear special needs mom friend of mine that her little girl had to be air evaced and was not doing well at the hospital. I was just in tears as I felt her pain. Her fear. I am not sure how she is doing right now, but I’ve been praying and praying and asking others to pray. I just want her to be ok. I want everything to be ok.
I want the world to be ok and every child in it to be as well. But I suppose people in hell want ice water right?
It has just been a crap couple of weeks and when I think maybe it will get better, it doesn’t. It manages to get worse. I posted on Facebook yesterday, ‘I get it Peter Pan, I get it” and I do. Why would anyone in their right mind want to be a grown up? There is nothing good or fun about it. All I can do is remind myself that childhood is and should be fun and for my kids, I will make that so it is true.

Friday, August 6, 2010

Mama hates the crazy

I haven’t been posting lately and it isn’t you it’s me. Things haven’t been normal around here and I’m not asking much for our normal. But it is over the top crazy and mama ain’t handling the crazy too well.
Just the other day I pick up an automatic dog water thing. Good idea, it is 110 + right now. I get home and fill it and water spills everywhere. I try a different approach, water spills everywhere. I try again. I finally give up and wait for Andrew to come home. I explain what is happening and he looks at it, looks at me and asks “did you read the instructions?” “Nope’ I say. “Did you even look at the picture on this thing?” “Nope”
He then shows me the picture on the automatic dog FOOD feeder.
Sigh.
I’m posting after getting to experience the men’s bathroom at the mall thanks to a super fast 18 month old.
Calgon?
I will be posting again and often, but I’m guessing it will September…..2020

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