Monday, November 30, 2009

Thanks - Giving

This year we reinvented Thanksgiving.

Every year since I was about 5 years old my whole family has traveled to Alabama to spend the holidays with my mom's family. Everyone congregates at my grandparents home and each year our event has gotten bigger. New grandchildren have arrived, new in-laws have arrived and now new great grandchildren have arrived. We are pushing close to 40 people when we all get together. Lots of people to get into my grandparents house! Of course only a few of us stay at the house. Everyone else joins in for lunch and dinner.

Of course this year was different for me.

When we first learned of Carolena's diagnoses one of my first questions was, "can we travel?" The answer was a resounding NO from all the doctors. Ugh. Oh well. We have to do what is best for little C.

When we discovered that C was actually doing so much better on her own then anyone really anticipated, I was getting a little hopeful that we might be able to make the trip.

The answer from all the doctors..."um, are you crazy?...NO."

Well, I had to ask.

So, this year we reinvented Thanksgiving and stayed home.

My mom even stayed with us this year. No small sacrifice for her as she does not like to miss out seeing her parents (and sisters and brothers and nieces and nephews, etc.) Mom and I did something even more unprecedented. She called a local caterer and we had our Thanksgiving dinner made for us. Mama picked up all the food (including a whole turkey) at 2pm on Wednesday. Wow. Nothing like not having to cook. Which, by the way we did not completely escape. Mama still did make 2 pumpkin pies and I did make another whole turkey. Kevin got the turkey from work. Which in actuality turned out well since we brought the turkey with us to his parents house the next day. With all the sadness (me) in the changes we did have lots of new experiences to celebrate. Our good friend Megan and her daughter joined us for Thanksgiving dinner. We got to spend time with Kevin's family this year. And the boys had a blast staying at Kevin's parents house with all the cousins. So, even though our usual changed, the changes were pretty good.

Sunday we all went to get Christmas trees. Yes, I said trees. Plural. The boys got to pick their own small tree for their room this year. Kevin is such a sucker. However, the boys are just so excited to have their own kids tree and honestly me too. I do not have enough room on our one tree to put all our Christmas ornaments...such a lovely problem to have. Kyle lobbied hard to have the tree put in their bedroom. Todd, well, he was not keen on the idea. I guess just like the toothfairy, Todd has a problem with people coming into his room at night when he is sleeping. Quirky to say the least. But he has been telling us lately he is afraid of the dark and monsters in his room...so in all reality I guess not too weird to be freaked out about the thought of some big adult you do not know and cannot see messing around in your bedroom when you are sleeping.

Oh...and hallleluah....Egg Nog milkshakes from Stake-n-Shake. Is there anything more yummy? I had one Saturday and it made me so happy I just had to get one Sunday after we got our trees. If you have not had one yet, you seriously need to get one. Unless of course you just hate eggnog.

And on to Carolena. She is still doing well. Her heart cath did show that she will need to have surgery to correct her pulmonary veins prior to doing her Glen. We were really, really, really hoping the doctors could correct the veins at the same time as doing the Glen so she would only have to do one open heart surgery. However, with the pressures in her heart, lungs and veins right now, doing the two procedures is way too risky. She will have the pulmonary vein surgery on December 9 and if all goes well she will be looking at having her Glen about 3 months later.

Just so you all know, Kevin and I try really hard to put on a brave face. We talk about C and her issues and surgeries very matter of fact. In reality we are terrified. I get so caught up in doing everyday things with being at home, especially when we do not have to see any doctors for a couple weeks that when it all hits me again I am leveled just the same as when I originally found out. I AM grateful that she is where she is and that we are home. But, this does not take away from the fact that C is a sick baby and she needs surgery. She needs the same surgeries as kids just like her who are not doing as well. Kids like her who are still in the hospital. And guess what, she has the same death/survival percents as all those other kids too. In some ways, our life right now is harder. I find myself forgetting to worry (which is actually good) but I also get caught in thinking that our life is normal. Which of course it is not. We struggle and fight and push through and what is on the other side...nothing...there are no guarantees, there is no happy ending, there is no miracle. Only more of the same. THERE IS NO CURE. So, now we gear up for C's first open heart surgery on December 9. It very well could be the last time we get to hold her, kiss her, hear her talk to us, see her smile at us. There are soooo many risks each time she goes on bypass. The surgeon will stop her heart. I am terrified.

4 comments:

Lisa said...

Ashley ~ your last paragraph really hit home for me. I, too, am on that never-ending roller coaster ride that gets scarier with every twist & turn. The brave face gets harder and harder to put on and maintain every day, especially when dealing with people who don't understand the gravity of the situation. All we can do is keep fighting the good fight for our little ones.
It sounds like you and your family had quite the blessed holiday! I will continue to keep you all in my prayers.

angie said...

The idea of the bypass machine is what terrified me the most about Emma's surgeries as well, so I completely understand. I wish I could tell you it gets easier with each time but, honestly it doesn't. You all will be in our thoughts & prayers as you prepare for the surgery next week.

Keysgal@QuietWater said...

My heart aches for little C and you and Kevin. We have been truly blessed so far and my prayer is that she will get through the next surgeries in the same "rock star" fashion. The uncertainly of all this brings excruciating anxiety for all of us. It's hard to be positive and put on that brave face all the time. It's harder yet to be smacked down each time you remember she is a sick baby and not as healthy as she looks. But, you don't have to be brave all the time. We who love you are going to be with you and most especially when you need someone to lean on. Don't forget that. Hugs to you all.

Kristi said...

That's right, Ashley. Just keep being honest with your feeling. You just need to handle everything how you can - and only you know how to do that.

Thanksgiving just wasn't the same without you guys there. I am glad that you did have a good time at home, but you can't make it a habit, OK? ;)

We will be praying for you guys especially hard next week. You and Carolena are mentioned in our prayers so often. We love you all!