Tuesday, December 21, 2010

Breakfast with Santa

We had a fabulous week! Our big event was a breakfast put on by an awesome new magazine called Parenting Children with Special Needs. They are linked there. They put out a new edition every two months in the Kansas City area with great stories and resources for people who parent or care for kids with special needs. They have been a fantastic encouragement to us just through the magazine, but this past Saturday we got to meet a bunch of families and people who work for the magazine. It was fantastic! We met a Zona Rosa and got breakfast and Olivia got to sit on Santa's lap. You'll have to bear with me. These pictures are in opposite order from what I wanted, but I'm just too lazy to switch them.

This is Olivia (the second time on Santa's lap), Santa, and the elf is Stephanie, the wonderful woman responsible for starting up the magazine. If you get on the website the first edition is about her son.

Not that it needs any explanation, but this is Olivia the first time seeing Santa--asleep.

The three of us eating breakfast before the big man got there. Olivia, still asleep.

When we first got there. Really excited. Probably also hating the Santa hat.
The breakfast was a great experience for Brian and I. We met several people and just felt comfortable being with other families with children with special needs. In addition to people from the magazine, we also met a woman from a local charity that helps provide mobility devices to special needs families including adaptive bikes, wheelchairs and chairlifts for cars. Please check them out and support them however you can. Their name is Variety Charity of Kansas City.
We realize that as a family we have been incredibly blessed to receive all of our adaptive equipment without paying for it ourselves. There are those that really need it and cannot find the resources--please, please help them out in any way you can. This adaptive equipment, unfortunately, is all very expensive and is impossible for many families who are already in a huge financial strain because of medical bills.
We are now looking forward to a wonderful Christmas at home with Nana and Papa who should be arriving tomorrow to beat the snow. We will post plenty of pictures, including ones with the new apron Grandma just bought for Olivia. Too cute for words.

Saturday, December 11, 2010

the jekyll and hyde of the holidays

I LOVE this season. I have always loved it. The "feeler" in me adores the smell of Christmas from trees and candles, drinking hot chocolate, bundling up outside and snuggling inside. Brian usually gets onto me for trying to extend the Christmas season too long by putting our tree up the day after Thanksgiving and not taking it down until New Years. But this year I find myself oscillating between excitement and sadness--like I think so many people do.

We love celebrating the things that have happened in the past year--the people that are with us and the things we have accomplished. This year we are so excited that it seems Olivia's Christmas will be much jollier than the last. She is so active and involved now which will make our celebrating all the more fun. There are so many accomplishments we could celebrate too, especially for Olivia, but also for the rest of our family. We have so much to be grateful for and oh so much to hope for next year.

The holidays are also a time where many people feel deep sorrow because of the loss of loved ones from their lives. It seems so evil sometimes that in the midst of what seems like the whole world celebrating that some people are not able to think of anything but loneliness. I will have to say that this has not been so poignantly the case for me until this year. Still, stuck to our fridge next to the reminder to get my thyroid checked again, curled up in a little scroll is the sonogram picture of the baby we miscarried last September. I have dated it September 2. September 3rd we went for another sonogram and learned the baby had not made it. Sometimes I can't decide whether it is a blessing or a curse to have this physical reminder. Usually I forget it is there, but this morning it is sitting next to me on the couch while I'm typing, not getting lost next to the shopping list. I think I kept it on the fridge because I am at such a loss with what to do with it. Put it in a photo album? Keep it in a drawer somewhere? I don't have the balls to frame it or the guts to throw it away--so it just stays there on the fridge in limbo. I guess I have been too-- in limbo.

While I have convinced myself I'm ready to try getting pregnant again I'm not really sure if I am. What do you do with the leftover feelings? Put them in a drawer somewhere too? Are you ever "ready to move on?" My biggest fear is forgetting--is not giving that baby the remembrance and the honor that it deserves. I never want that part of my life to become hazy where I don't remember if it was my life or if it was something I saw on tv, or a story someone told me once. I feel like sometimes my past is already like that to me, and I am afraid. Afraid that this will become one of those memories too. Afraid that if we get pregnant again it will be like the miscarriage didn't even happen.

I don't know-- I'm just a rookie at this, but I don't feel like you can ever really get over it. Not that you can't move on, or be excited for friends when they get pregnant or have babies, or even be excited for yourself when you get pregnant and have babies. You let this little teeny tiny life change your heart and change your life and you carry it with you in a helpful way that allows you celebrate the good things in life differently than you would have. Of course easier said than done. I am not there I don't think, but making my way slowly but surely.

So, I think I will keep the picture and the feelings close to my heart and just let the painful part go. That will allow me to celebrate my daughter and my family and this past year best. And we can celebrate the baby that we had for 9 weeks. We were blessed to have them that long. Thank you baby and thank you Lord for letting us look at life differently--celebrate differently--love differently.

Tuesday, December 7, 2010

Its beginning to look a lot like Christmas

Things are still winding down from our week trip over Thanksgiving, but I finally got the Christmas lights up, the mantle decorated and the tree up. Those pictures are at the bottom of this post. Today, my darling Olivia had a visit from her vision teacher who found the switch we are ordering for her at Coalition for Independence and brought it to us along with a power link, the thing that allows us to hook the switch up to control anything that plugs in. So today we tried it. First we let Olivia turn the mantle Christmas lights off and on. As soon as we showed her what it did she remembered and went to town beating the heck out of the switch. Then we plugged it up to a computer to allow her to play a game where when she hits the switch the balloons pop. She played for a full hour without much of a break and yelled at our vision teacher when she took the computer because she had to leave. The change in her is incredible. She is getting so much more response/input than before and is having a ball playing for the first time in a long time. We are so proud and grateful.

I don't know. You tell me. Does this look like an ornery face to you? She is hitting the switch to the computer.

When she hits the switch one of these balloons pops. There is also music playing.

Now she is turning the lights on the mantle on and off.

Our Christmas tree.

This is our mantle. Yes that is still the same color paint sample we put up a million years ago. No we have no painted, but I have decided on a color. Of course not that one. One of these days...

This is one of my favorites. Last night when we were waiting for daddy to come home.

Wednesday, December 1, 2010

Happy 1 Year Anniversary to my Blog

This might be the most difficult post to write so far. Olivia is doing great and our family is doing great. Really great. The difficult thing is reflecting on how terribly, in retrospect, we were doing one year ago. We would have never said it like that--those of you who asked know. We would mostly smile and say we are doing "good" or "fine". In our eyes I think we were. It is through the grace of God that we did not see the true rawness of our situation at that time. We believed we were shielded, not from the truth of the facts of what was going on, but from the sheer intensity of the emotions of the present and the possible future both for Olivia and for Brian and I.

There was several months last winter when all of us, including some doctors and caregivers, thought it would be a real possibility that we might either lose our daughter or that she would be confined to the physical, emotional, and intellectual status of a vegetable. For some families and communities this is a continuing fact. I can honestly say those must be the bravest people in the world. If Olivia was awake, she was staring at seemingly nothing, not showing any affect and hardly moving at all. Throughout the winter the Lord gave us strength when we faltered (like we did so many times a day) to trust in Him rather than in the progress of our daughter. Not everyone gets a happy ending. Not everyone even gets a happy middle or beginning. If we have learned one thing in the past year it is that the Lord's provision, love, and even blessings do not always come in the perfect package. We do thank the Lord that Olivia is better, of course. But we do not trust in Him because He has allowed her to get better. We trust in Him even if He doesn't, because Brian and I have gained the most insight into the heart of God and His desire for the church community at our very worst moments. His love is not dependent on giving us all the things we immediately desire.

I didn't really intend to say any of that when I started, but there it is. Really I just wanted to say thank you to you all. Not just for reading the blog, or for praying (which of course we greatly appreciate) but for showing your love in concrete ways to us too. In bringing us meals when we could not eat drive-thru food any more, in doing our laundry when we ran out of clothes, in comforting us while we cry, in laughing with us while we celebrate, in sending unexpected gifts when we were discouraged, in showing up at our house and forcing us to leave while you babysit and in a million other seemingly small ways that changed our lives. You have all changed us into people who are learning to care for each other. Thank you and celebrate the intense and unexpected life of my daughter over the past year with us.