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.

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.

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.

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.

The Thanksgiving Tour 'O the South

I haven't blogged in about 10 days--I know. But this time there is a good reason. We have been gone from KC since a week before Thanksgiving on our family tour of the south land. We dropped the dog off in Joplin with my parents for the week, got some sleep, and then made a 7hr journey to Hallsville, Tx--where Brian is from. We had a fabulous time! Livi did great, I wasn't a total moron and actually packed enough of everything, and Brian got back to his roots:

This is Brian and his dad cutting down a tree for fire wood for the winter.

Livi had an awesome time catching up with Nana and Papa and actually convinced them to come brave the KC winter for Christmastime:

Sorry, Nana. I know you didn't have time to get ready this morning. Too much cuddling going on.

The Wednesday before Thanksgiving we left TX and drove 5 more hours to Fort Smith, AR where my sister and her husband and my parents (and my sisters adorable house just screaming for Christmas decorations) were waiting on us. We stuffed ourselves again on Thursday with a lovely feast and had the best time laughing and carrying on:

No I am not posing as Mrs. Clause, mother. Just simultaneously decorating and waiting for stuff to come out of the oven. Geez.

Uh, I have no cutesy introduction to this photo. It just is what it is:

Sorry, Mal. Hate to do that to you. Well, don't HATE it...

After that there was actually another stop in Joplin on Friday to pick up the dog and have Thanksgiving with the grandparents, my brother and sister-in-law and uncle, but by then we were so stuffed and tired that we forgot to take pictures. Sorry.

We got home on Saturday, watched the Pigs beat LSU (GO HOGS!), tried to rest yesterday, and then showed up for PT and OT this morning at the hospital at 8:30. It started out well. Yes, this is the "well" part. There are no picutres of the "not well" part also known as sleeping through OT. Andrea (our awesome PT) is working on walking with Olivia. She, of course, is making Livi do all the work, which is why she is so upset. Livi did take a few steps on her own today with a walker. YAY:

Doing well.

And beginning "not well".

I do have some more things to say, but am exhausted as I'm sure you are from reading this and will post later. Hope everyone had a wonderful Thanksgiving!

Look, ma...one hand!

Sorry we've been so negligent. We are in the throws of the holiday season early at our house, unpacking from the lake and repacking to see Nana and Papa for the first time at their house this weekend. We will also be seeing Uncle Thomas and Aunt Amy for the first time in almost a year and a half! We can't wait! So, driving 9hrs away warrants more planning and laundry. Thats what we've been doing.

We have also been busy being awesome this week--well, Olivia has anyway. Last week at OT she took 5 bites of applesauce from a spoon! She did great the first two bites and was kind of half out of it for the next few, but we are so proud and I will be taking the camera this week to PT and OT. She did NOT go in the pool as planned for PT last week because she was already sleepy (from lots of appointments earlier that day) and the water temp in the pool is enough to make anyone drowsy, so we'll try again this week.

Yesterday Olivia had whats called an Assistive Technology Evaluation. There are lots of tools and thingamagigs to help kids like Olivia make decisions on her own and act more independently. She has used whats called a "switch" before. I think I have told you about it, but it can hook up (with the proper technology) to anything that is either battery powered or plugs in and with a click from her hand she can make music go on toys, turn the Christmas lights on and off, turn the TV on and off, choose options that say things for her like "I want a song" "I want to read a book" and whatever we record them to say. Its really complicated and awesome, so I'll just leave it there.

There are lots of different kids of switches. A lot of them look like a little mouse for a computer and she touches it to make things go, then picks her hand up and has to touch it again to make it go again. Yesterday during the eval they got out a switch I had never seen before. It look like a joystick with a vice grip on the end to attach to different things at different angles. Yesterday we attached it to the tray on her kid kart. To make it go she can either hold the joystick switch, bump it (because it automatically spring back), or lay her hand on it if we turn it sideways. The following pictures are amazing because Olivia is working on a computer program that allows her to make race cars roll across the screen when she touches the switch, which she did on her own yesterday--a lot.

That red thing is the switch. They wrapped it in red mylar so its easier for her to see and interesting for her to feel with her hand. She is not looking at the camera because she is watching the cars.

No, its not Christmas at our house. Christmas and therapy usually look the same. :) Here she is looking at me, I'm pretty sure telling me how cool this is and how awesome she is!

You can see one of the race cars here (which also have cute little numbers on them) and how we can position the switch so it is super easy for her to access. She just gives it a little nudge. That is Kathy in the background too. Our awesome vision teacher who we just adore.

I know this post is longer than my usual. If you read so far please bear with me for another second. Yesterday I was amazed to tears to see my daughter take steps towards independence. For most kids that begins with mobilizing themselves, and we're on the road to that, but Olivia has not been allowed by her own body to choose things for herself hardly ever. (Excuse me, tearing up again). Teaching her how to make decisions on her own and watching her learn to carry them out is my dream for her and this is one of the first steps. I am so proud of my beautiful daughter. She works very hard day in and day out for very little result, but she keeps trying and she is becoming stronger and more independent as the days go by. I cannot say enough good things about the professionals in our lives who help me help her. Thank you, thank you, thank you Kathy and Tammy and Sherri and Andrea and Janelle. Who knows where we would be without you. You inspire me to inspire Olivia.

Weekend at the Lake

A huge thank you to some long-time, wonderful friends of the family who offered up their amazing new lake house for our family to use for the weekend. We had a wonderful time bonding with nature and eachother. It was a much needed weekend vacation for Brian and I, especially, coming off of a two-week stay at the hospital for Olivia. We were really blessed to have some time together away from the city and everyday pressures and were allowed to focus on our family. I don't want to brag, but I did catch quite a few fish, though the biggest fish goes to my mother on our last night there. What a stud! Here are some pictures from our fabulous time. Enjoy!

Family shot

My man!

Me and my sister, preparing for battle.

The dock--and quite a view!