I really can't believe it's March! Growing up, time lasted forever, and now that I am getting older and have a family of my own, it races by.
The race is in 3 weeks and I am so excited!! What a wonderful thing this is going to be. Isabella has so many gifts to give and has touched so many lives. I feel so blessed these days to have her as my daughter. The lessons she has taught me and our family cannot be bought and I will always be grateful for the opportunity to learn them.
We are gearing up for the Princesses' FIRST birthday! Oh my goodness!! A few months ago Matt and I thought she wouldn't make it, and here she is happy and sassy! Naturally it's going to be a blowout party. I'm pulling out all the stops. I ordered her cake from a bakery in the city called Ruthe's Sweet Justice (if you haven't had their stuff, your crazy!), and they are making her a giant pink castle cake....complete with a blond princess on top!! The theme is PINK (do other colors even exist anymore???) and I really cannot wait. This is going to be a total celebration of her life and the year behind us.
Although there is some sadness to her turning one. The things she can not and will not do. The fact that with each passing year, we are more than likely closer to losing her. Many things to think about, but for me the most important thing is be positive and embrace the things we do have in Isabella. Sure, she does not walk or talk, but she LOVES us and needs us and is a real member of our family. She is still so sweet like a newborn (a 26lb newborn!!), and loves to be held and cuddled. There is something so special in that.......
I hope you all can make it to the run/walk on March 24th. Remember, just go to www.runningforbella.org to register. It's going to be an amazing day!!! :)
3 comments:
Michelle I love this blog.I think about her and pray for her every single day.Love ya,DaD.
Michelle, This is such a great blog. Spencer and I are signed up and ready to run. See you there! Love, Ashley
Hi! My name is Charity Lyon. I found your blog after some people at my church told me about seeing Bella on channel 9. You are a beautiful family, and we are praying for you! I hope the run went well.
Several church members told me about seeing Bella because she seems to have many of the same challenges as our 20-month-old daughter, Liberty Grace. My husband, Travis, and I also have a almost 3-1/2-year-old son, Lake. They're 21 months apart-about the same as your precious children!
When I got to your sight, I was amazed at how similar Bella and Liberty look. They both are beautiful girls with gorgeous, long eyelashes and cute little noses. In the pictures, Bella had her head turned to the right and slightly upward, the position Liberty most likes. Bella has fair hair and eyes while Liberty's hair and eyes are dark, but they both have unmatchable beauty!
Anyway, Liberty does not have lissencephaly, but she suffered extensive brain injury after open-heart surgery when she was 3-1/2-weeks-old. Now she has infantile spasms, cortical visual impairment, poor head control, some low muscle tone with some arching, and is unable to sit, roll, eat well, etc.-much like what you described for Bella and what I read about with lissencephaly. So naturally, we felt a closeness to your family, even though we don't know you or have the same diagnosis for our daughters.
We do not know what you're going through, but we do understand facing major challenges as we love our children and deal with major disabilities with little hope for further development. Just know that you have a family in Cherokee, Oklahoma who will be praying for your family as you wage this war.
As a side note, we are getting ready to get Sabril/Vigabatrin for Liberty. We're glad to hear you're having good results with it. Can I ask how you got it? We've looked into ordering it over the internet or through a Canadian pharmacy in Wichita, Kansas, However, our epileptologist won't write us a prescription. We may have to actually go to Canada to get it. Did you have to go to Canada?
This is a personal question, so I understand completely if you don't care to answer. I just was interested when I read that in your blog for Bella. If you do have information to share, please e-mail me at charitylyon@yahoo.com. If not, have a great day, and know we expect beautiful things for Bella's life and for the rest of your family!
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