For the first time in a very long time I feel like we are beginning to live a normal-focused life together as a family. It is an amazing feeling and I am so grateful for it. The days of being in the hospital on a weekly basis gets smaller and smaller in the past behind us. I thank God for that every single day.
We are no longer living with family. We have recently moved into a home of our own and we love it very much. And, although we are still in financial strain with all the catching up we have to do, it was time. Time for us to be together on our own, in our own space and to just feel settled. To be able to unpack things from our home in California that we haven't even seen in over 2 years ... it's a wonderful thing!
I can never express fully how thankful we are for all the help we have received to get us to this point. And, it is so reassuring to know that we have such an amazing support system to help us get through the years to come with Violet's monitoring appointments. A HUGE thank you everyone, especially to my mom & step-dad for taking us into their home this past year and to Violet's beautiful Sparrow Clubs school Samantha Smith! We don't know what we would do without you!
Violet ... wow, where do I begin? She is thriving and loving life! She is the happiest little girl I have ever known. Violet put her hand on my arm and said to me yesterday, "Mommy, you're my best friend." I just about melted. Her heart is so sweet. I feel so blessed to be her mom! She always makes me laugh, reminds me to find gratitude in the little things and to live in the moment ... My heart overflows.
This month is a very special time for Violet. She has reached 1 & 1/2 years with no recurrence! Praise God! :) We definitely have a lot to celebrate this Mother's Day. I look at her sometimes and think, you would never know everything she has been through and what her medical odds were by looking at her. She is so active and so healthy. Violet continues to exceed all of her milestones and shows no signs of being affected physically or mentally by her chromosome 13 deletion.
Violet's next EUA is on June 19th. On the following day, she will have her very first full vision check along with her usual Oncology follow-up appointment. We are a bit anxious to see what the results will be of her vision check. She is finally of age to have it done with telling results. Sometimes it seems like she can see out of her left eye when objects are held close and other times it is hard to tell. We don't know if she is only identifying objects by color and general shape or if she can see any detail. We soon will know. I pray that our sweet girl has some good vision in that eye so that she is not fully reliant on the right.
Favorites for Violet continue to be singing and dancing. She knows all the lyrics to so many songs! Her current favorite to belt out is 10,000 Reasons (Bless the Lord) by Matt Redman. She asks to play it over and over so she can sing it! :) She also loves to play her piano with Daddy as he plays his guitar. I love it!
Thank you to all of our loving and praying friends & family and those of you who are friends we haven't met yet. Your support always means the world to us. We have so much love for you! One day, Violet will be absolutely amazed at all of the wonderful people who have been praying for her and who are continuing to pray for her. I know, with the kind heart she has, she will be so grateful to everyone. <3
Comments
Post a Comment