I have been avoiding the blog lately, have you noticed? I'm not sure if anyone even looks at this anymore. I have been avoiding it partly because I just haven't wanted to sit down and blah blah blog. But I think I am ready to let you all know.
Our sweet little princess has a diagnosis. She has Williams Syndrome. That sentence is hard for me to type. But it is the reality I have been struggling with for a while now. Paul and I took her to a geneticist at Primary Childrens and the day after Christmas, we got the call. The test results are positive. Talk about a Merry Christmas.
I have been dealing with a lot lately, and dealing with the reality of our future. But with that said, I am glad to have an answer and to be able to have a direction for Kaya. She will be happy. She will be so very loving. She has so much to teach us all. I know she is suppose to be here. Exactly 1 year from the day she told Paul she was suppose to come into our family, she was born, fighting for her life.
I recently read this quote. "It has been said by one, years ago. That history turns on small hinges, and so do peoples lives. Our lives will depend upon the decisions which we make- for decisions determine destiny." Thomas S. Monson. I have made the decision to not morn for Kaya that she will not have a "normal" life. I have made the decision to embrace her and all she will be. The genetics counselor said something in our session that hit me like a ton of bricks. She said "Kaya has Williams Syndrome, but it doesn't define who she is."
We will have some struggles ahead of us, but there will also be good times. My dad told me one day while we were gathered around her in the NICU. He said "Tiff, if we have a special needs child here, I want you to know that you will be the best mother." Thanks dad I will always hold on to that. She also has a father that loves her so very dearly, and 2 big brothers that think the world of her. She is one special little girl. And I get to be her mother. How lucky am I? We love you princess Kayabab.
11 comments:
OH TIFF... Where are my tissues so I can see to type this? I love you so much, and I too feel like you are the best mother for Kaya as does Dad! We love you all so much, and cant wait to see the huge mile stones our little peanut Kaya will make! We will forever keep you in our prayers and thoughts, Love you sis! Thanks for sharing your thoughts!!!!!
Aside from our own mothers we can't think of a more amazing mother, than you Tiff. What a lucky girl Kaya is and how lucky are we to be Kaya's aunt and uncle. She is one terrific and amazing girl. We love her to pieces and enjoy watching her stride.
Tiff- Thanks for the post. I have been thinking about you and Kaya since we visited before the Grand and was wondering how the appointment went. I think we all feel sadness at news like this because we are faced with the negatives and we can't foresee all the wonderful things her life holds in store for her. Kaya is such a bright beautiful little girl and no one who has had the pleasure of being with her sees her as anything less than extraordinary. We love you guys and want you to know that we are thinking of you!
Like you said, this little angel has been fighting from day 1, so I think she is supposed to be here no matter what. I don't know what we would do without her in our lives and I can't wait to see her progress and have her teach us what we need to know.
Love you guys and OUR little Miss Peanut.
Tiff, sorry for the sad news-- but I wanted to give you a ray of hope! My niece has Williams and my brother is very involved in the community. She is five now. I know my sister and brother would love to talk to you! Please call me and we can talk! 208-301-8601 I would love to talk with you.
Tiff, I'm so proud of you! I know how difficult this has been for you and Paul. I have to tell you of a little experience I had with Kaya on one of your Yoga nights. It was soon after her diagnosis and I was rocking her and giving he her bottle. I felt such a closeness to her. I was singing her her bedtime medley. When I sang "I am a child of God" the words took on a whole new meaning. Needless to say lots of tears and such deep gratitude for the opportunity to be part of her life. I've seen a difference in all the grandkids in the way they interact with her. She will help us be better people. I know she will be a blessing to all of us. We are all here for you, whatever you need.
Love you, mom.
Tiff, you're an incredibly strong woman and person, Kaya K is so lucky to call you mom. thank you for being such an inspiration of strength, i'm so absolutely enjoying us spending time together. just know that you're stuck with me and with that comes a girl who cares an awful lot about you and your family. sure love you, always here for you, cause i know you'll be there for me.
Tiffany,
I know that you were chosen to be your sweet darling little girl's earthly Mom. You are such a sweet heart and I know that little Kaya will thrive under your care. Please know that I feel as if I know her so well through Grandpa Ed's comments. I know that she will continue to progress though all the love she is given. Know that we love you and your sweet family so much and that you will be in our prayers. Love, Aunt Pitty Pat
Well heck Im sorry that I didn't read this sooner! I love that quote to! I am glad you are to the point where you feel like you can talk about it a bit. Just know like I have said before we are all here for you - all of you! I also am so grateful to have you in my life and I get to call you not only my friend but my Sister! YOur the best! Lv you ;)
Ps, He never said it would be easy~ But he did say it will all be Worth it!
Tiff, I finally got back and blogger and just saw this post. She is blessed to have you and everyone who has the chance to know her will be equally blessed as well. I have only known one other person with Williams Syndrome...he is truly a light to everyone who knows him. We are all grateful to have him in our lives and I mean that from the bottom of my heart. I think people with special needs are truly the closest link we have to God. My heart goes out to you because as a mom I'm sure you have a thousand more worries each day wondering what the future will be like for your family.
Love,
Mandy
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