She now officially has Thyroid disease. Her numbers have been increasing for about 5 months, so it was not a huge surprise. This is really not a big deal either. She will take medication to stabilize it and she will be fine. It's the bigger part that makes me MAD! That she now has something on that "list!"
There is a list of medical concerns when you have a child with Down syndrome. They so graciously gave me the list verbally on day 2 of her life. I don't remember most of it, except the big ones like - she is more likely to get cancer.
I am also mad because my other girls don't have a list. I am GRATEFUL they don't, but I don't want Kamryn to have a list either. I don't want her to get sick, teased, treated different, just as I don't want that for any of my daughters. The perfect life, that is what I wanted.....
Shortly after Kamryn was born, and I was still lying on the ground from the emotional trauma, someone asked me if I thought I was going to have a perfect life. Well, the question hurt, because you know what? I did.
All those things I read about: Husbands dying, children getting sick, losing your house to a fire, becoming injured in a car accident...I never thought those things would happen to me or my family.
Naive, I know.
During the first year of Kamryn's life I became fearful of everything happening. It was like someone had thrown cold water on my face and I realized---WOW, things do happen and they can happen to me!
The fear is long gone. I realized and accepted that life happens and it is not always what you plan, wish for or even want. But it happens. And most important in life, than what happens, is how you deal with and live it.
So, I was mad last night. For about 15 minutes. I let myself be mad, angry and a little sad. Because, well, Kamryn does have Down syndrome and that may mean we will have to deal with some of those not so pretty things in life. I won't wait for those things to happen though. I am going to enjoy right now, today.
I am going to embrace my life and hold on tight to it, because it is a beautiful life and I love it. And we had a beautiful day today and I expect to have a beautiful day tomorrow too!
I felt the same way, that "bad" things won't happen to us, to our family. Some days I am still shocked. I asked my husband if he ever thinks that it's "amazing" that we had a baby with Ds. He said, "I am just amazed by him." This is so true and it really changed my perspective.
ReplyDeleteYou are right, it is a beautiful life! Thanks for your comment on my blog.
sorry to hear that Kamryn's thyroid numbers were off - I was surprised to hear that you have her blood drawn every 6-8 weeks... we have been doing every 6 months and I wonder now if I should ask about having it done more frequently? In december some of Whitney's thyroid #s were a little off but this past month they looked alright - maybe we should have another look sooner than 6 months? i wonder...I absolutely love that last pic of Kamryn -could she smile any bigger???!!!
ReplyDeleteI know exactly how you feel about "THAT LIST"!! Ugh!! Sorry to hear about Kamryn's thyroid #'s, but the "good" of this situation is that you know NOW and that your doctor is staying on top of things!! Our pedi does bloodwork every 6 months too (just like Laura's)....I'm actually quite impressed that your pedi checks every 6-8 weeks! Hmmmm, now you have me thinking!!!!!!
ReplyDeleteI just love these pics.....your girls really are BEAUTIFUL!!! The last pic of Kamryn is just priceless..........oh that smile.....sigh:)
Andrea, I couldn't agree with you more.......live life for TODAY and truly ENJOY it!!!!
Andrea, thank goodness you found it now because those hormones are important for brain development. It is a blessing she has great medical care. Both Mylie and I take the same medication for the same issue with our thyroid. Mylie was born with it but I, funny enough, became hypothyroid about a year after Mylie was born. I laughed when my doctor told me. What was I doing with that issue? Anyway, it is an easy fix and a minor issue overall. I'm glad you got it all taken care of.
ReplyDeleteLife is still beautiful and perfect with all the valleys and mountain tops we visit while alive. The bigger picture is even more beautiful than we can imagine. I don't think we are supposed to know why, or understand... I think we are to trust and to enjoy. So, I'm glad that you are enjoying because doing anything else is a distraction from the incredible blessings bestowed upon you.
lots of love to you and that gorgeous family!
mia
Loved reading your post tonight. Not because of Kamryn's throid disease ( ofcourse not!), but because of YOUR response to it. You have turned into this amazing warrior mom ready to change the world's perception of people with DS. I am honored to be along side you for this ride! Kamryn's smile melts my heart and I can't wait to cheer on all her accomplishments, as we have done with all of our little bundles. Life good, life is sooo good! I love you! Victoria
ReplyDeleteHi. You might want to find out what thyroid patients have learned about far better treatment for hypothyroid: http://www.stopthethyroidmadness.com Your sweet daughter deserves the best treatment.
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