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The Power of Our Hands

Nancy Gianni, of GiGi's playhouse began her talk at the DSDN Mom retreat this past Saturday with a story of her oldest child. One night as a baby her husband brought in their little boy, this little inconsolable baby to her. He was still crying as she took and held him, but then as she laid her hand on his cheek he nestled in and calmed down. Nancy went on to explain the power of the hand; the power of a mother’s touch. Throughout her talk we saw evidence of the power of what our hands can do as we learned the how and why behind the creation ofGiGis Playhouse

Rachel Coleman of Signing Time was our keynote speaker on Friday night. She demonstrated the power of signing, when it came to her family and their story. Life has a way of taking us into uncharted territory but her hands have been an instrumental part of her family’s story. Not only were her hands a big part of opening the world up for her girls, but her hands have turned their story into the Signing Time episodes and video…

Give me your eyes; prescription strength 93

This use to be my prayer to God. Let me see the world trough your eyes. The idea behind this prayer was to see the world like He does so that I might love like He does. Even if as a human it could only ever be the smallest of fractions compared to His love.
Enter Kaden, enter Kaleb. With the two of them I became of a mom to 93 chromosomes (one with 46 and one with an extra, resulting in 47).
With Kaden, my prescription got stronger as I learned of a new love; the love of a parent. How a parent's heart stretches to hold this love so big at times you worry it might burst. As a friend likes to say, "You learn what it's like to have your heart walk in another's body" (and that is coming from a friend who doesn't get mushy and emotional). If I was capable of this love, I could only imagine how much deeper his love for us is.
However, with Kaleb, I worried. I worried that his prematurity and extra chromosome would jade me. That I would see the all the bad there is t…

In My Arms

Wrote this for my boys a couple of months ago. Both of my boys are cuddlers. I love it. Kaden still asks for me to "rock him" at bedtime which simply consists of me holding him a minute while we talk about his day. Kaleb likes a few minutes of cuddling after we read our bedtime book.

In my arms Let me hold you in my arms and hold you tight. Lean down and softly kiss you goodnight.
Let me hold you in my arms where everything is alright.  Here I will shelter and protect you with all of my might.
Let me hold you in my arms for tomorrow you'll have grown.  For you will be one day older and growing into your own.
Let me hold you in my arms when you're hurt and need to cry.  I might not erase away your pain, but I promise I will try.
Let me hold you in my arms as you listen to my heart beating.  These precious moments in time are numbered and so fleeting.
Let me hold you in my arms even when they grow tired and sore.  For one day I know I will reminisce and dream of just one…

Welcome to Village Rockin Mom

They say it takes a village to raise kids. When trying for and planning for kids I never imagined my village would include so many medical professionals. I also could not have pictured a group of women, most of which I have never met, who I would feel so connected with and who would play such a big part in my support system. This group of women who call themselves Rockin Moms.

One day while sitting in the NICU I posted in a Facebook preemie group about how lonely the NICU journey could be and doubly for a parent with not only a very premature baby, but with a baby who also happens to have Down syndrome. I was about to receive my first lesson on just how not lonely it was. A mother told me about the organization called DSDN (Down Syndrome Diagnosis Network) who has these Facebook groups. The full name of the group is Mothers of a child Rockin an extra chromosome. Groups and group members commonly referred to as Rockin Moms. By the end of the day I was a part of a community of moms that …

Letter to another family with a child writing their own book

To another family with a child writing their own book,
Kaleb is now either 16 months old or 14 months depending on how you look at it. Sixteen and a half months ago he entered the world 12 weeks early weighing 2 lb 2 oz. He is also considered 14 months old as of today since 14 months ago would have been his due date. For a parent of a preemie it can be confusing explaining the actual and adjusted age of a child. It can also be difficult as a parent to wait for milestones to happen that many parents take for granted.
Some days I do better at this than others. Yes, I knew from the time he was born a very small preemie that it would change things from the typical baby development timeline. Again I realized this when I learned of brain bleeds, Down syndrome, heart defect, and his other medical issues. It is a lot for a heart to take; wondering at their life, their potential. Wondering what milestones will they reach?
In some ways it gets easier and it some ways harder as they grow. It…