Amanda Dickinson

  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 th...

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 ...

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 tha...

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 ...

I have been loving the tree of life pictures. If you haven't seen them they are typically pictures with the tree over the mother's breast and the child's face while nursing. I have seen some neat pictures with bottles as well. While these pictures are beautiful and I love seeing them, it is hard seeing them as it reminds me of missing out on this experience with Kaleb. Kaleb and I may not have gotten to ever get to this point of him nursing even though I had continued to hold out hope, but I wanted to make my own pictures. A look at what feeding looks like for us and the love and work that goes into each feed. The first is a picture from one of my last pumps on November 4th. I had made it 14 months and a few days of pumping. Even though I still had 5-6 months worth of breast milk in deep freezers it was a hard moment to look at my supply dwindling and knowing that I was about to end that chapter. The other picture is Kaleb getting breast milk, just in a different way th...

You're not throwing home runs. This is what my four year old told me while I pitched to him one night after he struck out. I told him I don't throw home runs, home runs are something that you have to hit. To which he informs me in his frustrated tone, "well you're not throwing pitches so I can hit home runs!"  It made me realize we can often find ourselves whining and complaining to God about this very idea. We want life to pitch it right down the middle of the plate. Better yet, just set it up on a tee for us to smash. We want to know where the pitch is going and that it's going to be a pitch we can hit for a home run that follows with us feeling pretty pleased with ourselves as we comfortably trot around the bases.  Well on August 26th, 2015 we were thrown a curve ball as our life took a sudden and unexpected turn with Kaleb's early and necessary arrival. Mix that with all of his health issues such as a brain bleed, heart defect, chr...

Many parents have had bad experiences when they learned of their child's diagnosis. DSDN is running a campaign this month with   # deardoctor   letters. I encourage everyone to go and like their page. (This is the organization that has the amazing rockin mom groups). The following is my letter to medical professionals. Dear medical professional, I am writing to share my diagnosis story with you. Each parent has their diagnosis story, the time in which Down syndrome became a part of their family, but I have never really discussed mine. Unlike so many fellow parents, I haven’t written to a doctor about our diagnosis story. Many parents have chosen to write either to thank them for the way in which they shared the diagnosis, or has is often told, families writing and asking their doctors to reexamine the manner in which they share this type of news to other families in the future. The reason I haven’t written before is because my diagnosis story wasn’t much of one and d...