Down Syndrome Soap Box


3 months!

Since my life has taken an unexpected and unplanned turn I have noticed something brewing in my daily dialogue.  I am finally catching on, reflecting and now analyzing my Down Syndrome Soap Box. It is a part of my life now in this particular season and probably for many years to come a significant subject very near and dear to my heart.  I find myself in conversations with other mom’s with typical children getting on my soapbox about Grady whether it be his little achievements to something weighing on my heart when it comes to his diagnosis. I don’t know if they care to hear all about it, or if they understand, or maybe I am rambling. I like when people ask questions, then I know atleast I wasn’t the one to start up my soapbox.  I don’t want to overwhelm them, but my insecurities weaken me and allow me to think I do.  My life has changed so much and all these new experiences leave me with a lot to chat about.

I am lucky to have a friend who has a 3 year old little one with Down Syndrome at my church, when I ramble with her, or when my thoughts come out jumbled or a vent is highly needed… she listens and can usually translate into perfection my discombobulated thoughts. I must say I am grateful for our sisterhood of the extra chromosome.

I have days where I am not as strong as I want to be, days when I am broken, days when I live in a state of distress when the future comes to mind…(it’s truly the work of the Devil who never stops fighting to win the battle)…..In those broken and weak moments a simple play date,  phone conversation or church group gathering comes around and there I go again, sometimes unknowingly or unconsciously I start talking about it.  Not too long after I talk about it, I self diagnosis myself with anxiety, as I am in a state of  …. vulnerability and reflection. I want to say forgive me, but I would be making an excuse for my emotions, feeling, my situation, and my heart.

The state of reflection is where I am at a lot. It is my ultimate hope to just share the Joy that Grady is in my life. I want my words to be fitted to describing my experience and my child in the most accurate God Pleasing way. I want my words to do Justice in advocating for Grady, I want to make him proud of me, because I am so proud of him.

Somedays I want to shout it out, whether people want to hear it or not, whether I jump back on my soapbox again… I feel I have been given this gift that society in general has deemed a “burden or un-fit” (why else would abortion rate by 90% in the case of a diagnosis of T21?) and yet God has granted me his compassion and loaned me his Gift to love on. The Gift of Grady.  I guess that is the best part of this journey so far, in the last three months just how much God is working in my life, my heart and my family.

So I pray for my words to be true, reflective and clear. I pray that my words find understanding & listening ears and If  not then I pray for wisdom to handle the situation. I pray for other’s patience with me. In that prayer I give thanks for the wonderful people in my life who have listened, the unbelievable web of connections, the doors that are opening all around me, and each person who has loved on Grady. In prayer and thanks to God.

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7 thoughts on “Down Syndrome Soap Box

  1. Sheena says:

    Erin, I love that you are so real with your emotions and you can just spill it all out on a page!! I am so glad to be walking the same journey with you, I only wish you lived closer so we could talk more frequently and have play dates. You have been such a sweet blessing in my life!
    && I haven’t even met you in “real” life.

    We are so very blessed to have our sweet gift’s from the Lord!!
    I have to say that I too have learned alot from the very start of this journey. Well actually let me rephrase that, since the beginning of being pregnant! The Lord has shown me that it is such a blessing to have blessed my womb, to seeing my baby in my womb, to feeling his first kick, to have that GORGEOUS belly, to savoring every moment of labor and delivery, to meeting my sweet baby and loving on his that first moment & now to watch him grow and teach him about the Lord. I could go on and on. It’s so easy to get on a “soap box”. I enjoy reading your blogs, praying for you and rejoicing with you!!

    Thank you for sharing your life with me!

  2. Christie says:

    Erin, Grady is so blessed to have you as his Mommy! Your message is laced with grace and truth. God knew what He was doing when he sent Grady to such a precious women. Christ in you, the hope of glory!

  3. Melissa says:

    When I talk or write about my experiences with Claire I often feel like the words never come out how I want them to. I hope that people can tell that I love my girl completely, but also know that I still have worries and fears. I have people tell me how strong I am, and what a wonderful job I’m doing and it almost makes me feel worse. It almost makes me feel like I’m not doing enough for her. Now I’m rambling so I’d better get back to work!

  4. Erin says:

    I love your post, you are not alone in your feelings. Sometimes it feels like all my thoughts are consumed with Ds. And most of the time Lucas is all I can think and talk about. I wonder too if people get tired of hearing of it? I feel conflicted when talking to people I don’t know very well. I want to talk about my worries but I don’t want people to get the wrong idea about my son. It’s hard to find a balance. You have to experience it to truly understand.

  5. Felicia says:

    You so beautifully put how I have been feeling these past 2.5 months. It is so good to know that I am not alone in my feelings. I sometimes feel like I have a chromosomal addiction because that is all I think about. Not that I am still grieving over it, I just want to make sure I am being the best I can be to my little Grace. Grady is so lucky to have a mommy like you.

    And I love it…”sisterhood of the extra chromosome” how true it is…I feel like I have a new family.

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