Saturday, October 26, 2019

Awareness that it's Hard

Seriously, sometimes I feel like I blink and another month has flown by! Between school drop-offs and pick-ups for Benjamin, a new venture of homeschooling my six-year old, and keeping up with a preschooler and a toddler, my life feels like a whirlwind most days. So, here we are nearing the end of October, and I am finally sitting down to pen a blog in honor of Down Syndrome Awareness Month. In all honesty, the past few years I have struggled to know from what angle to write during this month. My goal is to always be truthful and to speak from the heart. We are ten years into our journey of raising a child with Down syndrome, and two-and-a-half years along the unexpected twist in our road with Benjamin's more recent diagnosis of autism.

Maybe it's just me, but sometimes I feel an unspoken pressure, especially during the month of October, to only write the "feel good" posts about life with Down syndrome. I have written much over the years about the joys and delights we have experienced with our son, but raising a child with special needs is in many ways a two-sided coin. There is joy, but there is also grief. There is beauty, but there is also struggle. There are victories, but there are also many defeats. To say it plainly, it's HARD, and no amount of sugar-coated sentiment or rose-colored glasses views can change that reality for those of us who are living in the trenches day in and day out.

I think that it if we truly desire to promote Down syndrome awareness, we must be honest about the joys AND the struggles. We have to be honest that some days, many days, are just plain hard, and it's okay to admit that it's hard. I believe that parents/caregivers of children with special needs, especially moms, can often fall prey to feelings of guilt when we admit our sadness and struggles. The lies and accusations internally screaming in our ears can be jarring...If I really loved my child enough I wouldn't struggling so much...I must not be accepting enough of who my child is if I'm feeling this way...What right do I have to be grieving when others have experienced much harder circumstances? My child is still with me. I should just be grateful...You get the idea.

This quote speaks volumes. When you are raising a child with special needs, you are often living in the tension of both joy and pain. One does not cancel out the other. Both are present, though one may be felt stronger on certain days than others. As I live life with my sweet Benjamin, there are moments when my heart feels as though it will burst with love and affection, and there are moments when my heart feels as though it will shatter with grief and pain. No matter what I'm feeling at any given moment, the constant thing is that I LOVE MY CHILD, and acknowledging the difficulties does not undermine the strength and sincerity of my love. If anything, it is a testimony to it. The greater the love, the greater the possibility for pain.

This journey can be a lonely one for parents. Well-meaning friends can come across as dismissive or out-of-touch with our struggles on the occasions in which we open up our hearts with vulnerability. I have felt the sting of this when others have tried to relate to a difficulty I am experiencing by comparing our situation to a very different one involving their typical child. I have felt this sting when others have tried to give what they sincerely believe to be an "encouraging" response in an attempt to make me feel better. (ex. "God only gives these children to special parents because He knew you could handle it.") Sometimes the best response someone can have is to simply LISTEN. Acknowledge that it's hard. Don't pretend to understand when you haven't walked in our shoes. Don't feel like you have to find the "right" thing to say. Just be present and allow us to share. (I wrote about this in greater detail in the post Help that Hurts. You can read it here.

Over the last ten years I have become increasingly aware of my own weaknesses and shortcomings, and I have had to come face to face with the often glaring contrast between my good intentions/ideals for motherhood and how I'm actually mothering on a given day. I will never be a perfect mom. I will never "have it all together." It's okay for me to grieve. It's okay for me to admit that it's hard. However, it's NOT okay for me beat myself up with guilt and unrealistic expectations or to wallow in self-pity.  It's ESSENTIAL for me to acknowledge that I can't do this in my own strength. I was never meant to do this in my own strength. I need help. I need community. And above all--I need JESUS. 

He is the Strength I must draw from in the midst of my weakness. He is the Hope I must cling to when I am tempted to feel hopeless. He is the Shepherd I must follow when I feel lost. He is the Servant I must model as I serve my family. He is the Healer to whom I can entrust my heart. He is the Source of joy in the midst of pain. He is the place of Comfort in which I can rest my weary soul. He is the only One who can truly meet my needs as I raise my child with special needs. He is the Love that fills me and empowers me to love with greater capacity. The greater my awareness of Him, the greater my ability to walk out this journey with faith and with joy, even on the hardest of days.   

If you have enjoyed reading this blog, please check out my book, Reflections from Holland: A New Mother's Journey with Down Syndrome, available in paperback and Kindle. Thanks for reading!



  1. Thank you so much for sharing your honest, heartfelt words. They are a comfort and encouragement and help me understand better how I can be a good friend to others. I plan to purchase one of your books on Amazon (I read about it through the Above Rubies magazine) and I am thankful for sisters in Christ like you. Praying for much love and joy in your household! Thanks for sharing your heart and life with us!

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