Small Progress by Ellen Stumbo

mat man

“Mom. Mat Man?”

Lately, before we begin our bedtime routine, Nichole holds a box of wooden pieces and foam shapes. She is ready for quality time with mom. She is ready for Mat Man.

We sit on the living room floor and I start singing the song. I am a terrible singer. She doesn’t care.

Mat man has one head, one head, one head. Mat man has one heaaaaaaad! So that he can think!

I hold two of the big curves by my head, making a circle. Nichole laughs at me, “You funny!” She reaches out and imitates me. Then she carefully, oh so carefully places them on the carpet.

We make Mat Man.

“Again?” she asks.

Then she asks to make letters. Finally, with the wooden pieces we spell, “Nichole.” She points at each letter and says its name. She knows every letter of the alphabet, but her favorite letters are the ones in her name. N. I. C. H. O. L. E.

My daughter is five years old, and she has Down syndrome. She struggles with her speech, and we are not sure where she is at yet in her intellectual abilities since she has a hard time with her words. This is a learning time, but there is also a heart connection taking place as I find myself overwhelmed with love for this little girl and so incredibly proud of her progress.

And then I think about myself, the many disabilities I have: selfishness, self-reliance, greed, jealousy, lack of self-control, etc. Yet sometimes I begin to get it, a little at a time. As if I was sitting on the living room floor with God, practicing my trust in Him in little things. And I know He smiles at me overwhelmed with love too, so proud of me for those small accomplishments and the ways in which I make progress in the deep places of my heart.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

A Gift of Joy by Ellen Stumbo

060910_Barbies_572_pbc
source: Tulane Publications

She claps her hands, smiles, and her eyes sparkle with excitement.

“Mom! Daddy!” she says, inviting us to clap along with her.

It doesn’t matter what we are doing, every time, every single time we find her joy irresistible. So we clap with her. In her excitement, she takes a bow and laughs. So we cheer for her and clap some more.

When her movies finish, as the credits roll and the fun music plays, we go through this routine. Sometimes I wonder if she thinks, “That was a great show, it was fun, I really enjoyed it. I feel so happy I cannot contain myself, I need to clap, cheer, and invite others to join me in this moment of joy.”

My daughter might face extra challenges because she has Down syndrome, but her ability to enjoy life and celebrate every day moments surpasses the ability I have to do the same. So she stands before me clapping, smiling, with joy radiating from her little body and I can feel that joy and excitement.

She gifts her enthusiasm about life, and it is contagious.

I sometimes hear people question if people with Down syndrome or other disabilities are contributing members to society. Maybe once I wondered the same thing. But I know better now. While their contributions might not include being doctors, scientist, or teachers, their contributions pierce through the very essence of what makes us human: love, joy, kindness, compassion, understanding, and complete acceptance. Contributions that have already touched my heart and changed my life.

So I clap and celebrate when the Barbie show is over. I delight in the little girl that takes a bow, and sometimes I bow with her too, a sign of thankfulness for the joy she brings into my life. The gratitude I have that God chose me to be her mother.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

I See You by Ellen Stumbo

Angel with dirty face
source: Calhoun Abbott

Dealing with my daughter’s diagnosis of Down syndrome was difficult. There were many tears, and a broken mom shaking her fist at God pleading, “Why me?”

Yet the power of love is strong. Soon the sadness became wonder for my little girl, whom although different in some ways is perfect in the areas where I lack. There are areas in my heart where I have disabilities, yet she is so whole. Love, joy, acceptance, empathy, faith … they come to her so naturally, so effortlessly, and I am the recipient of such gifts when I need it most.

Nichole is five years old, her speech is limited, yet I often wonder if her words are messages from God, reminding me that He is here, that He sees me, and that He cares. She has a keen ability to know when I need to be encouraged.

“Mom,” Nichole grabs my face between her chubby short hands, making sure we make eye contact. Her face breaks into a smile, a smile so full of love she melts my heart and I am overtaken by emotion.

“Mom,” she says again, “You Ah Pee-Tee.”

Her words surprise me. Her message, so clear. My daughter thinks I am pretty. But it is more than that, because I have been struggling with ministry. Sometimes being a pastor’s wife is hard, ministry is difficult, and I wonder if God sees me, struggling, trying to stay afloat, and being faithful to His call.

I see you, I feel Him say, I see you.

Nichole does not let go, she keeps looking at me, smiling. It is not the first time I see His love through her eyes, or His care through her smile. And even His encouragement, through that broken speech that communicates so much to my heart.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

Not Easy but Good by Ellen Stumbo

My daughter has Down syndrome, and dealing with her diagnosis was difficult. I pictured a life defined by limitations, rather than possibilities. After a while, I began to see the blessing that I had in my daughter, and I came to realize she was the baby I always wanted, I just never knew it before.

If I could go back in time, this is what I would tell myself:

 

  • Dealing with her diagnosis will be one of the hardest parts of the journey. The rest is simply everyday life.
  • Grieving comes in waves. New stages might require for you to grieve all over again. It’s okay. It does not mean you don’t love your child or that you have not accepted her diagnosis. It is normal to feel this way.
  • Reaching milestones will be an accomplishment of extravagant joy and celebration.
  • She will be a child first. Her disability will only be a part of who she is, not what defines her.
  • You will love her with a fierceness that will surprise you and fuel you every day.
  • Your heart will expand a 1000 times over.
  • She will bring you incomparable JOY.
  • You will come to realize how much you needed her.
  • Thanks to her, your priorities will change as you understand what really matters in life.
  • It will not always be easy, but it will be good!
  • You can do it, and you will be better than okay.

My daughter has collaborated with God to work in my selfish heart. A heart that many times is so lost in this world that it forgets that the standards I live for are not the ones set by people, but those set by God. It has turned out Down syndrome was not a limitation, but a gift that has expanded my heart.

October is Down syndrome awareness month. As I look at my daughter, I recognize I have much to celebrate and be thankful for.

Ellen Stumbo is a writer and speaker. She is the mother of three daughters: Ellie; Nichole, who has Down syndrome; and Nina, who was adopted and also has special needs. She is wife to Andy, a pastor.

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