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.

Comments

  1. Marcia Wong says:

    i have once again shared this piece on FB and i hope u don’t mind, but ur really like my hero at this point :)

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