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.

My Juggling Act by Ellen Stumbo

Juggler

“Mommy! I wish I had no sisters because I never get to be alone with you!”

Ellie, my oldest, stood with a frown on her face and hands on her hips. I had just walked in the house, coat and shoes still on, with Nina, my second child, on my hip. We were returning from a doctor’s appointment that had taken all morning. I was exhausted, and Ellie’s words threatened to buckle my knees.

It was true. I could not remember the last time I had spent one-on-one time with any of my girls if it did not involve a doctor’s appointment or a therapy session. Common in our family as two of my girls have special needs.

I was trying — trying really hard — to make a full schedule work with my 2-, 3-, and 4-year-old girls. While I was being efficient, the relationships were dragging behind.

It was time for a change. My girls needed me.

Ellie and I began to do things together. Things as simple as going to the grocery store, just the two of us. When the little sisters take naps, we actually play together, and I am reminded how much fun Barbies can be.

When I take Nina to a doctor’s appointment, I take a little longer. We go to a store or restaurant and we spend some time together, just us. Sometimes, when I have quick errands to run that will not require me to get out of the car, I bring her along and we talk. (Nina has Cerebral palsy; her mobility is limited.)

Nichole and I take full advantage of her sisters going to preschool three times a week. We have wonderful mornings of library time, cuddle time, and learning time.

Having three little girls means that I am a busy mommy. But it also means that they need time with just their mommy (and daddy) to feel valued and important. In my juggling act as a mom, I chose to make this a priority, because it really matters.

Ellen Stumbo is a wife, mom, freelance writer, and blogger.

Photo used with permission of Flickr Creative Commons.

If you have more than one child, how do you find time to spend one-on-one time with each child? Share your ideas with other readers by leaving a comment!