Jul 012015 14 Responses

A Story about Ella on her 10th Birthday

(Today is Ella’s 10th birthday. She wants you to see her gift. To do so, click here.)

I jumped in the shower because I knew it might be a while before I had another chance. Jenny was in the early stages of labor and we were headed to the hospital within the next hour or two. I took a shower as much to clear my head as to clean my body. As the water fell on my face the words to a song came to my mind: “So shall this night soon end in joy.”

It felt like a promise. I was scared, not so much for me, but for my wife. No one wants to see their wife go through so much pain. She was scared. I’m still not sure how women choose to have children considering the process it takes to deliver. Having never witnessed childbirth, I didn’t fully know what the night would entail, but the words of the song were a great reminder. The pain would end at the sight of our little girl’s face. No matter the amount of struggle, “so shall this night soon end in joy.” (See: What I Prayed the Night Ella Was Born)

It became the refrain of the night, and eventually the next day. As an all-night birth experience turned into an “all the next day” birth experience, I kept being reminded of the words. Joy would be the ultimate definition of this experience. And it was. But it was a joy different than what we expected.

Ten years ago tonight, Jenny and I sat in a small hospital room waiting for our doctor to tell us the news. It was obvious that something was wrong. Obvious, not because we recognized a difference in our daughter—only my mother and the nurses saw the physical symptoms—but obvious because a pediatrician entered a hospital room late at night and asked to speak to us alone just hours after my wife delivered Ella.

Like most parents, the diagnosis of Down syndrome was more confusing than anything else. It wasn’t terrifying—Down syndrome isn’t life threatening. Yet it wasn’t a temporary hurdle—a simple surgery or hospital stay would not end the ordeal. It was confusing. While we knew about the condition, the only thing we really knew is that this was something she would forever have. With two words the direction of our lives had forever been altered, but not necessarily in a negative way. We would simply be going a different direction than we expected. (See: 8 Leadership Lessons Ella Taught Me in her First 8 Years)

Having walked in that direction for a decade, the confusion isn’t fully gone. I’m confident in what it is like to parent a child with Down syndrome for ten years. I have very little understanding of what the next decade might demand. While confusion is still present, fear is not. It’s not now and it wasn’t then.

While we were confused the night Ella was born, there was never any appearance of fear. We hurt knowing our daughter would face some unique challenges, but all fear was lost in a deep trust in God and His sovereign control of our lives. (See: A Dangerous Assumption About God’s Will)

In the hours before Ella’s birth, I kept repeating the line from the song, “so shall this night soon end in joy.” When the diagnosis came, I was certain a medical condition would not be the defining element of our daughter’s life. The night was destined to end in joy and we would make sure joy defined her birth and her life. Ten years later, I can assure you July 1, 2005 surely ended in joy.

While I never truly considered it before her birth, in the hours after the diagnosis, our spirits were boosted by one of the verses of the same song we had thought of all night. The verse reads:

Leave to His sovereign sway

To choose and to command

Then shall we wandering on His way

Know how wise and how strong is His hand

Before we ever knew the direction of our lives was changing, we were singing a song which encouraged us to trust the sovereign plan of God. He could choose and command whatever He desired which means the path we are now on is of his plan. The song reminded us that it is on the road of His own choosing that we would best be able to understand the wisdom and strength of God. (See: When Life Seems Out of Control)

Ten years has assured us of that truth. If I could go back and tell myself anything on this night ten years ago, I wouldn’t tell myself anything but those four lines. Chances are, if I could tell you anything based on where you are today, I wouldn’t need to tell you anything but those four lines.

I’m yet to meet a person who regrets trusting the sovereignty of God. Trust doesn’t mean we blindly like everything which happens to us. It does mean we surrender to the uncontrollable circumstances of our lives with a hopeful expectation that good can come from it. We can lean into the hurt because we know God is fully in charge. (See: How Many Chromosomes Will We Have in Heaven)

Today as Ella opens gifts, plays with friends, and blows out candles, I’m excited that we get to keep “wandering on His way” so that we can experience a deeper knowledge of “how wise and how strong is His hand.”

 

14 Responses to A Story about Ella on her 10th Birthday
  1. Barbara Mamal Reply

    The best line is: but all fear was lost in a deep trust in God and His sovereign control of our lives.

    Oh, if we could only all live our lives like this, with a deep surrendering trust in God!

  2. Tammy Reply

    Great job, Chef Ella! Those mini pizzas looked so yummy! After watching your cooking show, I wanted to make some mini pizzas for breakfast! I bet you write your own cook book when you get older. Hopefully we will get to see more Cooking with Ella shows soon.

  3. mokevaustin1 Reply

    Our journey as parents has been similar and there were many connections here. She is just an amazing kid and I am so lucky to have had her in class (and to be around her and your family in life). HB Ella!

  4. Barbara Daniel Reply

    Ella is a TV star! The cooking show made my heart happy! I want more videos with Ella and Jenny….great job

  5. Cathi Wyatt Reply

    Ella, I think you are adorable and your pizza looks so yummy that you have inspired me to try and make it too! Great job on your cooking show…I loved it!

  6. Pam Reply

    Great job Ella! Your pizzas looked fabulous and We are excited to make some! And we love all kinds of cheese too!! Happy birthday sweet girl!

  7. kristin collins Reply

    You guys are an absolutely inspiring family. I fell in love with this beautiful little girl when i worked at kids first. Cried my eyes out as i watched her walk out the door for the last time as her new journey kindergarten was that fall. Had so much fun with her!!!! Happy Birthday sweet girl!!! May you continue to blossom in all that you do!!!!

  8. Barbara Mamal Reply

    I also just wanted to add that the photo of Ella (I can’t view the videos – I don’t have access where I work) running with the orange beads and the white and orange striped dress is beautiful. She is radiating pure joy and happiness. You can see it on her face. How lovely!

  9. Devria Reply

    Loved the show “cooking with Ella” ! The pizzas looked delicious and I’m going to try making some too! Happy Birthday!

  10. Bradley Clark Reply

    I’m reminded of the chorus of a song from a dramatic musical. It’s sung by Mary at Jesus’ birth and again at his death.
    “God is too wise to be mistaken
    God is too good to be unkind
    So when you don’t understand,
    When you can’t see His plan,
    When you can’t trace His hand
    Trust His heart”

  11. Karen W. Reply

    Ella, We enjoyed that video so much! My daughter Olivia, age almost 6 1/2, had to lick her lips as she watched it! She and I have made mini pizzas too! And I loved it when you mentioned that your favorite was snacks like Goldfish, because Olivia had just talked me into buying Goldfish today at the grocery store, saying, “Goldfish are amazing!” I don’t know how I’d show it to you, but I made a little video of Olivia watching the end of your video. She pointed out that your cousins were going to get to help, and when I asked if she wished she could help too, she said “Yes!”

    And to your parents, thank you for the article and sentiments presented. My husband and I felt very much the same way when Olivia was born (except in our case, she was our 6th child, so we had experienced parenthood with the usual number of chromosomes before she came along). Blessings to you and your family! And Happy Birthday to Ella!

  12. […] A Story About Ella on her 10th Birthday […]... kevinathompson.com/syndrome-looks-like
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