My Worst Day with my Daughter with Down syndrome

I have had some hard days with my daughter with Down syndrome over 11 years.

You may think the worst day with her was the day she was born when I was told she had Down syndrome and an AV canal heart defect. That was a chaotic and scary day, but it had some joyous times too. No, that day wasn't my worst day with her at all. I was happy to be a mother for the first time!

You may think the worst day was the one that I handed my 3 month old baby off to a surgical team for her first open heart surgery. That was a hard day. The day she was 2 years old and it happened again was another rough day filled with anxiety. But still, it wasn't the worst.

Perhaps, you think it was the day I walked Jaycee into school for the first time. Alright, none of you probably thought that. Letting go of my tiny 3 year old's hand did require a new courage from me though, but no- that wasn't my worst day.

You may think that our worst day together was the day Jaycee hemorrhaged at home after a surgery when she was 3 years old. Yep, that was a really terrifying moment that caused panic, but not the worst.

You may think the worst day was when I saw a group of girls roll their eyes and "play" run from Jaycee. That day sucked, but I made it through it. Jaycee never caught on to their games, which made it better in some way.

I'll spare you of any more possibilities. Let's get to it.

The worst day was the day that my daughter was on the verge of death. It was a little over 4 years ago when my daughter was sleeping in an Intensive Care Unit's hospital bed sick with pneumonia. Without warning, her blood pressure dropped and a herd of doctors scurried in the room. Multiple IVs were started to push fluids. I left the room in a puddle of tears as Jaycee was being placed on a ventilator (something she needed for 3 weeks). Hours later, Jaycee was somewhat stable so I could finally see her again. As my husband and I neared her room, two doctors met us at her doorway. We were told Jaycee was in septic shock, in cardiac failure and pulmonary failure, and not doing well on maximal support of the ventilator. We were told she may not make it. We were asked if we wanted to see a clergy, and we were encouraged to call close family in to see her.

I walked into her room, which was filled with IV pumps and machines. I held her hand. I prayed with her. I told her to fight. I stared at her monitor and willed the numbers to improve. I jumped with every alarm and held my breath until it stopped. My husband did the same thing.

This was by far the worst day with my daughter. It had little to do with her Down syndrome and more to do with crummy lungs and a perfect storm of complications. For three weeks, Jaycee's life was in limbo. I prayed and pleaded for her to live. That might surprise some people. Some people may think I'd be better off not having a child to care for the rest of my life. But, they don't know the love I have for my child. I wanted her to live more than ever. Her life was worth it all, and I wanted nothing more than to see what her life could become.

Four weeks later when Jaycee arrived home in a wheelchair, it felt like the best day in the world. It felt like a miracle. It was a miracle!

Life is sometimes hard and unpredictable. It's not easy having your child endure multiple surgeries, complications, and rough spots in life. But, my worst day with Jaycee taught me to appreciate all the other days with her more. Her life is precious. I've never forgotten that since that "worst" day when I almost lost my sweet little girl. Glimpsing into death really did teach me not to take her life for granted. I hope I never do...

This post is written for Down syndrome awareness month, which is an opportunity for bloggers to write all 31 days in October for Trisomy 21 awareness.