The Story of Down syndrome For Us

It’s just an extra 21st chromosome. One piece of genetic information that seemed at one time to define my daughter. Down syndrome was a huge and overwhelming diagnosis back in 2006 when Jaycee was born and diagnosed.

Time has passed, and my attitude has changed since her birth day. Down syndrome is just part of her story and ours. It is not THE story.

Here are 21 moments from the story of my family's life with Jaycee in honor of World Down syndrome Day.

1.      First ultrasound picture…It was a glimpse of my first-born with knowledge that a daughter was in our future.  

2.       Snuggles after delivery…Before we knew about Jaycee’s Down syndrome and AV canal, there were a few hours when my husband and I just marveled at our new baby without worry. We examined every finger and smiled at every movement and sound.

3.       A doctor's announcement…After waiting 4 long hours during Jaycee’s open heart surgery, I was relieved to hear that the surgery went as planned and all was well with our infant.

4.       First wobbly steps…In a physical therapy session, Jaycee took her first little steps. All those hours in therapy sessions and hard work paid off!

5.       Walking for Down syndrome…Our family teamed up to raise money for our local Down syndrome group and participated in an awareness walk. It would be the first of many times Team Jaycee united.

6.       The Best Word Ever…Is there anything sweeter than hearing a squeaky voice say your name? Nope, there isn’t! "Mama" melted my heart.

7.       First school drop off…Taking Jaycee to pre-school as a little three-year-old resulted in tears from one of us. I’ll let you guess who.

8.       Jaycee becoming a big sister…During my pregnancy with my son, I explained to Jaycee that she was going to have a baby brother soon. Right after Elijah was born, Jaycee came into the hospital room to meet him. She signed “baby” as she peered into his bed while the nurse weighed and measured him. She instantly loved him!

9.       Self-feeding...After months of occupational therapy, hand-over-hand spoon feedings, and trials of many spoons, the day Jaycee fed herself with a spoon was cause for celebration. We could eat together as a family at the same time, and she could be more independent.

10.   Second first steps…After a long and serious stay in ICU when she was in first grade, Jaycee came home depending on a wheelchair. She could not climb steps. She could not even sit up unsupported. When her strength came back slowly and she started walking again all the time, it was a gift to watch. 

11.   Jaycee, the competitor…Jaycee loved participating in the softball throw at the track and field games for our state Special Olympics competition. She kept looking at those of us in her cheering section to make sure we were all paying attention.

12.   The 3 big words…”Love you, mama!” After weeks of breaking up this phrase into simple word approximations, Jaycee one day repeated it back. It sounded like “Uh oo, mama,” but it was the beginning of this beautiful exchange we could have.

13.   School dancer…After some bravery on my part, I signed Jaycee up to participate in the yearly school fundraiser cheer leading and dance group with her peers. Jaycee knew the moves and proved she could do amazing things if I didn’t limit her.

14.   Elsa and Anna…Jaycee was fortunate to receive a trip through Make-A-Wish, which meant she got the royal treatment at Orlando theme parks. She absolutely loved meeting the Frozen cast after a show; her joy was precious.

15.   A lifelong relationship…At a family get together, Jaycee marveled at her cousin dressed up as a deer. From then on, Jaycee fell in love with her cousin, who she referred to as “Deer” ever since.  

16.   A pep rally…Jaycee’s school held an energetic pep rally for the athletes participating in Special Olympics. Jaycee ran through the lines formed by smiling cheerleaders. Instead of bursting through the paper banner at the end of the cheerleaders, Jaycee crawled underneath it. It was such a funny moment!

17.   A friend party...When your elementary school daughter wants to have a birthday party with friends, you make it happen.

18.   A Baptism…After weeks of teaching and preparation, Jaycee went through the water baptism at church like any other child. She came up out of the water smiling, just like all of us who were surrounding her.

19.   My daughter on stage…During a pageant for girls with intellectual disabilities, I saw my little girl transform into a princess and enjoy being in the spotlight. Her abilities were celebrated, and she continues to show off her crown to visitors at our home.

20.   Water coaster Enthusiast…Water coasters exist and my daughter loves them. While I scream my head off wishing for the ride to come to the end, my daughter shows no fear and laughs all the way through.

21.   Home plate with Molina…When Jaycee won an opportunity to meet Yadier Molina during a Cardinal’s game through our Down syndrome Association, there were several seats filled with our friends and family cheering for her. Molina autographed her baseball right after she did.

Our life with Jaycee has set us on a path we did not anticipate. Then again, who could predict some of these moments we have had with Jaycee. Some of them have been extraordinary, a few have been challenging, and others have been gratefully mundane.

Time has shown us that there is a full and good life beyond diagnosis day. Happy World Down syndrome Day!

My Emotional Attachment to Stuffed Animals

I have a problem. It's a strange one.

I have an emotional attached to several of my daughter's stuffed animals.

There. I said it. Now, let me explain.

I was cleaning Jaycee's room recently. I noticed her pile of stuffed animals was seriously getting out of control. The problem was that I couldn't bear to part with any of them for one reason or another.

There's this one.

What's so special about this dog in a pink nightgown? My husband and I "made" this puppy for Jaycee at a store in a mall that allowed you to stuff your own teddy bear. Jaycee was a few days old and in the NICU when we purchased this. We left the hospital to take a much needed break and decided on a whim to build this dog for her. When we picked out a heart to place inside the dog, I remember I wanted to cry. It held such meaning to me because we had just learned Jaycee had a large hole in her heart and was in congestive heart failure. We both said a silent prayer for her heart as we placed it inside. How can I say bye to this dog?

This soft little panda bear is another item Jaycee received as a newborn. A sweet lady of faith named Betty brought this to Jaycee after she got home from the NICU. Betty also had pizza for us which we ate together. Jaycee loved looking at this bear as a baby. This bear has stayed with us all these years. Betty has went on to Heaven, but her gift remains with us. 

And there's this one. Yes, it is a bit on the ugly side, but his body is shaped like the heart. His name is Snerdlihc, which is Children's spelled backwards. Jaycee received this from the hospital when she was 3 months old and having her first open heart surgery. Because it's a reminder of her mended heart, I have not been able to let go of this little guy.

This cute little teddy bear is another one that I just can't part with. Jaycee's grandma Ramona, who passed away a few years ago, bought this for Jaycee during her hospital stay for her first open heart surgery too. I had mixed feelings about this bear at first because it reminded me of the hospital, which I wanted to put behind us. Over the years, there have been so many hospital admissions that this bear became more a tribute to the doctors that have helped Jaycee time and time again.

This little puppy is from one of Jaycee's hospital stays for a respiratory illness. I played Bingo for Jaycee in the hospital to win this green puppy, which is Jaycee's favorite color. I felt so good winning this after having such a crummy day watching Jaycee struggle. And for that reason, this green puppy is still around.

Isn't this praying little lamb sweet? A friend of mine named Brandi came to visit Jaycee while she was in the ICU once. She sat this lamb on Jaycee's bed and explained that her daughter wanted Jaycee to have this lamb. She told how the lamb had been with her daughter when she was in the NICU. Not only that, the lamb had comforted her nephew in the ICU too. This lamb has helped three kids who left the ICU, so I can't let go this special stuffed animal either.

We picked up these two friends during Jaycee's Make-A-Wish trip to Florida. These were gifts to Jaycee while we stayed at Give Kids the World Village. That trip was absolutely amazing!! Mickey represents the Disney portion of our trip while the bunny (Mayor Clayton) reminds me of the village. I have many, many keepsakes from that trip two years ago, and I suspect that these will be around for awhile.

Meet dog and cat. When Jaycee was in the ICU once, she looked really sad. There was absolutely nothing for her to do but lay in bed and watch movies. Since we left for the hospital in a hurry due to her illness, I did not pack anything for her to cuddle. Off I went to the hospital gift shop to buy an animal for her to hug on while in bed. I picked up the cat, since we had cats at home that she loved. Jaycee's grandma Diana came in to visit bringing the dog. I told Jaycee she would have to keep the dog and cat from fighting and pretended to make them fight. Over the next few days, she would have the cat and dog fight each other in her hospital bed. It was super sweet to see her repeat this action. These two fighting animals are still around causing trouble.

I am guessing that I have provided adequate evidence as to why my odd emotional attachment to certain stuffed animals exists. These are just a sampling. Sadly, there are more in our home that have a story or memory tied to them. So, I keep filling drawers, toy boxes, and shelves with these treasures as they represent challenges she has overcome, people who have showed her love, or moments that brought joy. Who knew stuffed animals could do so much?

No More Tears

Sometimes I am a cry baby. I hate when that happens to me. 

If you would ask me to give a detailed recollection of Jaycee's delivery and the moment I got her diagnoses, then I would probably cry or at least fight back the tears.

I have had to publically tell this story on a few occasions, and I had to rehearse the story several times in order to detach from my emotions. Once, I had to give my story spontaneously in a group setting, when the emotions of my story overtook me. I had to pause because I was crying so hard. Yikes!

I was embarrassed that I was crying about something, that at that time, happened 6 years ago. I was also frustrated that I seemed stuck in the despair in that moment. Yes, that moment in my life was sad, unexpected, and emotional. However, I have moved on. I'm not that scared new mom who is upset that her child has Down syndrome and a heart condition. But, I feel like when I cry while retelling the story that I really haven't moved on. I ask myself, "What's wrong with me?"

I've had a similar reaction to Jaycee's serious illness in 2013. She almost died last fall from septic shock and heart and lung failure. It was a scary 4 weeks in the hospital with Jaycee on a ventilator for 3 of those weeks. There were so many scary moments. There were a few times when Jaycee had sudden worsening of breathing or blood pressure drops. The doctors would rush in. Alarms would go off. I looked in horror. My body had a physical reaction to the stressful situation: My heart raced. My body had shakes that I tried to fight off so the medical people wouldn't notice me being so afraid. I would get really hot or really cold. As a parent, this was my worst fear possibly coming true. But, it didn't. After 4 weeks of hell, the story had a happy ending.

Still, there have been times in the past few months when I have thought about the time when she was in the hospital or had something trigger a memory of that illness and I have cried. Sometimes, it has been a soft whimper and sometimes it was sobbing. I taped a video recording of this testimony for church (after rehearsing), but I wouldn't dare talk about this story in public yet. It's too fresh. The memories are too emotionally powerful. When they played the video testimony at church, I needed those Kleenex stuffed in my pocket!

After crying my way through the church viewing of our testimony, I thought again, "What's wrong with me?" The story has a happy ending. Why can't I focus on the happy emotion? Don't get me wrong. I am happy, but the tears seem to erupt out of deep rooted pain in my soul.

I think part of the issue in both situations was that my joy came back over time; it wasn't instant. The fear and the panic was instant and powerful. It was a strong emotion in an unexpected time. Those feelings became associated with those memories. But, those negative feelings are not from God. If they aren't feelings of God, then they are a hindrance to me.

I started praying about my memories. I want to look back on times like with the attitude of, "Wow! That was bad but man we made it! Thank God," with nothing but joy in my heart. I don't want to cry out of the memory of the fear. If someone asks me about these tough situations, I want to share my story of strength and courage, giving God glory instead of some person who appears weak and defeated by the fear from that moment. In other words, I want the tears to stop. I want those fearful and painful feelings from the past to be in the past. I want my current feelings of relief, thankfulness, and joy to be ones coming through.

I have been praying that God would help take away those feelings that aren't of Him and that only Godly feelings of joy and triumph are left. So, that's my new motto: Just say no to tears!