What Age 13 Is Like for My Daughter with Down Syndrome

It seems like a few years ago, I was cuddling my small baby in her Noah's Ark themed nursery. It doesn't seem like this baby recently blew out candles on her chocolate cake in celebration of her 13th birthday.

When I held Jaycee in my arms years ago, I often tried to picture what her future would be like. I had many concerns and fears back. Now, I'm living that future. There is plenty of fun and personality in our lives, and fear and concern left years ago.

In true teenage fashion, my daughter has taken an interest in all things feminine. A few makeup supplies can into our house at Christmas. In a short amount of time, she has accumulated 5 tubes of lip stick, 4 eye shadow palates, powder, and blush. We had to carve out makeup application time in our morning routine. I don't wear makeup, so Jaycee has developed this interest on her own.

Similarly, Jaycee has decided she needs her nails painted and looking pretty at all times. She owns dozens of nail polishes and enjoys experimenting with different colors.

Jewelry is another interest of Jaycee's. A few months ago, she cried for a ring while we were shopping in Zales. Before we decided to spend hundreds of dollars on a ring, my husband and I purchased a cheap ring to test her responsibility with it. Jaycee has taken superb care of her now 3 rings and several bracelets. The more bling, the better!

Jaycee likes to carry a purse. She has a compact mirror and lip gloss inside of it. She has a wallet with her own money. Inside her purse, you may also find Peppa Pig or Frozen figures. 

When it comes to fashion, Jaycee loves to shop and pick out her own clothes. This is the child who hated shopping for many years much to my frustration. Now, I can't try on clothes without making sure I have something for her to try on as well. She wears mature looking sweaters that I would love to borrow, but she also has shirts with her favorite Disney characters as well. For the most part, I help her choose her outfits for school, since she doesn't yet understand the importance of dressing for weather conditions.

Like any other teen, Jaycee is interested in the phone. While many teens may be calling their friends, Jaycee will ask to call her cousin Gabby or grandma. Due to her limited verbal speech, Facetime is her primary way of communicating. She can sign or gesture to her family members on the phone on Facetime, and they can understand her much better. Texting or social media isn't an option since reading and spelling are both hard for her.

What about boys? Relationships are typically an interest of teenagers, but I can't tell if this is true for Jaycee. She loves everyone. She wants to innocently kiss and hug girls and boys that she likes. Friends and family members are all recipients of her acts of love. I don't see her interested in boys in a romantic way, but I'm not around her at school. Maybe I'm wrong. 

While many teenagers are asserting and gaining their independence. Jaycee is becoming independent too but in a different way. Jaycee is learning to do things on her own that other teens probably mastered years ago. She can shower by herself for the most part, but she needs help washing her hair. She hasn't yet mastered zippers, buttons, or tying her shoes. Our solution has been to avoid these when possible. Of course, she has the occasional teenage moment of slamming her bedroom door in anger to something I did. This rarely happens, but when it does, I feel like the mom of any other teenager. I secretly love it!

In short, Jaycee is much like any other girl turning 13. I'm excited to see her grow up and have typical teenage interests. Her speech, fine, and gross motor delays make her teenage years a bit different, but she is becoming her own young woman.

Years ago, I had a multitude of worries as I rocked baby Jaycee and fed her a bottle. Now, I sit with Jaycee on the couch holding a bottle of nail polish knowing that our future will be fun and bright.

Asthma, Social Workers, and an Unhappy Birthday

I'm not sure how special May 28th is to you, but it's important to me. It's the day when I turn a year older.

A couple of days ago, my age went up a year, and I spent time once again reflecting on my life. I couldn't help thinking about my birthday last year. It had a much different feeling to it.

I tell many stories in my writings, but I don't share everything. If something is painful or emotional, I wait months or years before I may decide to share that part of my life. Time has passed since my last birthday, and there is a story I am now willing to tell.

In May 2016, life was a bit chaotic. My family sold our house and moved into our new home. Much of May was spent on final touches, packing, unpacking, and all the other lovely things that go with moving. Add to that, Jaycee started to get a cold. Normally, Jaycee does a breathing treatment and an airway clearance treatment twice a day every day. When she is sick, this increases to every 4-6 hours-sometimes around the clock. For a person with obstructive sleep apnea, asthma, two repaired heart conditions, GERD, and a lung cyst, a cold can attack her lungs seriously. Therefore, I go into a heightened alert when she is sick.

I was on edge those first few nights in the house, since Jaycee was sick. Because Jaycee's communication skills are limited and she cannot do a peak flow meter which many asthmatics use, I am forced to rely on what I see and hear for myself. I also check her temperature, heart rate, and oxygen saturation levels throughout the day to see how she is trending. If she gets really bad in her chest, she may sign to me that her stomach hurts, as she cannot tell what is exactly wrong in her body. That is the only thing she may tell me in an illness, so I am left on my own.

My best friend in an illness, the monitor

Those first few days after the move, I was worried about Jaycee. I was monitoring her like crazy and hoping she could come out of this illness without a hospital admission. I had consulted with her doctor once about her breathing too.

Then at 2 am on May 18, Jaycee's breathing suddenly got worse. We went to a local ER. She was transported to a children's hospital ER. Then, she was admitted to the ICU for Rhinovirus with asthma flare up.

On the first full day in the ICU, a social worker came to see me. This is typical. Usually, they ask if I need anything like hotel information. They ask if we have transportation home and if our son at home is taken care of while we are away. This social worker visit was different.

I was taken to a conference room down the hall from my child. The typical questions started. Then it launched into questions about Jaycee's daily care. I recited her medicines from memory. She marveled that I could work and keep track of all of Jaycee's needs and appointments.

Then the questions were directed to the present illness. When did you take her to the doctor? Why didn't you take her back when she got worse? Did you give her this or that rescue medication? Did you try this at home? Why didn't you call the on-call pulmonologist? Where is your husband? Your daughter is in ICU, you don't seem very upset about it. Are you aware how sick she is?

This was a long conversation. By the end of it, I was convinced the social worker was going to make a hotline call on me. Had Jaycee had showed pneumonia, this conversation wouldn't have happened. But, because she merely had an asthmatic reaction to a virus, my parenting was called into question. Now, I wanted to cry and be upset. I called a few of my friends and Jaycee's teachers to prepare them to be character witnesses for me if the need came.

I am like my favorite Seinfeld character, George Costanza. I thought of a million comebacks and things I should have said after the conversation. One of these included: Maybe if your ER hadn't stopped the continuous albuterol that the first ER started that helped her...And maybe if your ER hadn't let her go hours without a breathing treatment to "see how she would do", she may be in a better spot right now. But, I didn't say it. Frankly, I had been up for about 30 hours straight before this and wasn't thinking sharply.

Fast forward a bit, Jaycee was discharged on May 23rd. (But not before the same social worker came by to tell me to take Jaycee to the doctor more often when she's sick.) A few days later, I had to do the usual hospital follow-up appointment with our local doctor. The NP we usually see was on vacation, so Jaycee was scheduled with another doctor who didn't know her or me. Let me insert here that I had to beg Jaycee to get out of the van to see the doctor and practically pull her inside the clinic building because she kept signing, "Doctor. Hurt. Scared." We were both anxious to be there, and my stress level was high from just trying to get Jaycee into the building.

The doctor had read the hospital paperwork and checked Jaycee over well. Everything was going well. Before we left, he said, "I see they gave you an asthma action plan. That's good so you'll know what to do next time."

To which I replied (in near tears), "She's had a plan for years. I know what to do. She gets sick very quickly. I can't change that."

I don't remember what happened next except I found myself at home crying.
I was exhausted from the hospital and post-hospital care, which included round-the-clock breathing treatments that I set alarms for and completed. I was trying to adjust to life in a new house along with the rest of my family. And, now two different professionals voiced their concerns over my ability to care for Jaycee properly in an illness. I wanted to curl up in bed and never come out.

A day later, it was May 28th. Happy birthday to me! I wasn't feeling it at all. I was stressed and anxious. I was sad and confused. My husband was off work for my birthday and offered to take me to my favorite restaurant. Jaycee was still doing breathing treatments but we were able to go quickly to eat between treatments.

I cried on the way to the restaurant as I told my husband everything I was feeling. The kids were with us, so it was one of those contained cries with a lot of heavy breathing to try to mask the crying. He was ready to go punch a few professionals for me, but he didn't. He told me not listen to them and began to detail all the many things I do for Jaycee. He assured me the hospital admission was not my fault, which I knew at one time. We sat in the Chili's parking lot waiting for me to pull it together so we could go inside and eat.

Me faking a smile at Chili's on my birthday last year

I ate the delicious Chili's skillet queso and looked at my daughter who was sitting in a restaurant and not a hospital bed. That was a reason to celebrate!

There are times in my life that I can't wait to be over. I am certainly glad those days around my birthday last year are history. I do many, many things for my daughter to help her progress and stay well. I felt horrible last year when I was given the impression that I had done something wrong. Fortunately, I didn't need character witnesses because a hotline call was never placed. But I was on edge for a few months hoping Jaycee wouldn't go back in the hospital for an illness and force me to meet with that social worker. (Thankfully, she made it almost a year before going back, and there was no social worker sent to question me!)

My birthday this year was much less dramatic. Thank God for that! This year, the smiles in the photographs were real, and it really was a happy birthday.

A Birthday Celebration

 A few months ago back in September, our daughter spent 3 weeks in ICU on a ventilator looking like this. We didn't know if she would make. In fact, there were moments when it looked like she wasn't. We were offered the chaplain and given offers to call our family in to see her.

 

We prayed. We hoped. And things finally got better. 

 

 

 

And here is Jaycee now. Celebrating her 8th birthday on February 17th. This has been a birthday with many reasons to celebrate. We are so thankful to be celebrating her birth, her life, and her future!  Happy Birthday, sweetie!