10 Things I Never Expected to Do As a Parent

When I was pregnant with my first child back in 2006, there were things I expected to happen. I expected diapers, crying, toys everywhere, the occasional sniffles, first day of school, family pictures, etc. I got that and so much more. The labels of Down syndrome, AV canal heart defect, Wolff-Parkinson White syndrome, asthma, sleep apnea, GERD, and lung cyst all brought unexpected things to my parenting experience.

As I measured the bald spot on the back of my daughter's head last night to see if it was getting larger, I thought, "This is something I never expected to do as a parent!" And yes if you are curious, it was a half centimeter larger than a few weeks ago.

Here are 10 things that I never expected to do as a parent:
-Choose my daughter's hairstyle based upon a bi-pap mask. If her hair gets too long, the mask doesn't seal as well. Plus, the headgear makes wrinkles and uneven waves in her hair. That's why short hair is the best style for her.

-Leave a pharmacy with a bag full of medicines for my child every month.

-Arrange my daughter's furniture in her room based upon her medical equipment and outlet locations. Her bed has to be near an outlet for the bi-pap and nebulizer. Her chair must be close enough to another outlet for her airway clearance machine.

-Wonder if my child was going to die. Yep, I never expected that one. But more than once, a bad news talk from a doctor left me wondering what was going to happen and praying Jaycee would live.

-Buy diapers for 9 years and counting for the same child. Thankfully, she just needs them at night.

-Carry a bag with a change of clothes for my 9 year old when we go out. Now, her accidents are rare, but they can be expected if she's in unique or stressing situation.

-Perform so much therapy on my own child. As a speech-language pathologist, I never imagined using my training in language, apraxia of speech, and feeding treatments on my own child.

-Interpret my child's attempt at communicating with others for years. Around me, Jaycee uses many signs, gestures, and some word approximations. I never imagined being an interpreter for my 9 year old child, but I'm happy to do it.

-Dread a phone call from my child's teacher so much. Due to Jaycee's breathing issues, I hate to see the school show up on my caller ID. Let's face it, school professionals usually don't call with good news, but I'm worried a call from them means Jaycee's breathing is in trouble.

-Be so proud of someone who doesn't achieve the typical things. There's no "My kid made the honor roll" celebration or a high five because she made a sporting achievement. No, but I'm proud. Proud of her efforts. Proud of any attempts. Proud of her Special Olympics competitions. Proud of her trying to write her name. Proud of her for saying her 15 words. Proud that she can put soap in the dishwasher. Small victories make me proud.


Maybe parenting Jaycee hasn't been everything I expected. But, that doesn't mean that it hasn't been worthwhile and fulfilling. The truth is...I like being Jaycee's parent.

The Story Your Body Tells

My sweet Jaycee,

I'm not sure how much you remember about all of your medical experiences, since you aren't able to tell me. But you can find reminders all over your body.

Your eyes-They are bright and beautiful. When you look closely, you might be able to see the fine scar in the corners of your eyes from your two strabismus surgeries. These scars will go unnoticed by most people, but I see them because I was there when it happened. I remember the short surgery, your recovery, and putting in the drops afterwards. You looked so cute leaving the hospital in your sunglasses after the surgeries. Because of this surgery, your eyes are able to stay straight and don't turn in now.

Your chest- You might notice a scar that looks like an exclamation point. If you look closely, will see that there are actually two of these nearly right on top of each other. These scars are from your open heart surgeries. You were so tiny at 3 months old when you had your first heart surgery to fix the hole in the center of your heart. You were so little and not everything could be fixed perfectly that first time, so you had another surgery when you were 2. It was so hard to see your new scar but I knew it was necessary. Your heart had to be fixed so that you could live and have a better life.

Your neck- There are three noticeable scars on the right side of your neck. Two years ago when you were really sick in the ICU, you had to have a central line in your neck to help monitor your vitals and get medications into your body while you were on the ventilator. You were so sick with septic shock, acute respiratory distress syndrome, pneumonia, and rhinovirus. We weren't sure if you were going to make it through the illness, but you did. Sometimes, people ask me about the scars on your neck. I get to tell them how you were in a fight for your life and you won.

Your wrist- Right now, you might notice the red tiny marks on your wrist that will surely leave a scar. Just a couple of months ago, there was an arterial line stitched into your wrist so the doctors could monitor your blood pressure. You were very sick. You were on the ventilator, had pneumonia and rhinovirus, and were in respiratory failure. Your body was having trouble regulating everything because you were so sick. Being able to monitor your blood pressure accurately was essential when it was dropping so low. These tiny marks show off another victory you had in a health battle.

So Jaycee, the marks on your body are reminders for you. I don't want you to be sad when you see these reminders on your body. Instead, I want you to be proud and thankful. You have overcame so much. You have had to fight for your life. You have endured things that most people will never have too, yet there is a smile on your face. Your story is amazing and is worth telling!

Love-
Mom

 

What Jaycee's Professionals Did Right

Over the years, a variety of teachers, therapists, and support staff have played a large part in Jaycee's life. She began therapy in early intervention when she was 2 months old. After early intervention, it was pre-school and later/currently elementary school. Besides summer breaks and illness related pauses, Jaycee has been heavily involved in school or therapy all her life. Jaycee has had roughly 9 years in programs. I have had 9 years experiencing life as a mom of a child in therapy, which is much different from my usual professional role as a speech-language pathologist.

I have written other articles offering tips to professionals based upon my experiences with Jaycee. That was mainly negative experience based. So, I'd like to offer the flip side of it. There are things that some of Jaycee's professionals have done right over the years.

Open Communication:
Jaycee can't tell me about her day. She can't answer questions or let me know if something happened. She can't tell me if she had therapy today and how it went. So, that is why I have truly appreciated those professionals who have been her voice to me. Some have sent me text picture messages or emails of something cute or funny that involves Jaycee. I have loved communication notebooks that have allowed information to pass between the teacher and I without feeling like I'm bothering someone or forcing someone to report to me. A therapist who sees me in the hall and actually talks to me for a minute or two about what is going on has been great too! Open communication may seem like a no-brainer but trust me, it isn't! 

Acts of Care:
When a professional goes out of their way to show they really care about Jaycee, it is an amazing feeling. The professional who gets her a Christmas gift or a get well soon gift shows that Jaycee isn't just a student to them. The professional that asks me how Jaycee is when she's sick or who checks on her when she's had an appointment shows me that Jaycee matters to their life. The teacher who had classmates make Jaycee get well cards showed me she was an important part of the class. It's great to know people care.

Demonstrates Patience & Respect:
I know Jaycee can be a challenge. I know there are some days that are just plain hard. So, I really appreciate those who can get over the hard days quickly and move on. I like when people can talk about Jaycee's problems and issues by describing the problem without anger or attitude. I like when people don't call her stubborn and some other negative adjective when she acts up. I know Jaycee isn't always easy but I love the professionals who can deal with the behaviors with patience.

Sees Jaycee as A Whole Child:
Jaycee isn't just a child with Down syndrome and educational needs. She has many medical diagnoses, which affect her everyday. Her medical issues have to be factored into her school life. I appreciate when professionals understand Jaycee can't be outside because of an extreme temperature and make accommodations for her to keep her lungs safe. I also appreciate when the professionals don't make me feel bad when Jaycee misses school or appointments due to her health needs. She's sick often. I can't help it. She can't help it. When she's sick, school takes a back seat, and that is just the way her life is.

Seeks My Input:
I have loved it when professionals have included me in conversations about possible goals for her educational plan. A few therapists always call me or email me before Jaycee's annual meeting to check in with me and to talk about the plan for next year. I like feeling that I'm an important part of the process since I am a big part of her life. I love feeling like my opinions matter in the big and small things. After all, in a few years, they will be with different students and I will still be with Jaycee.

Understands Jaycee is Part of a Family:
This may sound like an unimportant point, but hear me out. It's easy to tell someone to do a therapeutic activity or school homework but sometimes it just nearly impossible. It is really important for teachers to understand our family routine and Jaycee's medical requirements. For us, we get home by 4 pm. That gives us 4 hours to eat dinner, do 50 minutes of treatments, bathe, and relax a little before Jaycee heads off to bed. But, Jaycee isn't the only person in our home. Jaycee's brother has needs too. I have often have paper work from my job to do at night. If my husband works overtime, I'm juggling all of this on my own. So sometimes, there is nothing that important from therapy or school for me to feel like conquering when the family is all home at night.


I'm so thankful for all the teachers and therapists in Jaycee's life that have shown me that Jaycee can be well cared for by someone other than myself.

Looking Through the Right Lens

Remember these glasses from the movie National Treasure? Really, I didn't like that movie but I have seen it more than once because of my husband. In it, Nicholas Cage uses these glasses to read a secret message to find clues to the treasure. Later he discovers that by switching the red and blue lens more of the message is revealed helping him find his way to the gold and gems.

These glasses remind me of how I view my own life and circumstances. If I look through the clear lens and see my reality, it gives me only one perspective. But by adjusting the lens, I can see more and more.

Here's an example. When we got home from the hospital last month, I was immediately in my post-hospital funk. That was Jaycee's 21st hospital admission for an illness or emergency. (That doesn't count surgeries or admissions for tests.)  After 3 weeks of being away from home, I was exhausted and stressed from her hospital stay.

When I'm in the hospital, I'm just reacting to circumstances and trying to make it through the day. When I get home, I start to really fully process everything that has happened. I think about the tubes, the bad news talks from the doctors, and the scares Jaycee just survived. There's sadness that this happened again. There is also a sad reality that this probably won't be the last time she's ever in the hospital. It's never easy even after 21 times, though it does get more familiar.

I was in a teetering position when I got home from the hospital...feeling so isolated, feeling like no one has our problems, feeling on the verge of depression. But there was also a feeling of gratefulness that she had survived again, and I still had my little girl. I wasn't sure how to resume life again after another trauma in the ICU.

The reality of the first look through my glasses said...life wasn't good. I don't have much to be happy about.

But, then I did a smart thing. The first time I went back to church after her hospital stay, I asked someone to pray for me, because I didn't want to stay looking at my situation through this lens.

So I did. I didn't feel any differently when I walked away from the altar, but I did get some good encouragement from that prayer partner. The next day, the lens changed though. I was able to see things through a different perspective.

I didn't feel sorry for myself anymore. I didn't have the urge to hang on to depression and to the negativity. The lens has changed for me even though nothing in our situation changed.  I could see something differently that I couldn't before. I didn't have to be afraid of future illnesses. I also didn't have to meditate on those traumatizing ICU images that tried to appear.

I was happy. Happy Jaycee was alive. Happy we all survived. Thankful that we made it through number 21. Encouraged to enjoy the days we are given.

I'm so happy God can help get us looking through the right lens to see the treasure in our lives!