Tuesday, December 29, 2015

God, Baptism, And the R-Word (2015 Blog Review)

This year is almost over, so it's time to take a look back. Thank you to everyone who has read the stories about my journey as a parent over the past year. Today, I'll highlight the top three blog posts I had for the year just in case you missed them.

Before we get to the top three, let's review my favorite post of the year:
Does God Make Down syndrome?
I spent months and months writing this post. I wrote and rewrote, put it aside for a few weeks, and then added some more. I wanted to put into words all the thoughts I had whenever someone tried to explain to me that my child with Down syndrome was made by God. I didn't care what people had to say. I cared most what God and His word has to say. This post was a compilation of all the thoughts I had on this subject over the years. After I hit "publish" on this post, I had a stomach ache. I didn't know how it would be received and if I articulated my point of view well enough. But, I believe it was understood. Now, it is one of my favorite posts, but it didn't make the top three for the year.


Coming in at number 3 for 2015 is:
Where Is God When
This post too took some writing and rewriting. It came from a thought I had many times as a parent watching my child go through illness, surgeries, and indescribable things. I think it's human nature to wonder where a loving God is when there is heartache all around. It also seems to be human nature in trials to discount the "little" moments where God seems to be trying to answer that question for you.



#2 for the year is
Why I Cringe at the R-Word
The motivation for this post came from hearing the r-word in conversations between people. It's amazing to hear the situations and scenarios that people use the r-word as a descriptor for. It's frustrating as a mother of someone with an intellectual disability to hear that word thrown around. This post was me trying to describe why the r-word is a dig at people like my daughter and why she deserves more respect.



And the most popular post of the year was:
To the Pastor who Baptized my Daughter
I was so happy to share this post in celebration of Jaycee's 1 year baptism anniversary. That day was so special to me as a mother and a Christian. I was extremely glad that my pastor was willing to baptize Jaycee given that she didn't fit everyone's criteria for it (being able to verbalize her belief in Jesus/salvation). I'm glad this was the blog's top post for the year since it was a special day for our family.



Thanks for reading!! Hope to see you back in 2016!


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Tuesday, December 22, 2015

All She Wants for Christmas

"What do you want for Christmas?"

It's a common question that children are asked this time of year. And it's a question that Jaycee can't really answer.

We use total communication with Jaycee. That means we encourage Jaycee to communicate in any method she can whether it be sign language, gestures, words, or using her communication device that we call her talker.

Here's how our Christmas conversations typically go.

Me: "Jaycee, what do you want for Christmas?"

Jaycee: "Merry Christmas!" (on talker)

Me: "Yes, what do you want for a present for Christmas?"

Jaycee: "gift" (on talker) "me" (pointing to self)

We rarely get an actual answer to the question except when I cue her to the button on her device that says, "I want a singing Elsa doll, Peppa pig movies, and time with my cousin Gabby for Christmas." But I programmed that on her talker button not her. Does that count?

What Jaycee really wants is a mystery. She cannot tell me. The best answer I get is when I take her to the store. She loves to browse the toy aisle. The toys with characters she recognizes grabs her attention. She picks up toys, usually ones that makes music or noises, and then puts it right back on the shelf.

"You can have that. Do you want it?"

I gesture that she can put it in the cart if she wants it. But she hardly does. What does she put in the cart instead? Things she already has. A stuffed animal, movie, or toy she already has at home is what she gravitates toward, things she's familiar with.

"You already have this! Pick something else," I say in exasperation.

Then eventually, she will add a new toy to the cart. Success!!

And now there's a conflicting thought. I wish that Jaycee could just answer a simple question. Well, I wish she could understand the question. I wish she wanted something, and I wish I knew what that was.

On the other hand, Jaycee has a better attitude about Christmas than anyone I know. She doesn't care about the things she's going to receive. She doesn't sit around and ask me for toys advertised on commercials. Jaycee would be happy with anything she gets. She also loves going to family parties and cries when we leave. Her eyes light up when she sees the dessert table and enjoys everything she eats. She enjoys every minute of Christmas from the lights to the family meals.

That attitude is something we should all want for Christmas!







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Tuesday, December 15, 2015

When I Encountered the Disability Police

I have read stories on the internet about people being questioned about their use of a handicap placard. I wondered if that would ever happen to me and what my response would be. A couple of months ago, that moment came and here is my story.

I was grateful to find a handicap spot open at a grocery store I was about to enter with my two children. Can I just say it's a workout to shop with my daughter Jaycee? Jaycee can walk, but we use a medical stroller for long distances. She has Down syndrome, asthma, heart problems, a lung cyst, and obstructive sleep apnea to name a few of her problems.

Pushing 100 pound child in a medical stroller and pulling a shopping cart behind you isn't easy. I had a cart full of groceries, and I was ready to head home. I packed my groceries and Jaycee’s stroller in the back of my van. I had just seated myself inside my van when an elderly man approached.

He tapped on my window, which I partially rolled down not knowing what he wanted. He said, "Obviously, you aren't handicapped and have no reason to park here." I guess he didn't see Jaycee's stroller nor my shirt that said "Special Olympics" both of which should have been clues.

I said, "You're right, I'm not handicapped but my daughter is." I rolled down her window so he could see she had Down syndrome. He then said, "Well I'm sorry. You can park here but you know people do park illegally sometimes. My wife uses this spots and needs them and I watch for people who park illegally. I saw you get into your van so nimbly I knew you weren't handicapped."

I said....starting to get emotional because I hadn't done anything wrong but this guy is still giving me a speech..."The placard is for my daughter. She does have a disability not to mention she's been in the hospital numerous times."

He started in on his speech again refusing to fully acknowledge his mistake. He asked if I had left Jaycee in the car since he didn't see her get in. I wanted to laugh in his face. I can barely leave her unattended at home; there was no way I can leave her in the van while I grocery shop.

Finally, I said something else like "Ok but I am legal" and rolled up my window and left, since he was still lecturing me about parking space misuse.

Then I got to explain to my six year old son why what he called a “mean man” was talking to us.

So what do you do when this happens to you? I struggled to find the words in the moment as I just completely caught off guard on a simple grocery trip. Should I write about it on my blog? That would seem like preaching to the choir. After some thought, I decided to write a letter to the editor of the newspaper in which this event occurred. This letter actually ran in two local papers. I’m hopeful that this saved another mother with a child with a disability from an encounter like this.

 

 

Editor:

My 9-year-old daughter has Down syndrome. She has other health problems that aren’t noticeable. These invisible problems have resulted in 21 hospital admissions and a wish from Make-A-Wish.

In Mt. Vernon (last) weekend, I loaded my groceries and my daughter’s stroller in my van, which was legally parked in a handicap spot. The handicap placard hung from my mirror belonged to my daughter.

A gentleman knocked on my window, pointed to the placard, and wanted to know why I was parked there because I didn’t have a disability.

I explained it was my daughter’s. He said “sorry,” but explained how he finds people parking illegally and figured I was too. He told me how his wife uses these spaces, and he gets upset when he sees misuse.

I explained I was legal, because my daughter has health problems. This man insisted that people park illegally often. Honestly, I have no idea.

Being a speech-language pathologist for the past 11 years has given me a different perspective. I have worked with children who look fine when they actually have significant developmental delays or medical issues. The man who wrongly accused me is motivated by his wife. I am motivated by my daughter.

For that reason, I’ writing to remind people of the vast array of disabilities that are represented by the handicap placard. They aren’t just for the elderly. Parents who are transporting their children can rightfully obtain and use them.

Some disabilities are obvious and others are not.

Evana Sandusky

 

 


Jaycee in her medial stroller this summer.

 
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Wednesday, December 9, 2015

When You Need Plan B

Plan B, the backup plan, is common at our house.

I hate Plan B, but we find it necessary in our lives. Plan A is always the best plan, which is why it is the first plan after all. But, when it falls through for one reason or another, I like to have a back up plan.

Here's how things typically go with us. We plan a trip on a certain day. Once the date is set, we always have a back up date in mind just in case Jaycee gets sick. Then we wait and see what happens.

Here are bigger things that have happened in the past that didn't work out:

When Jaycee was a toddler, we were so excited for her to be a flower girl at a destination wedding in Florida. Then, she came down with pneumonia the day before we were scheduled to leave. Should we take our daughter on a long trip far away from home and her doctors? Plan B went into action. My husband went to the wedding to fulfill his duty as a groomsman alone while I stayed home and nursed Jaycee back to health.

Two years ago, Jaycee spent a week in the hospital. She was discharged the day before Thanksgiving. So Thanksgiving had to be different that year. We didn't go to any of the three family events that we typically attend during Thanksgiving. We stayed home recovering from the hospital, doing medications every couple of hours, and allowing Jaycee to rest. Plan B became a couple of family members bringing Thanksgiving dinner to us to eat at our home.

This summer, we planned a short family camping trip and vacation to Branson. We planned it in June when Jaycee typically has good breathing. But, it was canceled because Jaycee was in ICU when we should have been leaving. Plan B became a camping trip at a campground close to our house a few weeks later. It wasn't ideal but it was something. Actually, we ended up having a Plan C for this too. Just last weekend, six months after the first trip was planned, we made it to Branson. We had 48 hours to cram in all the fun we could before driving back home. It wasn't the original plan but it was better than nothing.


Forget the big things though, we often have a Plan B for little things. That looks like this:

We will take Jaycee in the store, but if she starts to act up, my husband will sit with her in the car.

We will make plans to go out for dinner but freezing cold air moves in forcing us to keep Jaycee indoors.

We go to church every Sunday together as a family. If Jaycee has a cold symptom, then we have to figure out which of us will stay home with her and watch the sermon online later in the week.

When Jaycee was younger, her health prevented her from playing in the snow. Plan B was always bringing in a bowl full of snow for her to play with and experience.


Plan B is something that many of us that have children with medical or developmental issues have to face more times than we would like. The truth is that sometimes it sucks to do Plan B. But, it is something that comes with having children. I have learned to be appreciative when Plan A actually happens and to learn to be satisfied when Plan B has to do.
Jaycee at Ripley's in Branson during our second attempt at going to Branson.

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Tuesday, December 1, 2015

Lessons Learned From Oversharing With a Stranger

I had an encounter last week that I can't get out of my head. I was Black Friday shopping with my sister-in-law and mother. My sister-in-law has 7 children, and I have 2. Black Friday became the day we could spend together without any children, which is a tiny miracle. It's our day to shop, laugh, talk, and brag about our savings at Kohl's.

I was the first to finish shopping in a mall, so I took a seat on a bench to wait for the other girls. An elderly man soon joined me on the bench. He made small talk back and forth. Eventually, he asked me about my family.

"I have a boy and a girl. My daughter has a disability."

The man responded, "That's too bad. What does she have?"

"She has Down syndrome. My husband is home with her today while I get a break."

"Well, there's worse things to have," the man replied.

I continued, "Well, she has other problems too. She has heart and lung issues, and she's in the hospital a lot."

The man said, "That will happen with that sometimes."

"It's a bit more complicated than that," I replied.

Then the elderly man's friends started up a conversation with him, I went back to playing Candy Crush, and that's how the conversation abruptly ended.

I replayed the conversation over and over wishing it would have gone differently. What was I doing? Why was I trying to tell this guy about how bad off my daughter was?

My second thoughts were in frustration that I couldn't make him understand. I feel like when people hear a word like "cancer" or "cystic fibrosis" people tend to understand that these are more serious, life-threatening diagnoses.

When people hear my child has Down syndrome, they tend to think that it's only developmental in nature. For most people, it is. For my child, it goes way beyond Down syndrome. Jaycee has a very unique set of health problems of asthma, obstructive sleep apnea, recurrent pneumonia, frequent atelectasis, lung cyst, AV canal heart defect, GERD, strabismus, and Wolff-Parkinson White syndrome. I feel like when people see or hear about Jaycee, they aren't aware of the fact of how many times her life has been in jeopardy.

But why was I trying to convince a stranger of this?

I prayed. I talk to God about what happened that day. What was the point of that encounter? And what was I suppose to learn from this?

During worship in church a few days later, I got my answer. My mistake wasn't that I was trying to overshare information with a stranger. After all, it's hard to hide that part of my life that is so consuming. My mistake was how I tried to present it. Rather than trying to convince him that my daughter was worse off than he realized. I should have shared her problems in the context of a testimony and not as a 'woe is me' story.

It should have gone like this:

"I have a boy and a girl. My daughter has a disability."

The man responded, "That's too bad. What does she have?"

"She has Down syndrome and requires daily medical interventions for other problems. My husband is home with her today while I get a break."

"Well, there's worse things to have," the man replied.

I continued, "Well, she is our miracle child. She's been in the hospital over 20 times with a few scary stays in the ICU. God has watched over our little girl."



Maybe next time, I talk to a stranger, I will keep this in mind.



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Tuesday, November 24, 2015

Irritating Things I'm Thankful For


I don't like writing when I'm given a topic. I like to just write about whatever I have been thinking about for the past week. With Thanksgiving being this week, what kind of a person would I be if I didn't do a post about what I'm grateful for? I'm not even doing daily post on Facebook about what I'm grateful for. If I didn't write about thankfulness, it would just be a slap in the face to Thanksgiving.

I said a prayer asking God to show me what to write. This post was the response.


The NDSS reports, the life expectancy of a person with Down syndrome was just 25 years old in 1983. Today, the age has increased to age 60. Medical advancements have helped make this possible.

There are times when I get upset about the daily medical interventions we must do with Jaycee. But, God reminded me that the very things that sometimes feel irritating are the things I should be grateful for. They are helping to keep Jaycee healthy and alive.







Here's Jaycee's medications. Recently, medication number 10 was added. Instead of being upset that her medications keep increasing, I'm going to be grateful that there are treatments available for Jaycee.


Jaycee's vest airway clearance machine is next on my list. Twice a day for 20 minutes each, Jaycee uses this machine. I am thankful there is a machine that can help Jaycee's cough when her lungs are getting filled with mucus. I'm thankful this helps treat her lung cyst. I was thankful the day that our insurance approved this expensive machine, and I want to remain thankful.

 
This is Jaycee's nebulizer machine. When Jaycee started using a nebulizer as a toddler, I erroneously thought it would be temporary. It wasn't. Jaycees still uses this a minimum of twice a day. This little machine has become an important part of keeping Jaycee's lungs healthy. I'm thankful that Jaycee has this machine even though it eats up time every day.


Finally, this is Jaycee's bi-pap machine for treatment of her obstructive sleep apnea. Jaycee was just 3 years old when this machine came in our lives. For the last 6 years, this machine has dictated many things in her life in regards to when and where she can sleep. Yet, I should be thankful that Jaycee has a machine that gives her a way to breathe at night.
 
 
These medications and machines seem to limit our lives at time. Decisions about where we go and what we do cannot be made without factoring in these four items. Sometimes, this irritates me. But this Thanksgiving, I want to be grateful. I'm grateful these interventions are available to Jaycee to give her a better and longer life. 
 
Here's my challenge to you. Do you have something in your life that you need to have a different perspective about? Maybe something that irritates you is actually something you should be grateful for. 

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Tuesday, November 17, 2015

Your "Worst Thing"

Life is not always easy. In fact, sometimes it is just plain hard, not to mention unfair. We all go through things in our parenting life that remind us of this fact.

Parents often have an experience that they will describe as the "worst thing you can go through" as a parent. These experiences vary greatly. Some things people share as their worst seems like nothing to me. Other stories are unquestionably a candidate for the "worst."

Here's what I have come to understand. Perspective is everything.

When Jaycee was born and diagnosed with Down syndrome, congestive heart failure, and an AV canal heart defect. I can tell you that there were many things that were hard when she was born. I couldn't breastfeed as I had originally planned. I didn't get to bond with her like I wanted because she was in the NICU. And her Down syndrome was a shock. But the absolute worst thing at that time was Jaycee's heart condition and the worry that she may not live.

Over time, my idea of the worst thing you can experience as a parent changed. There were so many experiences I have lived through, and they each impacted my view on life. A miscarriage? It was a sad time, but not my worst. Jaycee's heart surgeries? Those were extremely stressful, but not my worst. Doing medications daily? Difficult but not the worst.

My worst? I have two.
1. One of the worst things I went through as a parent was when Jaycee got very sick, went into respiratory failure, was put on a ventilator with tubes and lines ran everywhere, and spent weeks in the hospital. There were so many times during the hospital admission that Jaycee gave us a scare, leaving me sitting in the parent lounge crying and praying for my child to live. Thankfully, she did. But this didn't happen once, it happened twice. Emotionally, I felt beat up after both events for a long time.

2. My other worst experience has actually occurred multiple times. Jaycee going into respiratory distress at home has been very frightening and has impacted me long term. The stress and fear that hits me suddenly when I see my child with blue fingers and toes cannot be described. I have to suppress those emotions because I have to act. I have to grab inhalers, hook up the oxygen tank, and call for help. Seeing this once was bad enough, but it's happened more times than I can remember. There's always a fear of 'can I help her in time' running through my mind.

There are many parents that can't relate to me. And truthfully, I can't relate to many parents. I use to get annoyed when people would talk to me about what they described as their worst thing. I listened to a story of their child getting ear tubes that scared them while I wanted to roll my eyes. There was lamentation expressed by another for not being able to breast feed when I just wanted to tell them to get a grip. There was a mom in near tears telling me how she was treating her child at home for bronchitis. Sigh! If only these were my problems, I'd say to myself. Maybe I was jealous. Maybe I needed more sleep. But, I hated hearing stories of people describing their "worst" thing that wasn't even on my radar.

But then, I occasionally meet someone in the hospital with a child who has been there for months, and I realize my situation looks pretty good. Even though my problems look easy to these hospital veterans, they are still really big issues that affect my parenting life.

Here's what I have come to understand. Everyone's worst may be different, but this is not a contest (and certainly not one you want to win). Just because your "worst" may be worse than someone else doesn't mean others aren't justified in how they feel. People are entitled to feel the way they feel. Their pain and perspective is valid to them, because it's all they know.

We need to be more compassionate with each other. We need to pray for parents going through their "worst" thing. You might have some wisdom to share with that parent. You might have a word of encouragement to help them get through their worst time. So don't discount their worst time, but see it as an opportunity to show Jesus to them.


Jaycee and her machines during one of worst times in the hospital. Here's the truth. This happened 2 years ago and I can barely stand to look at this picture and think about it.
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Monday, November 9, 2015

Order in the Chaos

My life feels chaotic often. Surgeries, hospital admissions, and illnesses with Jaycee have created times of complete chaos in our lives. They disrupt work schedules and obligations, cancel vacations, and force us to stay away from crowds of people and their germs. One illness can affect our lives for weeks making it difficult for me to even get to the grocery store.

As a Christian, I often look for "signs" that God is in our situation. These signs come in all different forms. A sign could be a meaningful scripture I read during my Bible time, a text from a friend at just the right moment, a song that speaks to me, or something out of the ordinary that happens.

Last week, I got a new sign that I needed after another recent hospital admission. It's hard not to feel beat down after another admission and another three weeks of chaos in our lives. I wasn't necessarily praying for a sign. I just wanted to know God was here and that He cared for my family during all the chaos.

So last week, I was standing in Jaycee's bedroom next to her chair giving her a puff from her inhaler for the umpteenth time in her life. I looked up at the memory box hanging on her wall directly in front of me. The box has her hospital bracelets and the ultrasound telling us that our sweet baby was to be a girl. For some reason, my eye was drawn to the date of the ultrasound. And there it was....a sign. A neon, flashing bright sign! October 19, 2005 

Did I read that right? My eyes checked it again and again. I couldn't believe this important day in our lives was on October 19.






What's the deal with the date you ask?

If you study my blogs intensely, you might know. But if not, I'll go over it again.

In 2013, septic shock, ARDS, respiratory failure, pneumonia, and rhinovirus almost took Jaycee's life. She survived a 4 week nightmare and was discharged on October 19, 2013.

One year later, she was baptized in our church on October 19. It was only after the baptism that I was able to connect the dots by going through her old posts on a website I use to keep family and friends updated on her health. When I found the October 19, 2013 to 2014 connection, I was ecstatic. It was a sign then to me that God was reclaiming that time in Jaycee's life for good.




 
 
 
 
Here I was standing looking at Jaycee on October 19th, 2005 through an ultrasound picture in her memory box (the white box to the left of the door). I couldn't help but smile as I looked to the right of the door. There in the black frame was Jaycee's baptism on October 19th, 2014. Two pictures feet away from each other on the same day 9 years apart. I couldn't have planned that better if I tried....the ultrasound showing Jaycee before she born near the picture showing Jaycee being baptized to new life.
 
 
Are you still wondering what the big deal is?
To me, it signaled that there's actually a Godly order among the chaos happening, assuring me that God is around. But maybe it takes me awhile to notice!
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Tuesday, November 3, 2015

When Your Kid Is Mad at You

It happened 4 years ago, but I remember it well.

My son was very upset with me. He didn't not scream at me or use harsh words. Instead, he ignored me, refused to give me affection, and withdrew from me ever so slightly.

I had just returned home from an emergency hospital admission with Jaycee. It was one of those admissions where I left in the middle of the night leaving Elijah with a grandparent while I rushed Jaycee to the emergency room. For about a week, I stayed with Jaycee in the hospital. Because Jaycee had RSV, Elijah was advised not to visit.

When I returned home, Elijah was upset. He was not quite 2 years old, but he had felt the impact of being away from his mommy for a week. He was letting me know about it. Elijah and I always snuggled, hugged, and kissed at bed time. The first night I tucked him into bed, he withdrew. He would not kiss me. I was shocked and a bit hurt.

This continued for weeks. Obviously, he was young so he relied on me for basic needs. But our relationship had changed. He was mad at me. I tried to reassure him. I tried to explain to him that his sissy was sick and that I had to help her in the hospital. He couldn't grasp this at his age. He only knew I had suddenly disappeared and then suddenly reappeared a week later.

I responded to him the only way I knew how. I kept loving him and pursuing him. I hugged him, kissed him, told him I loved him, and eventually he came around. I'm guessing he began to feel safe and secure again.

That was the first time I knew a medical emergency had an impact on Elijah. I learned from that experience and used it to help for future emergencies. As Elijah gets older, I ask him questions about how he feels and give him opportunities to talk things out. Jaycee's illness takes a toll on all of us in the family, no one is spared.

A few weeks ago when Jaycee went into respiratory distress at home, I had to leave Elijah around 11 at night. My husband stayed home with him while I went to the emergency room. When Elijah woke up, my husband broke the news to Elijah. He cried.

The two of them then made their way over to the hospital that day. As I ate lunch in the hospital cafeteria with Elijah, a few times he remarked how he didn't know I had left last night. I told him that it wasn't planned, and I knew his daddy would take care of him. That seemed to satisfy him for the moment, but I knew he was upset with me.

After spending almost a week in the hospital with Jaycee, I returned home with her. Over the next couple of days, I tried to give Elijah some extra attention and talk to him about what happened. He continued to tell me that he was upset that I didn't tell him when we left for the hospital. Waking him up at 11 at night didn't seem like a good idea. After all, I was leaving him with his dad. Still, I guess he felt abandoned by his mom again. We talked it out knowing full well this could happen again. We discussed what we could do different next time. We came to an agreement. Next time, I would write him a short letter for him telling him what happened. He thought that was a good idea.

All relationships take work, especially when a medical crisis is regularly involved. When my child is mad at me, whether I can help it or not, I do what Jesus did. I try to respond with love. Love and time is the best I can give.



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Tuesday, October 27, 2015

10 Guarantees In the Hospital

It's good to be back here on my blog after a short break. If you read my last post, you may be wondering how my daughter is doing. She is great! She has made a full recovery from the pneumonia in both of her lungs. We have enjoyed being back home. I have rested and am ready for life to get back to normal.

That week in the hospital was strangely familiar to some of Jaycee's other admissions. I have become accustomed to how our hospital works and what to expect with Jaycee's admissions. While in the hospital, I have brief encounters with other parents. Some parents have spent significantly more time in the hospital than me. Others are clearly first timers. It got me thinking about how much I have learned about hospitals in the past 9 years. Most of our hospital admissions have been at St Louis Children's Hospital for respiratory issues. Certainly, experiences vary from hospital to hospital and for an individual patients needs. If you are relatively new to hospital life or will be going in to the hospital with your child soon, then read these to discover what it's like to be in the hospital.

1. I can guarantee you, sleeping will be difficult for you and your child.
In our hospital, only one parent is allowed to stay in the child's room. Sleeping options are a couch, a chair that folds out for sleeping, or the worst possible scenario-a regular chair. Besides the less than ideal sleeping options, there's the fact that the room is never totally dark, there's often people in and out of the room, and there are beeps from monitors and IVs. If you have a roommate, then it's even harder because there's twice the noise.

The other parent who can't sleep in the room gets to sleep in the parent lounge. This person doesn't have it any better. Due to problems with theft, the parent lounge is lit up all night. (Yes, isn't it awful you have to worry about theft while your child is sick?) The light really bothers me unless I'm just exhausted. Usually, the sleeping options out in the lounge are couches and sleeper chairs. The parent lounge is filled with other tired parents snoring, watching tablets, or talking on the phone. Neither sleeping option is great, but I tend to sleep better in the room with Jaycee. I have started taking Tylenol pm in the hospital to help me drown out some of the background noise. I have learned to be thankful for whatever sleep that I actually do get. Obviously, the best way to get sleep is to go to a hotel, but that isn't always a good option financially or for the child.

2. Things are done on the hospital's schedule, not on yours.
I use to get so angry when my child's P.M. medications were given at 9 at night after she had fallen asleep. I didn't see why the medication couldn't be given at her normal times. I would tell the nurse she got her medications at 6 am and 5 pm, which didn't seem to make a difference to them. After several admissions, I finally discovered that if a child gets a medication twice a day, then it is given once on the morning shift and once on the evening shift. Things are done on the hospital's staff schedule. You must adapt to it.

3. Some things are done at inconvenient times at the hospital.
Labs at 4 am sound reasonable right? Just when you go back to sleep, how about an X-ray at 5 am? I use to get so annoyed with these, but I learned it was done in part so that the doctors could have all this information for morning rounds.

How about a bath at 4 am? Sure, why not? It's a common practice in the ICU for us. I learned baths are typically done during night shift in the ICU because they generally have more down time than day shift. It may not make sense to you on why things are happening when, but I am sure there is a good reason for it.

4. Your child's skin will most likely leave bruised, irritated, or with small scabs.
Pretty much every admission for Jaycee has involved blood work, a nasal swab for viruses, and an IV. Jaycee is not an easy stick, and I'm well aware that even the best nurse can miss more than once with Jaycee. This results in bruises, sometimes many of them. In the ICU, the doctors generally like to have more than one IV line for Jaycee. To get 2 IV lines, multiple sticks may be necessary. Then things get worse when there's PICC lines, central lines (like the one in her neck in this picture), and arterial lines which will all leave small scabs and sometimes scars. Add to that tape (see picture) and stickers for leads and Jaycee's skin can get very raw and red.



5. Care is only intensive in you are in the Intensive Care Unit.
I use to think that Jaycee being in the hospital at all was cause for extreme monitoring and frequent checks from the nurses. I learned that a child in the hospital doesn't need monitored 24/7, unless they are in the ICU. A monitor may beep for several minutes with no one rushing in to your child's room. You may push your nurse call light button and no one may come for what seems like ages. But here's what I have learned: the nurses are busy. They are taking care of many people. They know which patient needs more intensive care. If you are not being checked by a nurse often that probably means your child is getting better. It's a good sign. But, it could be a sign that your nurse is terrible, so ya know!

Now, in the intensive care unit. It's different. The sickest kids will get 1 nurse assigned to them for a 1 to 1 ratio. When Jaycee had several IV lines, needed constant monitoring, and was on a ventilator, she received her own nurse. As she got better, she shared a nurse with another child. The care is intensive in the ICU. There's always a nurse (and usually a doctor) around to grab for any concern or need. Being in the ICU is really nothing like being on a regular unit in a hospital.

6. Opportunities to see the doctor are few.
This may vary from hospital to hospital. But at our hospital, the interactions with the doctors are limited. A doctor will usually come in early before rounds to check on Jaycee. We always try to be at rounds because that's when the doctors are present to report about Jaycee's progress and plan. That's the best time to ask questions and share any concerns because it may be the last time you see the doctor that day. If there's a change for the worse, then the doctors will make a sudden appearance. But, the doctors aren't just hanging around checking in frequently. This is the difference between the floor and the ICU. The ICU always has doctors around. They are close by because kids in the ICU are more prone to needing immediate attention. We usually have short chats with the doctors 3 or more times a day in the ICU, which is extremely helpful when things aren't going well.

7. It is to your benefit to be kind to the nurses.
Because you have limited interactions with the doctors, the nurses are crucial to your child. For the most part, we have had very caring, knowledgeable, and efficient nurses. Once in awhile, there's a nurse that just messes things up or doesn't know how to care for your child properly. But, I try to give nurses the benefit of the doubt. I know they are busy, work long hours, and have many responsibilities. They may make mistakes. If they aren't major ones, just let it go. Smile at the nurses. Ask them how their day is. Don't call them in the room for every little thing. Respect their time. I have "befriended" many respiratory therapists and nurses that have allowed me to get new information about Jaycee. There have been some burning questions I have had about Jaycee that I finally got brave enough to ask through some chats with nurses. Nurses that have worked their specialty for years are very knowledge. They are great people to ask questions to.

8. There are many rules at the hospital designed to keep the patients safe.
Our hospital has rules about the number of visitors at one time and restrictions on children visitors. At our hospital, siblings can visit but no other children can. Sometimes it's a frustrating rule, but it's a good one. There doesn't need to be a room full of child visitors bringing in their own germs and being loud for other patients. But, this is a rule I see first timers struggle with. Another rule first timers have difficulty with are those for children admitted with a virus who are in isolation. When your child is isolation, they cannot leave their room or the unit. Yes, it can be boring, but it's for the safety of the immune-compromised children.

9. Discharge is not immediate.
The first few times I was told Jaycee was being discharged from the hospital, I started packing up our belongings and was ready to go. Little did I know, I would sit there for hours before we would actually get to leave. Prescriptions needed to be wrote, discharge papers had to be signed, medications needed to be relabeled, and follow up appointments needed to be scheduled all before we could go home. It seems like this should be done quickly right? Not most of the time. If Jaycee and I actually leave the hospital before 1 pm, I consider it a "quick" discharge.

10. This is the most important one... The sooner you accept the way things are at hospitals, you will be happier.
It's easy for a sleepy and stressed parent to get frustrated and upset about little things that happen in the hospital! The sooner you learn how things are and give up your idea of how things should be, it will decrease your stress. Your child's recovery is the number one thing you should focus on. Let all the little stuff go. Sleep when you can. Take breaks when you can. Ask questions when you can. And just be thankful for day you leave that place.

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Monday, October 12, 2015

31 for 21: I'm quitting.

An alarm beeps.
A iv pump hums.
The sound of a bipap giving breath never stops.
My daughter lays in ICU very sick with a respiratory issue.
Jaycee screams for "mama" as she is suctioned.
And I'm reminded how your life can change in an instant.


I had plans this month.
Down syndrome awareness month is important to me because of Jaycee.
I know how scared I was when the words "Down syndrome" hung in the air from a doctor.
I didnt know what challenges we would face and what life would be.
NIne years later, I know.
I know how hard some days are but I know the joy, the love, the happiness you feel when you open your heart to someone like Jaycee.
I know how love has more meaning when there's more chromosomes present.
And I know there are people everyday who are scared to take on a baby with Down syndrome.
And so I write, I advocate, I tell our stories, I try to tell people they can do this!

And I sign up to blog for 31 days in October for Down syndrome to raise awareness.
And now I quit on day 12.
Jaycee is in ICU and she needs me.
Raising awareness is important but nothing is as important as my daughter.
So as I officially quit this blog challenge, I wish you could sit in this hospital room, see what I see, feel what I feel for Jaycee and then blogs like this wouldnt be needed, because you would understand how powerful love is.
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Sunday, October 11, 2015

31 for 21: Taking Courage


Blogging 31 days for Trisomy 21 for Down syndrome Awareness Month Continues with Share a Scripture Sunday.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and let your heart take courage; Yes, wait for the Lord.     Psalms 27:13-14


This is a scripture that I often read when Jaycee is in the hospital. Jaycee's Down syndrome has never been the "hardest" part of our lives. Hands down, the most difficult part has been seeing Jaycee struggle with medical conditions that affects her daily life. Her asthma, obstructive sleep apnea, lung cyst, poor cough response, and heart history combine to make a simple cold very dangerous.

When Jaycee is at home wheezing and struggling to breath, I want to despair. When Jaycee gets worse and has to go into the hospital, I really want to despair. When she ends up in the ICU, well you know how I feel.

It's hard to live through those things once, twice, three times, and then more times than you can remember. That's why I need to read passages like this and remind myself to wait, be strong, and take courage.

Sometimes, I have to reach out and take the courage, it doesn't just come to me. I have to choose it and take it. Trust me, it's better to face obstacles with courage.

If you are facing something in life that makes you despair and doubt God's goodness, don't give up. Take courage today!

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Saturday, October 10, 2015

31 for 21: Sibling Relationships

Happy Sibling Saturday for #31for21!
 
 
Jaycee and her Down syndrome journey is the focus of much of my writing. But, her relationship with her brother is an important piece to mention too.
 
 
Jaycee is three years older than her little brother, Elijah. They are typical siblings in many ways. But, their relationship is different in a good way. They really like to spend time together. They spend way more time together than I ever did with my older brother. They watch tv together, sit in chairs together, and play outside together. They attend the same school, which means they ride the same bus to the same place. They often sit together on the bus.
 
 
Last week, I took Jaycee to the doctor. Throughout the day, Jaycee asked me several times where her "Bubba" was. That same day, Elijah had to go to school without his sister. As soon as he woke up, he said he didn't want to go to school without Jaycee. He didn't want to ride the bus without her. He didn't want to be picked up from school without her. He wanted her there.
 
 
I like that my kids like each other. They have their moments of fighting, but overall they truly are happy siblings. 
 
 
 
Elijah holding Jaycee's cup while she gets a drink after a long day. This was not a staged photo!

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Friday, October 9, 2015

31 for 21: Packing Up

31 for 21 challenge continues with photo Friday. Here's a picture and the story behind it.


 
Question. How many nights do you think I packed for Jaycee and I in this picture? 
 
Answer: 2 nights
 
 
The plastic bag on the table held snacks, distilled water for the bi-pap, and toys for our trip. The green cooler bag had juice and her medication that needed to be refridgerated. The red bag is the diaper bag used for public outings during the day. The small black bag directly in front of the red bag is Jaycee's bi-pap. The taller black suitcase is Jaycee's vest airway clearance machine. The purple suitcase had Jaycee's clothes, the nebulizer, and night time diapers. Finally, the navy blue bag had my clothes.
 
Question: How did I get all these bags in to the hotel with Jaycee?
 
Answer: Not very quickly or easily. Ha!

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Thursday, October 8, 2015

31 for 21: When Your Child Wears A Bi-Pap


Welcome to Throwback blog Thursday for Down syndrome Awareness Month, which is a repost of a previous entry.




When your child wears a Bi-pap....
...there are certain things you can and cannot do. The other day I realized that Jaycee has worn a c-pap or a bi-pap for most of her life now due to obstructive sleep apnea. For the last 4 years, Jaycee and I have had this love/hate relationship with her machine. She hates wearing it. I hate making her wear it. But, it's helping her breathe better at night, so we must do it. She's gotten more accustomed to her bi-pap over the years but some nights it's still a struggle to get it on perfectly (with no air leaks) and to keep it on her.

Here are some ways your life as a parent is affected when your child wears a bi-pap:

-There are no more spontaneous sleepovers. If you are at grandma's house late in the night, you cannot all of a sudden decide to let your child spend the night. There isn't an extra bi-pap laying around their house for her.

-If your child wants to spend the night somewhere, the temporary caregiver must be trained on how to use the bi-pap. Honestly, who wants to do this!? Apparently just my mom, since that's the only person she's ever stayed.

-When you travel, you have to pack your machine up in a little bag. You also have to make sure you have distilled water to put into it.

-If you go on a rare date with your spouse, the date must end early before your child might fall asleep. You have to be home to put your child on their bi-pap.

-There is no more of your child cuddling in bed with you and sleeping there a few hours. They can't because if they do, they won't be able to breathe safely.

-Mom (or sometimes dad) cannot go to bed until the child is on their bi-pap and fast asleep. There's no more coming in late and everyone settling into bed at the same time at my house. In our case, we put the bi-pap on after she's fallen asleep, which can take 20-60 minutes.

-You have to make space in your child's bedroom for the bi-pap. Since it uses water, the space has to be "safe" from falls.

-You have to clean the parts weekly and remember when it's time to reorder new parts.

-You must memorize your child's bi-pap settings or write them down and carry it with you. If your child is in the hospital, you will have to know this information.
 
 
***UPDATE: Jaycee has now used her machine for 6 years and no longer hates her bi-pap! I think she knows she rests better with it. For the first year or two on it, I dreamed of the day that Jaycee would no longer need it. I have resigned to the fact that Jaycee is probably going to need it forever.

Obstructive sleep apnea is common with Down syndrome due to the low muscle tone and smaller airways. Often removing the tonsils and adenoids will help. In Jaycee's case, it didn't.
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Wednesday, October 7, 2015

31 for 21: Jaycee "Says" Some Funny Stuff

Happy Witty Wednesday! Today, I will attempt to be humorous in my 31 days of blogging for Trisomy 21 challenge.

Though my daughter is minimally verbal, she still communicates. She uses a few words, novel gestures, sign language, and her speech generating communication device. Like any child, Jaycee sometimes "says" some funny things. Here's a few things that stick out to me:

  • When Jaycee was in pre-school, I would ask her "Do you have any pets?"  Instead of saying no, Jaycee said on her talker, "Wonder Pets."
  • If I'm telling a story and get too loud, Jaycee will sign "Mommy mad." For mad, Jaycee will put her hands on hips and do a sigh. It's super cute.
  • We have a family friend named Rusty. When Jaycee was little, she started signing "Thirsty" whenever she saw Rusty. To this day, Rusty is still "Thirsty" to Jaycee.
  • We were at a party once and Jaycee was stuffing her face with the yummy cake. The person who made the cake asked Jaycee if she liked it. Jaycee answered on her device "awful" and continued to eat the cake as fast as she could. (I was embarrassed.)
  • Sometimes Elijah doesn't want to eat his dinner, so he gets in trouble. Jaycee will often say using her talker, "Elijah time out."
  • Jaycee loves the name Rachael and uses the Rachael name sign from the "Signing Time" DVD series. There have been several times when Jaycee has met a baby, a woman, or an animal and asked me if their name was "Rachael." Or sometimes she'll continue to call someone Rachael even if she knows it's not right.
  • We ate at Cracker Barrel for breakfast one morning. I don't remember what Jaycee was eating, but I had white gravy with my breakfast. Jaycee kept eyeing my gravy and wanted a bite. She kept signing "mashed potatoes" for the gravy. After she ate most of my gravy, she remarked that those mashed potatoes were "delicious."
  • At Six Flags this summer, I rode with Jaycee on a swing ride that went extremely high. I was a little scared and may have screamed a few times. Jaycee laughed and enjoyed it. When my husband asked Jaycee how the ride was, she signed "Mommy was scared."
  • Sometimes, I will whisper in Jaycee's ear a little secret and tell her not to tell dad, who is sitting next to her. She will immediately lean over and whisper in dad's ear some babblings like "bababa dadada" and then smile at me. She loves doing that!

    Photo: A sentence Jaycee said on her talker

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Tuesday, October 6, 2015

31 for 21: Down syndrome & Physical Therapy

It's Tuesday, which means therapy talk for today's 31 for 21 blog.

Physical therapy has been part of Jaycee's life since she was an infant.

Let me be honest, when Jaycee was 2 months old, I wondered how physical therapy would be helpful. I understood she had Down syndrome. I knew that Down syndrome is associated with low muscle tone, which in turn makes the child very, very flexible. Because of this, developmental milestones are usually met much later. So, I consented to physical therapy not really knowing how it would be helpful when she was so tiny.

In one of her first physical therapy sessions, Jaycee was attempting to roll over. This being my first child, I thought she was doing well. The physical therapist pointed out that Jaycee was trying to roll over by hyperextending her neck (picture her chin being lifted up high). In other words, she wasn't using her muscles to roll over, she was using her flexibility to do an atypical movement.

She kept her neck hyperextended often when she was laying on the floor. Again, I thought this was what every baby did. Where did I put the toys with her neck hyperextended? Way up high where her eyes were, of course.

Jaycee's therapist, Glenna, showed me that hyperextension wasn't good, and I could help it stop by putting toys lower to force her to look down. I also was encouraged to put towel and blanket rolls behind her neck and head so that her chin would stay down toward her chest instead of up too far.

So a few sessions in to early intervention physical therapy, I realized that this was going to be very helpful for both Jaycee and myself.

Physical therapy has been instrumental in helping Jaycee learn motor movements and accomplish gross motor milestones such as running, jumping, and climbing stairs. Over the past few years, physical therapy has worked to build Jaycee's endurance and keep addressing her low muscle tone. Except for summer vacations or short breaks, Jaycee has essentially been in physical therapy since she was 2 months old.

Physical therapy has made a difference in Jaycee's life. I'm so glad we started early.



Jaycee doing a gross motor game at Special Olympics with her helper
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Monday, October 5, 2015

31 for 21: Using Her Talker

October is Down syndrome Awareness month AND augmentative and alternative communication (AAC) awareness month. So today's post will address both for a movie Monday treat.
 
 
Jaycee is 9 years old. Besides her Down syndrome, she has childhood apraxia of speech which makes it extremely difficult for her to speak. She has used a speech generating communication device for a few years now so that she can communicate with us. I love showing people Jaycee's device so they can learn about this different way of communicating.
 
 
This first video is just me doing an introduction of her device. 

 
 
 

 
This is a conversation I had with Jaycee using her device. 
 
 

 
Isn't she sweet?  AAC works!!

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Sunday, October 4, 2015

Why I Laugh

The 31 for 21 blog challenge for Down syndrome awareness month continues. Today is scripture Sunday.

Here's a scripture I have used in prayer often:

A merry heart does good, like medicine,
But a broken spirit dries the bones.
Proverbs 17:22

I have had many opportunities over the years to be upset. The challenge of taking care of a child with developmental delays and many health problems is sometimes very difficult. The post traumatic stress after one of Jaycee's hospital admissions is hard for me to put into words. There are times when my spirit feels broken. So I pray for myself. I pray that I will have a merry heart.

When Jaycee got out of the hospital this summer, I wisely asked for prayer from someone on the ministry team at church the first time I was able to attend church afterwards. My spirit was broken. I was worn out physically and emotionally from that hospital admission as I once again faced the idea that Jaycee's future wasn't guaranteed.

The prayer started out with me crying sobbing. And it ended with me laughing. I don't know why, but the prayer spoke to me. I did feel better. I felt like laughing, so I did. Immediately, the prayer partner said, "You keep on laughing! Satan thinks you have nothing to laugh about, so every time you laugh it confuses him."

Wow! I laugh all the time for no reason. I laugh when I'm nervous. I laugh at times when I'm mad. In the past couple of years, I have learned to smile and laugh as I'm trying unsuccessfully to get Jaycee to obey me in public while I'm screaming on the inside. I laugh a lot. People who know me have told me that I laugh easily.

Now, when I laugh, I have a new reason to keep laughing. It's my joy. It's my victory. It's part of my testimony. And it's medicine for my spirit.



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Saturday, October 3, 2015

My Son Explains Down syndrome

Welcome to day 3 of 31 for 21 & Sibling Saturday!

For the first time, I sat down and asked my son, Elijah, what he knew about Down syndrome and his sister. Elijah is 6 years old and has grown up with his big sister with Down syndrome.

Before reading this, you should also know that Jaycee has been admitted to the hospital 21 times mostly for respiratory issues related to her sleep apnea, lung cyst, and asthma. Jaycee's limited speech requires her to use a communication device that we call her talker. So his experience with Down syndrome isn't every sibling's experience with Down syndrome.

Here's our interview:

What is Down syndrome?
Jaycee has Down syndrome. It is someone who needs to be in a special class.

What are some problems Jaycee has?
She doesn't listen very good. She's had heart surgeries. She has to go to the doctor and the hospital.

What's the best thing about Jaycee?
She laughs at you mom when you scream on rides at Holiday World.  (He's right.)

Is there anything about Jaycee that bothers you?
She takes the Kindle away from me!!

What do you think abut Jaycee's medications and machines she needs everyday?
It helps her not to go to the hospital and get sick. I don't want her to go to the hospital.

Why do you think sissy gets sick?
She has heart problems, and she's had heart surgeries.

What's your favorite thing to do with Jaycee?
We play mostly. I'd like to teach her to ride a bike. I can ride mine, but she can't ride hers yet.

Do people with Down syndrome look different?
Yes. They don't talk as much as people that don't have Down syndrome. I don't use a talker and Jaycee does. She also wears glasses, so that's different.





My son is sweet. Obviously, his perspective of Down syndrome is based on his sister with a combination of health problems that aren't typical for Down syndrome. I found it interesting that he doesn't "see" the traits of Down syndrome on her body yet.

There are things I need to teach him about Down syndrome, but there are some things that I am glad he doesn't yet know.

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Friday, October 2, 2015

31 for 21: When the School Did Something Awesome

Today is the 2nd day of 31 for 21 challenge where we blog about Trisomy 21 for all 31 days of Down syndrome awareness month.
 
Happy Photo Friday everyone!! Here's a photo, well 2 actually, and the story behind it.
 
 
This is Jaycee leaving the hospital in 2013 after a 4 week, very intensive hospital admission. See blog posts from October 2013 for more information on that stay. Due to the illness and recovery, Jaycee missed about 6 weeks of school.
 
When I thought she was ready, Jaycee started back to school for a few hours in the middle of the day working her way towards full time.
 


When I arrived at school with Jaycee the first day back of her shortened schedule, I immediately saw this sign on the entrance of the school. I was so happy to see this sign giving Jaycee a special welcome back.

But that wasn't all the school had planned. The student body was notified the moment Jaycee arrived. I walked Jaycee outside the library to take her to the classroom building to find all the students lined up on both sides of the sidewalk. They were cheering for Jaycee and welcoming her back. It was beyond amazing. And maybe this tough momma shed a few tears.

 Dahlgren Grade School showed me that day that Jaycee was important to their school. It was something I'll never forget!
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Thursday, October 1, 2015

31 for 21 & Down Syndrome Awareness Month Begins!

It's October! Maybe you are thinking about fall and pumpkins, but our family gets excited for Down syndrome awareness month.  Once again, I will be participating in the 31 for 21 blog challenge, which is blogging all 31 days in October for Trisomy 21 (AKA Down syndrome).

Like last year, I have a theme for every day of the week. Today is Thursday, which is Throwback Blog Thursday. Here's a repost of one of my favorite blogs.

Down syndrome Questions

October is national Down syndrome awareness month. You probably already know that Down syndrome occurs when there are 3 copies of chromosome 21 instead of just 2. But over the years, I have been asked all sorts of questions about Down syndrome. Here are a few of the more interesting ones:

Is there something wrong with you because you had a baby with Down syndrome?
No. Nothing is wrong with me. There is no medical reason as to why I had a baby with Down syndrome. It just occurs. I didn't do anything in the pregnancy to cause it. It's something that doesn't happen very often but could potentially happen to anyone. The chances of having a baby with Down syndrome increases with maternal age but the majority of babies with Down syndrome (80%) are born to women under 35. I was 25 years old when my daughter was born.

Isn't Down syndrome hereditary?
Down syndrome is a genetic condition because it involves the DNA. Genetic and hereditary are not the same thing. There are actually 3 types of Down syndrome. A rare type of Down syndrome that can occur could be due to a parent being a particular carrier, but this is a small percentage of people with Down syndrome. When I had my daughter, I was told that I had a 1% chance of it happening again. In general, Down syndrome is not hereditary.

How severe is your daughter's Down syndrome?
I get asked this once in awhile. There are no severity ratings with Down syndrome. You either have it or you don't. There is not a "mild case" of Down syndrome or a "severe case" of Down syndrome, although sometimes I hear parents saying this. There is much variability within individuals with Down syndrome. Think about your own children and the differences in their abilities. People with Down syndrome are no different. While some may have more significant delays than others, there are no severity ratings given. However, the intellectual disabilities (formerly called mental retardation) that people with Down syndrome have can be classified as mild-profound.

Is your daughter always happy?
No! She has a full range of emotions. Jaycee is a very happy and sweet girl. This is often said about people with Down syndrome. But, she has feelings just like everyone else. She gets scared when she hears loud noises. She signs "scared" when she sees tigers. She gets upset when I won't let her have seconds or thirds of food. She cries when her grandmas leave her (even though she sees them at least weekly). Jaycee gets excited when she sees her cousins. When she doesn't want to do something, she finds ways to let you know. She has likes and dislikes just like anyone else.


Come back tomorrow for more 31 for 21!
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Wednesday, September 23, 2015

When you have R Rated Memories

Sometimes my memories are R rated straight out of a horror film.

My R rated memories are graphic, scary, gory, painful or plain old awful and inappropriate for those under age 17.

When Jaycee came home in June this year after a three week hospital admission, my R rated memories of that admission were flooding me whenever I wasn't busy for a minute. The sounds and sights of Jaycee being suctioned down her intubation tube was horrific. The panic came back when I thought about her blood pressure dropping multiple times.

Beyond this last admission, there have been numerous times in the past 9 years when a moment became a long lasting R rated memory. Without being too graphic, here's a few:
  • The moment Jaycee's heart rate was in the 200s while the ER staff frantically worked and I saw a crash cart wheeled near her for the first time (Thankfully it wasn't used.)
  • Watching Jaycee's chest tube come out after her heart surgery (Trust me...it's gross. My husband got physically sick during this!)
  • Seeing multiple unsuccessful IV attempts on an infant Jaycee until they finally got one in a vein in her head
  • Seeing Jaycee turn blue multiple times at home due to respiratory distress and frantically trying to administer her emergency medicines
  • Seeing the puddle of blood when I stood up from my wheelchair at the hospital during my miscarriage
  • The times I have been given terrible news about Jaycee's condition worsening (Multiple anything you have seen in a movie X 100)
  • Watching a PICC line come out of Jaycee's arm (Once was enough for me! Didn't watch the second time!)
  • Seeing Jaycee being bagged in an extreme oxygen desaturation in the ICU (Second and third time was just as scary)
  • The "crime scene" look to Jaycee's bedroom after her hemorrhage post tonsillectomy
  • Knowing the child in the ICU room down from us is dying and seeing the parents walk out empty handed afterwards (Broke my confidence that only miracles happen in ICU)

What do I do with these R rated memories? They happened. It's part of what has shaped my life, my thoughts, and how I view the world. There's plenty of them to sift through too. My question in my prayer time with God this summer was, "God, what am I suppose to do with these awful memories?"

Choosing not to think about them seemed like avoidance and denial. Not dealing with them felt as if I never worked through them. Yet thinking about them made me feel depressed, anxious, and fearful.

I wanted to get my R rated memories down to a manageable level where I could think about these things without so many emotions.

I learned from wiser Christians how to pray about these memories. I prayed that I would no longer have those emotions when they popped up in my head. I prayed for my peace. I prayed that God would help that old self of mine in those memories to be strong and be comforted.

Memories after all are just memories. The fear that accompanies some of them is no longer a real threat to me now. I survived these experiences. They are over.

And so I will keep working on these R rated memories so that they will no longer feel like I'm trapped in a horror movie in my mind but more like a boring, low-key documentary.







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Tuesday, September 15, 2015

The Mistake I Almost Made

Last week, I published To the Pastor Who Baptized My Daughter. It had a good response, but it wasn't my plan for last week.

I originally started writing "Is there a place for Jaycee at church?" The idea for this came from a negative experience I had with a Christian recently. This sweet lady told me about praying for Jaycee, which I was glad to hear given her health problems. But then she went on to clarify that she's praying for Jaycee's Down syndrome to be healed and encouraged me to believe.

That statement hit me like a punch to the stomach. Let me explain the best I can. I believe in healing, but I guess I'm long past thinking Jaycee needs healed of her Down syndrome. When a Christian says that to me, I hear: "Your child needs to be healed in order to be ok in church."

Maybe you think I'm off base, but I have had experiences within the Christian faith that you haven't. I have had people suggest (or accuse) me of sinning to cause my daughter to have problems in her life. I have been encouraged to get the demon out of Jaycee's life so she could be healed of Down syndrome. These experiences leave me feeling like a second-class citizen in church at times.

I left that encounter with that lady with my head down, my mind racing back through previous comments I took offense to, and feeling bad about my family.

"Will Jaycee ever be completely accepted in church?" I asked my husband.

I teeter totter back in forth with this question as a person of faith who believes in prayer but also believes that people with chronic health issues and disabilities need to be accepted in some respects just as they are.

I just want Jaycee to be viewed as someone worthy of being in church even if she has Down syndrome and health issues. I don't want random people to walk up and start praying for her chromosomes making her feel bad about herself, especially as she gets older. I look past her Down syndrome. I love her the way she is. I don't want her to struggle but I don't want her to think she is less than because of 1 extra chromosome.

Getting back to my mistake....I was going to write a blog about all of this and how Jaycee doesn't fit well into the church. I struggled to write this blog. I typed, erased, retyped, cut, deleted, and finally stopped. Then God put on my heart the idea for the letter to Pastor regarding Jaycee's baptism.

It was as if God was answering the very question I was asking. Is there a place for Jaycee at church? The answer is yes. Jaycee was accepted enough by our pastor to get baptized while surrounded my many family and friends in support of her. More importantly, God accepts Jaycee. I believe God is pleased when Jaycee dances in church and wants to sit in the front row. I think God looks way beyond the Down syndrome too into her heart.

Maybe not every Christian will say and do the right things with Jaycee, but their intentions are good. Their heart is in the right place. They want the best for Jaycee, and I should not let their word choice bother me and get me down. I too have said many dumb things over the years that hurt people unintentionally. Therefore, I will extend that same grace to those as I wish to have for myself.

I'm thankful I didn't write that blog full of frustration and hopelessness, and I'm glad to be reminded that Jaycee does have a place with God and in the church.

Jaycee praying with a group of children at church.




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Tuesday, September 8, 2015

To the Pastor Who Baptized My Daughter

Pastor Chad,

It's hard to believe that almost 1 year ago, I watched you baptize my little girl, Jaycee. You probably have no idea what that moment meant to me and my family.

In my eyes, Jaycee has been part of our faith for a few years. Jaycee has always enjoyed going to church, insisted on using her talker to pray before meals, understood Jesus and his importance in Christmas, and loved to worship God. Christians generally believe that in order to be baptized, they should first confess Jesus as their savior. Having Down syndrome and only speaking a few words, this prerequisite seemed almost impossible for Jaycee.

I often wondered when I watched other children being baptized when Jaycee's day would come. How and when would this happen?

In 2013 as I sat in the intensive care unit, I was afraid Jaycee's moment had passed. Jaycee was on a ventilator and a room full of IV pumps and machines from being in septic shock and pulmonary and cardiac failure. I suddenly had a burning desire to get her baptized. When Jaycee was discharged on October 19, there was so much to do with her recovery that I pushed the baptism on the back burner.

Finally, I got brave and asked my husband about baptizing Jaycee. He was unsure but after some time to reflect, he decided it was a good idea. Still, I did nothing. I was afraid to ask you to do a baptism on a minimally verbal child. I was afraid you would say no. I know you take the act of baptism seriously and I was afraid you would think I was making Jaycee do this. I was afraid of the rejection I would feel for myself, our family's special situation, and Jaycee if you said no. I didn't want to face that rejection.

For months I trudged along with the thought of baptism coming less frequently. Then, we suddenly found ourselves in the intensive care unit with Jaycee again when a simple dental procedure resulted in aspiration pneumonia. After a scary day in the hospital, I told my husband, "If she makes it out of here, she's getting baptized! We can't wait!"

When things settled down, I bravely wrote you an email expressing my desire for Jaycee and trying to make a case for her to get baptized. I waited (impatiently) for a response and became nervous when I saw you responded back. You said you were going to pray about it. I admired you for not telling me no right away. As I waited for your final response, I came up with alternative plans some of which involved baptizing her in a hot tub.

With nervousness, I opened your final email in which you agreed to baptize Jaycee if it was our desire. You came up with a plan to baptize her after service so that she could take her time and have her family gathered around her to make her comfortable. You had enough forethought to ask me about her comfort level with water. A date that worked for both of us was set.

I had some time to prepare Jaycee for her baptism. We watched YouTube videos of people getting baptized. I wrote Jaycee a special story about it using words I knew she would understand. Then the week before the special day, I started practice baptizing her in the bathtub without actually taking her head under the water. She understood what she would do, and I was confident she could do it.

On October 19, 2014, Jaycee entered the water with a smile on her face. Her family and close friends surrounded her to witness this happy occasion. You spoke to our family briefly and then to Jaycee trying to use some of the words I used with her. Then the big moment came and Jaycee wasn't scared at all. She left with the same smile on her face. There were tears that day but none of them were from her. It wasn't until later that I realized what happened on October 19th the year before making it even more special.



I wish you could have seen Jaycee watch the video at home later while she smiled and cheered for herself. From that point on, when she referred to her baptism, she signed "swimming." You weren't in the bathroom with us one Sunday when Jaycee pointed to the door of the baptism and signed "I went swimming there." You weren't in the living room the day I was watching one of your sermons online when Jaycee looked at the screen and signed "That guy and me swimming." You haven't been in her room to see the pictures displayed that church gave us of her baptism so she can look at, remember, and tell visitors of her "swim" at church. You weren't there when other parents of children with special needs asked me how Jaycee did the baptism with no fear and wondered if their child could do it. Since you missed these things, I want you to know how much that day meant to us, people who witnessed it, and other families with children with special needs.

When we found ourselves back in the intensive care unit just a few months ago with Jaycee in respiratory failure again, I was comforted by the fact that Jaycee was baptized. For that, I thank you. I thank you for allowing Jaycee to take part in her faith even if she can't do all the steps everyone else does. Thank you for helping our family have that special memory in the church and not in some one's hot tub. We are looking forward to talking to Jaycee about her upcoming baptismal anniversary, and it's all thanks to you!

Evana


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