What Mom Says!

As a parent, I find myself saying the same things over and over. (And over.)


When I'm parenting Jaycee, these are the things that come out of my mouth most often:

• Jaycee, it's time for your medicine/treatment.
• Let go of your brother please!
• Time to go to the potty.  Jaycee rarely goes to the bathroom on her own; she goes on a schedule.
• Don't eat so fast!/Chew your food.
• Are you listening to me?
• Shut off the Kindle./Who gave you the Kindle?
• I don't understand, use your talker.
• I don't know what Cousin Gabby is doing!  My response to her signing for cousin Gabby multiple times a day.
• Jaycee, dad left the room take his seat. This is a big joke in our family that Jaycee always sits in his seat when he leaves the room. Sometimes, I encourage it.
• I love you, Jaycee.  To which she replies as best as she can, "love you momma."
• You don't need your shoes, we aren't going anywhere.

As you can see, Jaycee requires instruction. Jaycee needs answers to her questions. Jaycee has to be reminded of things. Jaycee craves love. And, Jaycee likes to play jokes.

In this respect, she is like any other child.





 

Why I Cringe at the R-Word

The r-word is thrown around often in our society. I admit that even I freely used the r-word when I was younger. It took having Jaycee to understand why the r-word is so offensive. Jaycee became the face of the r-word for me. When I hear people say it, I instantly think of Jaycee.

Even though intellectual disability has replaced the term mental retardation, the r-word is still present in everyday speech. When I hear people say things like, "His hair is the r-word," it got me thinking about how people use the r-word loosely.

Based upon things I hear people say when they use the r-word, these are apparently descriptors of people like my daughter:
-Someone who has a bad hairdo.
-Someone who makes big mistakes.
-Someone who asks too many questions.
-Someone who messes up in games or are the losers in the games.
-Someone who looks ridiculous.
-Someone who doesn't make sense when explaining something.
-Someone who isn't smart.


I have never heard the r-word used in a positive way.

So let's give a name, a face, and a description of someone living with an intellectual disability.

This is Jaycee.
Yes, she has trouble speaking because of a combination of diagnoses despite years of speech therapy.
She cannot run fast and isn't very athletic because she has low tone and lung problems.
She is a slow learner, needs lots of repetition, and can work on the same task for months or years before catching on because of her intellectual disability.
Sometimes, she has trouble understanding directions to the point where 1 or both of us get frustrated.
Sometimes, her face gets messy when she eats. Her low tone makes it difficult for her to feel light food particles on her face.
Sometimes, she gets really, really scared and wets herself because she can't verbalize that fear to me.
Sometimes, her hair looks messy. The bi-pap mask she wears every night leaves her hair a complete mess by the morning.
But, Jaycee is toilet trained, dresses herself, buckles her own seat belt, reads simple sentences, uses a few hundred signs to communicate, and can navigate Netflix as good as I can.


I hope you understand why I cringe at the r-word.

Because she has an intellectual disability, she has to work harder for everything she does.

She's not a joke. Neither are her problems or the way she looks.

The use of the r-word is a cheap shot at people like Jaycee.

Can you see why the r-word makes me cringe?

What Special Olympics Did For This Mom

I can make you a list of special achievements that many children receive but Jaycee won't.

-School honor roll award: Nope
-Perfect attendance award: Not even close!
-Our school's Accelerated Reading Points Club: No-not sure if she even got 1 single point last year.
-Making a team that requires a try-out: I'm going to say no.

As proud parents post pictures on Facebook and rightfully receive accolades, I sit with my medically involved, developmental delayed, minimally verbal, foot brace wearing daughter. It's ok. She does what she can do. And we still find things to celebrate like going six months with no hospital admissions or when a letter in her name is written sort of legibly.

But then came Special Olympics and we had a new reason to celebrate.

Jaycee competed in Special Olympics for the first time last year. I enjoyed seeing her on a team, making the lap around the track for opening ceremonies, and seeing her compete. Jaycee's reaction of fear and crying when the gun shot at the start of her first race is something I'll never forget.

Even if she didn't win, it was a really neat for our family! Jaycee was an athlete. It was still nice to see her compete, get a ribbon, and have a new experience. Special Olympics gave her something she couldn't get anywhere else, especially in our rural area.

This year, Jaycee did well throwing the softball at the regional meet qualifying her for the state meet. We jumped at the opportunity to take her to the state competition.

I thought we would just go, watch Jaycee throw a softball for a few minutes, and make the long drive home. But, the state competition made me feel closer to Jaycee in a way I didn't expect.

I don't look like it now, but I was a runner in high school. I wasn't the best and greatest but I was average. I won a few races and qualified for the state track competition more than one time individually and on a relay team. When I went to the state competition, I knew I was going to lose. I wasn't running any times close to those extremely fast mile times. I knew and my parents knew we were pretty much going to the meet just for the experience of it all. Now, I was going to a state meet again this time as a parent.

Arriving at the state competition with Jaycee, one of the first things we did was get in the souvenir line. Jaycee picked out a pink shirt which we had her name and "track and field" printed on the back. Watching that shirt being printed, I was touched knowing my parents did that with me years ago. Here I was having a similar experience I thought I would never have with my child when I heard the words "Down syndrome" years ago.

The next day, we all put on our t-shirts supporting Jaycee and the Purple Miracles. I was a proud mom of an athlete. Anticipation grew as Jaycee was under the tent checked in and waiting for her turn. Jaycee waved at us and smiled. I found myself nervous for her. We positioned ourselves for the best viewing as she took the field. Jaycee threw as hard as she could. She did her best. And I was proud as she received her fourth place ribbon. She was proud too.

I was surprised at the emotions I felt seeing Jaycee compete and receive an award. I wanted to scream, "That's my daughter! She's awesome!" But I didn't. That would have been really weird. But, I did shed a few happy tears watching Jaycee succeed.

I felt a special connection to Jaycee that weekend. She was a state competitor just like her momma.

Special Author's Note:  I want to give credit where credit is due. Jaycee's teacher, Jennifer Tolley, initiated the Special Olympics program to our school just a couple of years ago. She took on added responsibilities when she volunteered to do this. Without Mrs. Tolley and her helpers, none of this would be possible for Jaycee and the other children on her team.



Jaycee with Mrs. Tolley and helper Amy Anselment

Where is God when...

Where is God when Jaycee is turning blue from respiratory distress?
Where is God when Jaycee had heart surgeries?
Where is God when my little girl is in pain?
Where is God when we are rushing to the emergency room?


These types of questions have popped in my mind often since having Jaycee. Sometimes, the question was a whisper. It was something I could ignore or easily refute. I knew God was with me.

Other times, the question was screaming in my head making me doubt everything I believed and understood about my Christianity. The question tainted how I saw the world. It made me see nothing good in my life because the problems were so huge. I stumbled around day to day going to church, reading my Bible, and asking for wisdom during trials with Jaycee with lots of doubt hanging over me.

Here's the one thing I have discovered.  When I doubt God's place in my life, I become completely hopeless....about everything.

And that's not a good spot to be in.

Be strong and let your heart take courage, All you who hope in the Lord. Psalms 31:24

I've blogged previously abut how I don't blame God for medical issues that happen in Jaycee's life. I think some things just happen,. While I don't play the blame game anymore, there are moments when I look around and try to find God during a crisis.

So, as I reflect back on Jaycee's 2 weeks and 5 days in the hospital, I will answer the questions:
 Where was God when all that craziness was happening? Where was God when Jaycee was in respiratory failure and on a ventilator? Where was God when her blood pressure was going too low? Where was God when Jaycee was crying in sadness in ICU? Where was God when I was feeling all alone and scared?

• When Jaycee's breathing was going downhill at 3 in the morning, I was alone in Jaycee's room praying. I felt alone in my stress and worry as I prayed that the ventilator they were threatening would not happen. I thought about calling my sick husband, who was a few blocks away in a hotel, but I didn't want to wake him up. I didn't want to wake anyone up with this news but I needed someone to talk to me. Then at 4:52 am, my phone vibrated. My friend from church, Amanda, sent me a scripture through a text message. I don't know if that's a normal time for her to send a message, but I'm assuming not. I was so happy to have someone awake I could reach out to about this situation, since at that point I was the only one aware of it! I needed that text at that hour. That was a moment from God.
• During my two hours of praying against the ventilator and reading scriptures, I pleaded with God that Jaycee would not need the ventilator. Then finally, a thought came, "What if the ventilator is what she needs? She might need it to get better." It wasn't the answer I was looking for but the thought was from God. It was preparation. She would be fine even if medically she went down a road I didn't want her to go down.
• A short time later, a text message from Amanda again that encouraged me to listen to God. "It's ok if He says yes" that she needs the ventilator. Confirmation of a thought that came to me earlier! And a God moment.
• When my husband and I were sitting in the parent lounge while the doctors were sedating Jaycee, putting in her feeding tube, and intubating her, I was nervous but calm. Then the doctor came out to tell us Jaycee's blood pressure was dropping and wanted permission to put in an arterial line. That was my breaking point. I cried. I let it all out and the words, "I can't do this again," came out of my mouth. I wanted to give up because I knew the days ahead would be really hard. My husband encouraged me. Then the Unspoken song "Good Fight" came to mind. The song stayed with me for days; it was God in the song. Here's some of the lyrics.

"Good Fight"

Until you stop breathing
Until you stop bleeding
Until your heart stops kick-drum beating
When it's hard times
When it's long days
And the enemy is right up in your face
When your back's against the ropes and you're feeling all alone

Keep fighting the good fight (Never give up, never give up)
Keep letting your light shine (Holding it high as long as you live)
'Cause I'm never gonna leave you
Always gonna see you through to the other side
Keep fighting the good fight, fighting the good, fighting the good fight, good fight

Even in the road blocks (yeah)
Even through the rough spots
When you're feeling you've given all that you've got
I'm with you in the next step
Giving you in the next breath
I'll be the voice saying "You're gonna make it"
When you're out there on your own
You are never alone

• Then a few days later, I was listening to the JOY FM Christian radio station on my short 8 mile drive to the hospital from our campsite. And what song should come on the radio? Yep, "Good Fight" came on. God was with me on that drive. It was a powerful moment that brought tears to my eyes.
• God was there when people messaged me prayers and scriptures at all hours of the day.
• When I got the phrase "God's got this" messaged to me from 3 different people, I knew it was a God thing after the second one. It's not a common phrase people message me. Amazing!
• When people reported to me they were awakened in the middle of the night to pray for Jaycee, it was proof God was in our situation.
• And of course, Jaycee getting better and getting discharged from the hospital was a God moment.

So there was God in our hospital admission.

He did not show up in a miraculous move healing Jaycee on the spot and saving us from all those heartaches and tears. That seems to be the thing people look for during a medical crisis: a huge, major victory.

If that is the only version of God you allow yourself to have, you will miss all the little, powerful, and meaningful God moments.

So, I know where God was in our situation. I have no doubt He was there.

Will you be willing to look for Him in your situation?

Jaycee getting therapy post ventilator while she was in the hospital

When Bubby Visits ICU

Whenever Jaycee is in the hospital, we have always brought Elijah, who we call Bubby, in for visits. We have several reasons for doing this: we want him to know why we aren't home with him, hospitals are part of Jaycee's life so he needs to get use to them, and we miss him & want to see him.

My husband and I have tried to set some ground rules in order to bring 5 year old Elijah to visit his sister without scaring him. He doesn't visit if Jaycee is in any danger of something going wrong that day.I don't want him there on a day she is being intubated seeing me cry and getting worked up. He comes after the storm. That being said, if he visits and seems uncomfortable, he gets to leave the room. We do not force him to look at her or touch her if he does not want to. We try not to have him at the hospital too much. It is boring on a good day and there's not much to do here if you are well. But we are blessed that this hospital has a playroom/daycare for siblings open a few hours a day, so he has somewhere fun to go. And as he has gotten older, we give him opportunities to ask questions about things on Jaycee or about her.

So as I sit here in the intensive care unit for 16th day, I am reflecting on Elijah's visits this time. This hospital stay, like so many others, began with us leaving at midnight while he slept in his bed. We woke up poor grandpa to come stay with him so he wouldn't be jarred awake with bad news. Shortly after admission, Jaycee ended up in ICU because she needed to be on a bipap machine constantly due to the rhinovirus and pneumonia attacking her lungs. When that wasn't doing the job, Jaycee was intubated for over a week. Now, she is still recovering but doing much better.

Elijah had his first visit on this admission when Jaycee was stable on the ventilator. His grandparents brought him over for a short visit. He greeted me with hugs and small talk. Then I showed him his sissy. Bubby was prompted to ask any question he wanted.

The monitor, as always, caught his eye. He asked me what all the numbers meant, which I explained one by one. Then he asked me what a few of the IV lines were. Since he didn't mention her breathing tube, I told her how that was helping Jaycee breathe. Then he said he had 1 more question. "What's those scissors for on her bed?"

The nurse said, "We call those gizmos. Want to see one?"

Elijah happily takes the prize and starts hooking and unhooking them to objects. That was that.

Later, he asked to sit in bed with Jaycee and watch tv with her, which is what they do at home. I put him at the feet of her bed and positioned a pillow between him and her so he had a visual boundary on where he couldn't cross. It was great to see my kids in close proximity once again.

But it was the elevator ride that sparked the most interesting conversation. He read the list of floors, what was on each, and asked what some of them meant. Then, he asked, "What does the PICU mean?"

"It's the pediatric intensive care unit. That's where the kids that are really, really sick are."

Immediately he said, "But that is where Jaycee is. I didn't know she was really, really sick. You never told me!"

"Sorry. I just thought you knew that because Jaycee had a bunch of tubes and wires in her. But anytime Jaycee is in the ICU, she is really sick!"

His voice sounding concerned then asks, "Why does she get so sick? I never have to go to the children's hospital."

That's the million dollar question. I do my best to reassure him by telling him all the things I try to tell myself when I am scared about Jaycee. I also remind him that Jaycee was born with sick lungs (asthma, obstructive sleep apnea) so colds are much harder on her than any of us.

When the questions stop and we are back standing by Jaycee's bed, he talks to his sister. In a soft voice he tells Jaycee he has missed her and that he wants her to feel better. He holds her hand and encourages her the only way a bubby can. And even though this is a very sweet moment, I hope we never, ever relive this again.

My Privacy & Other Things I Miss in the Hospital

I'm still in the intensive care unit with my daughter. I have practically lived here for the past 11 days. Hospital life is different from regular life.

Here are some simple things I miss in no particular order while I'm in the hospital with Jaycee:
1. Walking around barefoot- In ICU you are required to wear shoes at all times. At bedtime, I can get by with just socks. But my feet get tired of wearing shoes for hours and hours.

2. Taking a shower in a clean bathroom- There's a lovely parent lounge shower here. I'm grateful for it but you can imagine the state of a bathroom that multiple people use. I just try to get in and out as quick as possible and not think about it.

3. Performing Jaycee's care- At home, I help Jaycee get dressed, do her medical care, and do all the little things for her. Here, I am allowed to help move her and assist with diapering. It is an odd feeling just watching nurses do some of the things I normally do while I sit on the sidelines. But right now, the sidelines are where I belong.

4. Having the ability to fix my hair- My curly, frizzy hair is hard to manage under the best of circumstances. Here, I don't have access to all my styling products or straightener. I don't have the energy to use them if I did have them anyway. I pretty much wear my hair in a
pony tail most of the time.

5. Having control over my daily schedule- In the ICU, you are suppose to arrive prior to 730 am when rounds begin. So breakfast and all the morning stuff has to be done before that. Then my husband and I wait for the doctors to come by and round on Jaycee. They could come any time between 730 and 11. So we are forced to wait. The rest of the day is all dependant on Jaycee and activity in the hall. Meals, bathroom breaks, and small breaks outside the room all depend on if Jaycee is calm and stable. If some other child is having an emergent problem, the unit may be closed making it difficult to get back in if you leave.

6. A bed to sleep in- One parent is allowed to sleep in Jaycee's room. There is a chair that pulls into a bed. Really it isn't too bad but I miss a nice comfy mattress with my own fluffy pillows.

7. Privacy- In the ICU, the people need the be able to see into Jaycee's room at any time. So her door is always slightly opened. The door is glass anyway so it doesn't matter if it is open or not. Staff are often in and out of her room doing their necessary duties. If you need to have a good cry or make a phone call, there is not a good place for that privacy unless the parent lounge is empty.

8. Being able to see my son everyday- I miss my son who is at home being well cared for by family. He comes over for occasional visits right now. We talk on the phone but it is hard being away from him.

9. Having a home cooked meal- Eating in the cafeteria and at local restaurants gets old quick. I miss our meals together as a family even if they are just hamburger helper occasionally.

10. A dark room- Because this is the ICU, the rooms and halls are never completely dark. The parent lounge is never dark either due to problems with theft, so there's no darkness for good, solid sleep unless we can bravely leave the hospital for a few hours.

11. Getting love from Jaycee- Since she's sedated and has a breathing tube down her throat, I really miss her hugs, kisses, and cuddles I normally get multiple times a day. I miss hearing her attempt at 'love you momma.' For now, we have to settle for holding hands.

The days are long here with many things that aren't ideal but I keep reminding myself it's only temporary. This too shall pass. And I hope it passes soon!

How the ICU is like a Haunted House

As I write this, I'm sitting in the intensive care unit listening to machines assist my daughter's breathing. This is the 6th time (at least-maybe more) Jaycee has been in ICU for an illness or emergency. The worst ICU stay included 3 weeks on a ventilator. The "best" ICU stay for her was just 1 night after going into respiratory distress after a procedure. We are no strangers to the ICU though I would love to never return here again.

If you have never had a child in the ICU, let me paint a picture for you. It is like a haunted house. You know going into it, that something bad is going to happen that will scare you. Even when there is nothing scary at the moment, you are on guard anticipating the next scare. You know absolute relief will only come when you leave that place, but you don't get to decide when you exit.

The characters in this haunted house don't scare you with axes or other weapons. It's syringes, IV sticks, tubes, machines, suctions, diagnoses, or just the threat of these that makes you scared.

A new parent coming in to the ICU is like a small child who is easy startled by anything in the haunted house. Me, I've been through this haunted house a few times. There are some things that don't make me flinch at all that would probably horrify first timers. Being on bi-pap continuously doesn't bother me much although I know it's not ideal. Holding my child down to assist with a necessary blood draw or cannula placement is second nature to me. The ventilator, now that machine is one that terrifies me. It means she's dangerously close to an exit I hope I never see. Watching the placement of really long tubes isn't pleasant either such as placement of a ng feeding tube or a PICC line. I find a way to shield my face so I won't see what's happening.

There are no ugly decorations or darkness in this place. In fact, this place is rarely ever dark. Instead, this haunted house has simple monitors that display numbers that can give you a sense of relief or send you into a panic. The alarms the beep, buzz, ding, and sound at unexpected times can be frightening. The images of your child enduring such awful, unimaginable things as a result of those alarms will scare moms like me for weeks, months, even years to come.

But not everything in the ICU is terrible. There are some really nice people here. They are doctors, nurses, residents, and respiratory therapists to name a few. They mean no harm when they are part of the scary moments. In fact, they are trying to save your child's life which sometimes calls for things that make us parents squeamish.

So if you ever find yourself in this place waiting for an exit, do whatever it takes to fight off all the fears, imagery, bad news, and worst case scenarios. Find a positive song, verse, person, or activity to help you through. It won't be fun. It won't be easy. But when you leave that haunted house holding your child's hand, it will all be worth it.