Thursday, September 27, 2012

2nd Time Around

We have had a few milestones with Elijah lately. He started pre-school two weeks ago. I never thought I'd willingly put my three year old in school. I thought he'd be happy at home with me until he was five. I actually pictured that for all of my unborn children when I was a newlywed dreaming of kids.

When Jaycee turned three, it seemed like I had no choice. She had to go to pre-school. With her Down syndrome, she was so far behind and she needed all the experiences at pre-school that I couldn't provide (or didn't have the energy to do). So, she started the special education process right on her third birthday and received all of her needed therapies at school. I hated to send her to school. She seemed so small and young. We had been through so much together and it was hard to let go. Prior to school, Jaycee had only been watched by close family members. The school staff would be the first non-family people to watch my dear little girl.

Even though I hated the idea of sending her to school, I knew she needed to go. It would be good for both of us. I knew the school staff personally, which made sending her easier. We both cried the first week or two though when we left each other.

Flash forward a few years, it came time to have Elijah screened for pre-school last month. He didn't have a diagnosis or something wrong that absolutely made it necessary for him to start school so young. I did have  a few concerns with Elijah so I decided to get him screened in case he would happen to get in. He did get accepted into pre-school. I found myself getting ready to send my little 3 year boy to pre-school. This time was different. It was my choice. It felt like a happy milestone. I took him to school the first day. I may have had a few tears but it wasn't a heart-wrenching situation like with Jaycee.

This week Elijah started riding the bus. I never thought I'd send my 3 year old on the bus either. But, he's been begging to ride the bus ever since Jaycee started riding last year. (I cried my eyes out the first time Jaycee rode the bus.) He was so happy to get on it. I watched through the bus window as Elijah took a seat next to Jaycee on the bus. He had a huge smile. Then I realized I did too. It's funny how different things feel the second time around.
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Friday, September 21, 2012

Don't be afraid!

I was reading Mark chapter 5 this week and had to share my thoughts about it. Verse 21 starts the story out by talking about Jairus who pleaded with Jesus to go to his daughter who was at the point of death. He asks Jesus to come and lay hands on the girl. So they walk along and in the middle of this a woman with an issue of blood gets healed.

As Jesus finishes up with the woman, someone came from Jairus's house and said, "Your daughter is dead. Why trouble the Teacher any further?"

As soon as Jesus heard the word, he said to Jairus, "Do not be afraid, only believe."

Jesus then allowed a few people to follow him to the house to see the girl. There's more to this story, which includes the daughter being made alive and whole, but I want to stop there.

It was interesting that Jesus did not stop the bad report from coming to Jairus. I mean, he's Jesus, he surely knew it was coming. He could have stopped those people if he wanted to, right? He didn't stop them. So Jairus heard that his daughter was dead. His people encouraged him to give up and leave Jesus alone.

Jesus responded only to Jairus. He did not refute the report. He told him not to be afraid & only believe.

I found it interesting that Jesus first spoke to be him about his fear. Jairus hadn't yet had a response yet but Jesus probably knew that a parent would naturally fear for their child.

Jairus is now faced with a choice. He can freak out because his daughter is dead or he can believe in the words of Jesus and keep it together.

The next thing I took away was that Jesus had Jairus walk away from those people who gave him the bad report. They did not speak faith and Jesus had to separate Jairus from them.

I have had my fair share of bad and evil reports about my own daughter in the past 6 years:
  • Your daughter has asthma. She'll have breathing problems.
  • She will need a surgery to fix this.
  • If you don't do this procedure, there is a risk that she will die.
  • Her immune system is weak. She's going to get sick easy.
Whenever I hear something bad about my darling little girl, I have a tendancy to get upset and let my fears take over. Jesus doesn't want me to react like that. He wants me to be positive, believe in Him, and separate myself from unbelief (whatever form it may take). This is a big challenge for me. After so many bad, scary health problems, it is easier for me to believe something bad is going to happen than something good. Yet, God wants faith to rise up in these moments. Too often I wonder why the bad event is occuring in the first place and get stuck in a pity party. I think Jaycee should never get a bad report. But things happen that challenge our faith. God is always the response in situations that we find challenging. Belief in Him and His word is always the answer and is the ultimate truth. Now, don't be afriad!

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Thursday, September 13, 2012

Wanting Something

To celebrate Jaycee making it through the hospital, we got out of the house last week for some shopping. It wasn't my husband's definition of relaxation and fun but he went along. We found ourselves at the toy store and told the children they could each get a toy. As soon as Elijah found out the store had Thomas the train items, he was elated. He likes loves Thomas the train. He's borderline obsessed with it. It doesn't matter if it's soap, toothpaste, socks, or a book--if Thomas is on it, Elijah wants it. Here, you get the idea:

At the store, Elijah had to figure out which toy he wanted. He was so excited at the enormous amount of train items he hasn't collected yet. He ended up with the a signal for his wooden track. 

Taking Jaycee to a toy store is a different story. The only thing Jaycee ever wants from a store is a movie. She's six years old, but she doesn't really have an interest in any kind of a toy. She's been that way for a long time. I have spent lots of money over the years trying to find a toy that she would love and play with on her own. If I sit and play with her, she'll play with different toys. If I leave her alone in a room full of toys, she basically scatters them or sits and stares at the wall.

I know it's hard to believe but it's true. I have thought about why she is like this many times. Theory number 1: She started receiving weekly therapy at just 2 months old. Jaycee got use to having people lead her through activities at an early age and became dependant on that.  Theory number 2: Jaycee's fine motor skills are very poor. Any toy that requires using the hands like puzzles, coloring, blocks are all difficult for her. I once got her an adorable baby doll but she got frustrated when she couldn't get the baby bottle in the doll's tiny mouth. Fine motor skills are used everywhere. You just don't realize it until you have a child with fine motor issues.

So, taking Jaycee to a toy store usually results in nothing. I will show her toys and she usually swats them away. Sometimes, she will choose a toy but then throw it on the floor which tells me she doesn't like it. A few times, a selection has made it all the way to the shopping cart only for her to throw it out. Jaycee isn't the typical child. She doesn't want anything really. Elijah is the opposite. He sees things he likes and wants them!

At the store, I went straight to one of her favorite characters, Olivia, a pig in a cartoon she watches. I showed her several Olivia items including a 3 foot tall stuffed Olivia. She got a smile on her face. She checked out the toys but vetoed the giant Olivia. She finally selected two small stuffed Olivias. She picked them up and sat in her stroller. She held the "babies" all during Elijah's long selection process. I waited for her to chuck them at any moment but she didn't. She held them in the van too. She wanted to take them into the next store we went in. It was great to see her actually want something. Elijah does this all the time but not Jaycee. This is the kind of thing we enjoy seeing her do because it doesn't happen often.

Has she continued to play with her babies? A little bit but a little bit is more than she usually does. It's great! Here she is with her babies:

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Thursday, September 6, 2012

Being a roommate in the hospital

We made it through another emergency and hospital stay. Jaycee is home resting and recovering but overall doing well. A week in the hospital conjures up all sorts of feelings. Exhaustion is one of them. The hospital we use is very good at accommodating parents. I was fortunate enough to have had a couch like bench to sleep on during that week. It beats the chairs in some of the other rooms. Unfortunately, the floor we were on was loaded with other kids having asthma flare ups.

That meant the inevitable...a roommate. I always hope we won't get a roommate but it generally happens. That's part of being in the hospital, unless you are blessed enough to get the coveted private room. I really dislike having a roommate. First, your privacy (what little you have in a hospital) goes to nearly nothing. Someone behind the curtain can hear your phone conversations and anything else you say. We have overheard some very interesting conversations over the years. Second, when you have a roommate the curtain dividing the two beds gets pulled across the center of the room. It makes the already small room feel even smaller. After a few days, I feel like I'm going to suffocate in that tiny space. Third, you are often subject to your roommate's schedule. Your roommate may be a night owl and you may be an early riser. This causes some problems.

We have had several memorable roommates. There once was a boy who had ADHD who was in the hospital for a few nights following a seizure. He constantly messed with his bed. I heard the bed moving up and down all day and all night. It was funny when he would go in the bathroom and pull the cord that alerts the nurses of a problem. He did it every time!

Then there was the roommate who had RSV. It was a baby, of course, but Jaycee was in the hospital with RSV (when she was 5 years old) for the second year in a row. Hearing Jaycee's story (because the roommates can hear everything you tell the doctor) and seeing her breathe hard really freaked the parents out. They called the doctors in and asked them if their baby was going to have problems later on and if it was going to die. They were crying and freaking out. They got discharged the next day, so I think everything was fine. I felt sorry for them; they were so scared.

I could go on and on but I won't. I do want to offer some tips if you are ever in the hospital and sharing a room with someone. Thanks for the idea Karen!

How to be a good roommate when your kid is in the hospital:
1. Ask the hospital when their visiting hours are. Our hospital is from 9 am to 9 pm. Use these hours as a guideline for how loud your tv should be or how bright your lighting should be.
2. Consider how long the other person has been at the hospital. You may just be staying one night and want to stay up late. Your roommate may had a rough week or even longer. They may be exhausted. Just because the curtain is pulled in the room doesn't mean they can't magically hear your tv or voices talking.
3. If a patient in the room is sleeping, please be courteous. The patient may need rest due to their illness. If a patient is asleep, do your visiting in another room or whisper. This is not the time for three siblings and a baby to visit!
4. It is most polite to ask your roommate before adjusting the heat/air or turning on/off the main lights. Jaycee is very hot natured. Yet, one of our last roommates insisted on having the room fairly warm because the mom was cold! Which takes me to the next point....
5. The time in the hospital is not about your needs mom & dad. Yes, you matter but your child amd the one in the bed next to them is the most important thing. Sacrifice this time for them. If your child wants to watch cartoons, don't argue with them. They are stuck in a bed in a small room. They aren't having fun either. Buy a magazine or cards or something to occupy your time. Make yourself available to your child. One mom I once shared a room seemed to constantly come up with a reason not to be in the room (smoke break, phone call, errand). The poor kid was alone most of the time but I'm sure the mom didn't realize it.
6. Please do not sleep with the tv on all night. I don't care how low the volume is, the sound will carry. If your child needs the tv to sleep, please turn it to the lowest volume or off after they are sound asleep.
7. There is a rule on most floors of our hospital that if a patient is potty trained, then none of the family should use the bathroom in the patient's room. Family members are suppose to go to the public bathrooms down the hall. Please do not ask the patient's family to move bathroom necessaries so you can use the bathroom.

If you do all of these things, you are well on your way to becoming a well liked roommate.
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Saturday, September 1, 2012

Things to do in the hospital

When there is a lot of down time in the hospital, here is what I do to pass the time:

1. I look at my schedule and plan things out for the next week. Get a game plan for when we get home.
2. Go to the gift shop or cafeteria. Find a snack I haven't eaten in a long time. I forgot how good runts are!
3. Clean out my purse. Ditch all the expired coupons. Why do I have so many tokens for Chuck E. Cheese?
4. Read through magazines that I don't have time to read at home.  Find a recipe I'll use at home later. Yeah, right!
5. Time to go through my emails. I finally delete old emails for good. I read through all the emails I saved that had long attachments.
6. Time to delete old files off of my computer. I delete documents I haven't opened in a year. This is something I never do at home.
7. Update all the family and friends through the internet, texts, or phone. I forget who I tell what to. Sometimes things haven't changed and I'm in a bad mood, so I don't tell anyone anything.
8. You tube: I never go on this website unless we are in the hospital. I watch music videos from Toby Mac.
9. Play solitaire on the computer. I generally lose.
10. Obsessively pick up things around the room. I rearrange stuff in the suitcase. I wish I had clorox wipes so I could really clean things up in her room. Then I wonder why my brain wishes for clorox wipes. Is there something wrong with that?

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