I am often asked, "How do you do it?"
This question is asked in several different contexts:
-How do you work with children with delays and disabilities and come home to a child with special needs?
-How do you work part time, keep up with the household duties, and take care of Jaycee's needs?
-How do you handle all of Jaycee's frequent illnesses and hospital admissions?
-How do you work when Jaycee needs breathing treatments around the clock every four hours during illnesses?
-How do you deal with the stress of having a child who is frequently ill?
-How do you make time for yourself?
Sometimes, I can handle illnesses and situations that come up really well. I make adjustments. I find time to sneak in a nap while Jaycee watches a movie next to me. I make sure the laundry gets done by getting up really early and starting it. I make super easy meals or just bake frozen entrees. When times are crazy, I try to simplify my life and accomplish the high priority items first.
There are other times, when I don't handle things well. I might snap at a family member because I'm stressed and tired. I might cry over something that doesn't deem that strong of an emotional response. I do the laundry, but it stays in a pile in the living room. Yes, there are times I don't handle "it" well.
Throughout my easy or difficult days, I pray, ask God for help, read scripture, and listen to Christian music. Most of the time, it helps me stay calm and keep a better perspective. Sometimes, despite my best intentions I fall down into a negative spiral. I think, "If only those people who believe I'm so great & wonderful at handling everything could see me now! They'd know the truth."
So, how do I do it?
The answer is simple.
I take it one day at a time. There is no magical method or strategy I use. Life is sometimes full of challenges that you have to just simply live through. I can't give up, quit my job, or not do Jaycee's medicines or doctor's appointments. Tasks have to be accomplished, medicine has to be given even if it's at 2 am, and duties need to be taken care of. I simply do things because they demand to be done. Yes, there are times I have breakdowns but I am not broken down. It is all temporary emotions and trials. I have been through challenging times before. I survived. I made it before. I'll make it again.
And, that is how I do it!
Thursday, February 27, 2014
Wednesday, February 12, 2014
A Birthday Celebration
A few months ago back in September, our daughter spent 3 weeks in ICU on a ventilator looking like this. We didn't know if she would make. In fact, there were moments when it looked like she wasn't. We were offered the chaplain and given offers to call our family in to see her.
We prayed. We hoped. And things finally got better.
And here is Jaycee now. Celebrating her 8th birthday on February 17th. This has been a birthday with many reasons to celebrate. We are so thankful to be celebrating her birth, her life, and her future! Happy Birthday, sweetie!
When Jaycee's Tonsils Came Out
Whenever someone tells me their child is getting their tonsils taken out, I cringe. If they ask, I tell them our story.
Back in 2009, Jaycee's cardiologist noticed she had some high pulmonary pressures. "This could be caused from sleep apnea. Has she ever had a sleep study?"
She hadn't but one was scheduled soon afterwards. That first sleep study was torture for me, her, and the sleep lab technician but she did get enough hours of sleep recorded in order for a determination to be made.
Sure enough, she had obstructive sleep apnea.
Since her tonsils were so large that they were "kissing," it was no surprise that her Ear Nose & Throat doctor (ENT) wanted to perform a tonsil and adenoidectomy. This is a fairly common issue with Down syndrome. The surgery was discussed and explained. A surgery was scheduled.
Prior to the surgery, I was nervous. Jaycee was 3 years old. She had a high pain tolerance and wasn't able to communicate pain well. She was a poor drinker on a good day. I had to often sit with Jaycee and make her drink from a soft top sippy cup a few times a day much like you do a baby. After the surgery, she would need to stay hydrated and I feared this would be hard. I was also in my last trimester of my pregnancy, so that probably contributed to some of my pre-surgery anxiety.
The surgery date came. Things were removed in the hope that her sleep apnea would be cured. I believe she spent a night in the hospital before being discharged home. The recovery at home was brutal. She refused to eat or drink. I took syringes of liquid and pleaded with her to drink a teaspoon or less every hour. I tried every drink and liquid I could think of. There were moments when I was really successfully, but mainly I was not. She started getting dehydrated. I think we went to the emergency room twice, once for fluids and once for a stronger pain medication.
About 10 days after her surgery, we were trying to get Jaycee to bed. She kept getting up and opening her door. I finally got really frustrated and went to her room determined to get her to sleep. When I opened the door, there was blood on Jaycee, the wall, her carpet. It looked like a crime scene. We were warned prior to the surgery that a post-surgical hemorrhage rarely happens but if it does, it can be deadly. Go to the emergency room immediately. I remember those words of warning.
We quickly loaded her in the car and drove to the nearest emergency room. Fortunately, Jaycee's bleeding stopped spontaneously before we got to the hospital. That was a blessing! As a result of the stress and panic, I started having contractions. I was 37 weeks pregnant and soon became concerned that I was going to be in a hospital bed too. We spent all night in the emergency room waiting to be admitted for a full 24 hour observation. Thankfully, there was no more bleeding. In fact, she finally started eating and drinking. It seemed that she was finally recovering from the surgery.
We took Jaycee home, I was exhausted and still having contractions. A few hours after we got home from the hospital, we decided to take me to my hospital. The next day, Elijah came into the world. So the story of Jaycee's tonsillectomy is coincidentally the beginning of Elijah's birth story.
And in the end.... She had a follow up sleep study to make sure the surgery "cured" her obstructive sleep apnea. Surprisingly, she still had obstructive sleep apnea and at 3.5 years old, Jaycee started using a bi-pap machine.
When I tell my story, I don't want people to be afraid or to talk them out of it. But, I try to remind them that sometimes things go wrong, that the recovery may not be "routine," and the result may not be what you expect.
Back in 2009, Jaycee's cardiologist noticed she had some high pulmonary pressures. "This could be caused from sleep apnea. Has she ever had a sleep study?"
She hadn't but one was scheduled soon afterwards. That first sleep study was torture for me, her, and the sleep lab technician but she did get enough hours of sleep recorded in order for a determination to be made.
Sure enough, she had obstructive sleep apnea.
Since her tonsils were so large that they were "kissing," it was no surprise that her Ear Nose & Throat doctor (ENT) wanted to perform a tonsil and adenoidectomy. This is a fairly common issue with Down syndrome. The surgery was discussed and explained. A surgery was scheduled.
Prior to the surgery, I was nervous. Jaycee was 3 years old. She had a high pain tolerance and wasn't able to communicate pain well. She was a poor drinker on a good day. I had to often sit with Jaycee and make her drink from a soft top sippy cup a few times a day much like you do a baby. After the surgery, she would need to stay hydrated and I feared this would be hard. I was also in my last trimester of my pregnancy, so that probably contributed to some of my pre-surgery anxiety.
The surgery date came. Things were removed in the hope that her sleep apnea would be cured. I believe she spent a night in the hospital before being discharged home. The recovery at home was brutal. She refused to eat or drink. I took syringes of liquid and pleaded with her to drink a teaspoon or less every hour. I tried every drink and liquid I could think of. There were moments when I was really successfully, but mainly I was not. She started getting dehydrated. I think we went to the emergency room twice, once for fluids and once for a stronger pain medication.
About 10 days after her surgery, we were trying to get Jaycee to bed. She kept getting up and opening her door. I finally got really frustrated and went to her room determined to get her to sleep. When I opened the door, there was blood on Jaycee, the wall, her carpet. It looked like a crime scene. We were warned prior to the surgery that a post-surgical hemorrhage rarely happens but if it does, it can be deadly. Go to the emergency room immediately. I remember those words of warning.
We quickly loaded her in the car and drove to the nearest emergency room. Fortunately, Jaycee's bleeding stopped spontaneously before we got to the hospital. That was a blessing! As a result of the stress and panic, I started having contractions. I was 37 weeks pregnant and soon became concerned that I was going to be in a hospital bed too. We spent all night in the emergency room waiting to be admitted for a full 24 hour observation. Thankfully, there was no more bleeding. In fact, she finally started eating and drinking. It seemed that she was finally recovering from the surgery.
We took Jaycee home, I was exhausted and still having contractions. A few hours after we got home from the hospital, we decided to take me to my hospital. The next day, Elijah came into the world. So the story of Jaycee's tonsillectomy is coincidentally the beginning of Elijah's birth story.
And in the end.... She had a follow up sleep study to make sure the surgery "cured" her obstructive sleep apnea. Surprisingly, she still had obstructive sleep apnea and at 3.5 years old, Jaycee started using a bi-pap machine.
When I tell my story, I don't want people to be afraid or to talk them out of it. But, I try to remind them that sometimes things go wrong, that the recovery may not be "routine," and the result may not be what you expect.
Wednesday, February 5, 2014
The Real Jaycee
Get to know my amazing daughter, Jaycee!
Favorite foods: Pizza, spaghetti, cake, mashed potatoes (no gravy), chips & salsa
Favorite time of day when we are home: 1-3 pm "nap time" which consists of her laying on my bed watching movies
Least favorite time of day: mornings, especially if it's before 8 am
Favorite things to do outside: swinging, swimming, and wandering around
Thing she gets in trouble for the most: not listening to instructions (i.e. Go to the bathroom for your shower.)
Favorite color: green
Favorite television shows and movies: Barney, Winnie the Pooh, Peppa Pig, Olivia, and Madagascar
Places she likes to go: 1. School 2. Any restaurant 3. Grandma's House 4. Church
Least favorite school subject: Phonics!!
Items Jaycee has to sleep with: her 2 Olivia the pig dolls. She meticulously places them on her pillow before sliding between them when going to sleep.
Item Jaycee can't live without: a television
Things Jaycee is obsessive-compulsive about: 1. the placement of her Olivia dolls at night 2. her post-dinner night routine 3. Where she stands in the morning to get dressed (in the hallway right in front of the steps)
3 Chores Jaycee does at home: 1. Setting the table for meals 2. Putting her dirty clothes in the hamper 3. Putting her dishes in the dishwasher
Things that scare Jaycee: Animals that get too close to her, walking into the emergency room at the Children's hospital, darkness in a public place (like a movie theater), Generally people dressed up in costumes
The best things about Jaycee: She's loving. She has a tender heart. She's happy even when she's really sick. She almost never has a "bad" day. She gives great hugs.
Favorite foods: Pizza, spaghetti, cake, mashed potatoes (no gravy), chips & salsa
Favorite time of day when we are home: 1-3 pm "nap time" which consists of her laying on my bed watching movies
Least favorite time of day: mornings, especially if it's before 8 am
Favorite things to do outside: swinging, swimming, and wandering around
Thing she gets in trouble for the most: not listening to instructions (i.e. Go to the bathroom for your shower.)
Favorite color: green
Favorite television shows and movies: Barney, Winnie the Pooh, Peppa Pig, Olivia, and Madagascar
Places she likes to go: 1. School 2. Any restaurant 3. Grandma's House 4. Church
Least favorite school subject: Phonics!!
Items Jaycee has to sleep with: her 2 Olivia the pig dolls. She meticulously places them on her pillow before sliding between them when going to sleep.
Item Jaycee can't live without: a television
Things Jaycee is obsessive-compulsive about: 1. the placement of her Olivia dolls at night 2. her post-dinner night routine 3. Where she stands in the morning to get dressed (in the hallway right in front of the steps)
3 Chores Jaycee does at home: 1. Setting the table for meals 2. Putting her dirty clothes in the hamper 3. Putting her dishes in the dishwasher
Things that scare Jaycee: Animals that get too close to her, walking into the emergency room at the Children's hospital, darkness in a public place (like a movie theater), Generally people dressed up in costumes
The best things about Jaycee: She's loving. She has a tender heart. She's happy even when she's really sick. She almost never has a "bad" day. She gives great hugs.
Wednesday, January 29, 2014
The Big Bad Flu
During every flu season, I always hear moms debating whether or not their child should receive the flu vaccine. I usually let the moms tell their reasons why they are for or against the vaccine. When they are done, I then chime in.
"Well, the flu nearly killed Jaycee. So, yes I always make sure my kids get the flu vaccine."
In 2011, Jaycee came down with the H1N1 flu virus. I didn't know she had this until we ended up at the emergency room. The flu virus somehow triggered a fast heart rate, which led to us discovering she had Wolff-Parkinson White syndrome. For that story, read my previous post. A helicopter from the Children's hospital came to get Jaycee since she was in such distress. She was admitted to the hospital.
The fact is that even though Jaycee received the flu vaccine, she ended up getting the flu. I guess you could look at this in 1 of 2 ways: 1. Maybe the vaccine doesn't work and isn't worth doing or 2. Maybe the flu can be very serious and the vaccine may decrease your chance of ending up in the emergency room and being admitted into the hospital.
For me, I look at it from the second perspective. It seems Jaycee catches illnesses easily, so I have gotten the vaccine for her, my son, and myself every year to help put the odds in our favor.
Last year, my son spiked a 104 fever and was obviously very sick. Our doctor told me to get to the hospital to have him swabbed to make sure he didn't have the flu. Sure enough, he had the flu virus even though he had received the flu vaccine. But, Jaycee and I didn't get it. I felt that was a miracle! Jaycee drinks from her brother's cup all the time, so I was sure she'd come down with it. Elijah and my husband were both laid out for a few days with the flu. But the girls stayed strong!
So after having the flu affect people in my home in two different flu seasons, I know how harsh and serious the flu can get. I know I never want someone in my family to get it. And I'm always relieved when the flu season is over!
"Well, the flu nearly killed Jaycee. So, yes I always make sure my kids get the flu vaccine."
In 2011, Jaycee came down with the H1N1 flu virus. I didn't know she had this until we ended up at the emergency room. The flu virus somehow triggered a fast heart rate, which led to us discovering she had Wolff-Parkinson White syndrome. For that story, read my previous post. A helicopter from the Children's hospital came to get Jaycee since she was in such distress. She was admitted to the hospital.
The fact is that even though Jaycee received the flu vaccine, she ended up getting the flu. I guess you could look at this in 1 of 2 ways: 1. Maybe the vaccine doesn't work and isn't worth doing or 2. Maybe the flu can be very serious and the vaccine may decrease your chance of ending up in the emergency room and being admitted into the hospital.
For me, I look at it from the second perspective. It seems Jaycee catches illnesses easily, so I have gotten the vaccine for her, my son, and myself every year to help put the odds in our favor.
Last year, my son spiked a 104 fever and was obviously very sick. Our doctor told me to get to the hospital to have him swabbed to make sure he didn't have the flu. Sure enough, he had the flu virus even though he had received the flu vaccine. But, Jaycee and I didn't get it. I felt that was a miracle! Jaycee drinks from her brother's cup all the time, so I was sure she'd come down with it. Elijah and my husband were both laid out for a few days with the flu. But the girls stayed strong!
So after having the flu affect people in my home in two different flu seasons, I know how harsh and serious the flu can get. I know I never want someone in my family to get it. And I'm always relieved when the flu season is over!
Wednesday, January 22, 2014
Siblings, Friends
That makes Elijah mad. He'll say, "Mom, I want to hold sissy's hand, and she won't do it."
I encourage Jaycee to hold hands with her brother. She usually gives in and does it. Sometimes, they hold hands almost the entire way home (about 20 minutes). They really like each other. It's an answer to a prayer.
I often pray that Elijah will grow up to love and appreciate his sister. Given that her hospital admissions, doctor's appointments, and illnesses means that his mommy time is cut short, I pray that he can have a positive attitude through it all without feeling any sort of resentment now or in the future. I pray that he'll appreciate his role in this family and his sister's role in the family.
So, it's encouraging to see them hold hands, hug, and play together. They aren't just siblings; they are friends.
Wednesday, January 15, 2014
Make it Happen
"We are going to make this happen," I said out loud while getting ready to go out.
My husband naturally asked, "Make what happen?"
"Whoops! Did I say that out loud? I guess I did since you heard it," I said.
I normally don't talk to myself like that. I had been in prayer for awhile that morning. It was the first day of this new year. I was asking God about goals for the year and the timing of things that have been on my heart for awhile now.
I had a really good prayer time with God. During that prayer time, God showed me how I put things off for a time when Jaycee's health is better or when things are calm for a long period of time. There isn't hardly ever a "good time" for me. I realized that I have just let some dreams remain dreams because I never did anything to get the ball rolling. I have read before that dreams are merely wishes if you never put any effort into them or do anything with them.
I also realized that I have become pessimistic. I actually knew that before the prayer time, but I didn't realize how it was affecting me entirely. I remembered back when Jaycee was being released from the hospital after a 4 week admission just a few months ago. She was so weak; she couldn't walk or do almost anything she did before being in the hospital. I sat around and thought of all the reasons why it was a bad idea to bring her home: our house isn't wheelchair accessible, she can't sit or stand for a bath, she can't use the potty, I am already sore from trying to move and lift her here, she will require nearly constant supervision, she will take medicine every couple of hours around the clock.... My husband is the one who told me that we could do it and make things happen to bring her home. And we did. It was hard but it was only for a season and it was the right decision. On my own though, I couldn't think of one positive thing that would come from bringing her home in that condition.
But, there are other ways I'm pessimistic. Just a few weeks ago, my friend mentioned going to the beach in an upcoming trip. I said, "That sounds like a nightmare." When she asked why, I started out my wonderful list: I can't use Jaycee's stroller in the sand, she has been irritated with sand being on her before, she can't swim, my son can't swim, it may be crowded, she might run off... The beach? Without thinking, the answer is NO!
The prayer time with God showed me that instead of making my list of why something won't work or why something is a bad idea, I should be thinking of ways to make it happen. I shouldn't be afraid of new experiences and let my family miss out because I can think of a dozen or more ways why something could be too hard. In other words, I need to have a mind shift.
So, as I was pondering what God was showing me and as I thought about things I have put off, I said, "We are going to make this happen," while putting my shoes on with my husband standing next to me.
I explained it to my husband. And now, it is our family motto for the year. We've never had a family motto but now is a good time to start one. Let's see what we can make happen this year. As for the beach, I'm still praying about it. I might even need to fast about that one!
My husband naturally asked, "Make what happen?"
"Whoops! Did I say that out loud? I guess I did since you heard it," I said.
I normally don't talk to myself like that. I had been in prayer for awhile that morning. It was the first day of this new year. I was asking God about goals for the year and the timing of things that have been on my heart for awhile now.
I had a really good prayer time with God. During that prayer time, God showed me how I put things off for a time when Jaycee's health is better or when things are calm for a long period of time. There isn't hardly ever a "good time" for me. I realized that I have just let some dreams remain dreams because I never did anything to get the ball rolling. I have read before that dreams are merely wishes if you never put any effort into them or do anything with them.
I also realized that I have become pessimistic. I actually knew that before the prayer time, but I didn't realize how it was affecting me entirely. I remembered back when Jaycee was being released from the hospital after a 4 week admission just a few months ago. She was so weak; she couldn't walk or do almost anything she did before being in the hospital. I sat around and thought of all the reasons why it was a bad idea to bring her home: our house isn't wheelchair accessible, she can't sit or stand for a bath, she can't use the potty, I am already sore from trying to move and lift her here, she will require nearly constant supervision, she will take medicine every couple of hours around the clock.... My husband is the one who told me that we could do it and make things happen to bring her home. And we did. It was hard but it was only for a season and it was the right decision. On my own though, I couldn't think of one positive thing that would come from bringing her home in that condition.
But, there are other ways I'm pessimistic. Just a few weeks ago, my friend mentioned going to the beach in an upcoming trip. I said, "That sounds like a nightmare." When she asked why, I started out my wonderful list: I can't use Jaycee's stroller in the sand, she has been irritated with sand being on her before, she can't swim, my son can't swim, it may be crowded, she might run off... The beach? Without thinking, the answer is NO!
The prayer time with God showed me that instead of making my list of why something won't work or why something is a bad idea, I should be thinking of ways to make it happen. I shouldn't be afraid of new experiences and let my family miss out because I can think of a dozen or more ways why something could be too hard. In other words, I need to have a mind shift.
So, as I was pondering what God was showing me and as I thought about things I have put off, I said, "We are going to make this happen," while putting my shoes on with my husband standing next to me.
I explained it to my husband. And now, it is our family motto for the year. We've never had a family motto but now is a good time to start one. Let's see what we can make happen this year. As for the beach, I'm still praying about it. I might even need to fast about that one!
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