Today is December 12, 2012, the thirty-third anniversary of Holly's diagnosis. In 1979, it was the day before her seven month birthday. Every year since then I have grieved as I remembered the devastation of learning that Holly had cystic fibrosis. This year, however, I have decided to focus on the positive ramifications of that diagnosis.
There's no denying that learning my daughter had a chronic and fatal disease was unspeakably painful, the news was also, in a way, a relief. Now we had a name for the cause of the awful problems she'd experienced, and, with that name, came the knowledge of how to help her.
For seven months, my baby girl had struggled to gain weight and suffered with excruciating stomach cramps. She could only sleep at night if I lay on my back on the sofa with a hot towel between our tummies to ease the pain.
Holly was a beautiful baby from the time she was born. At the nursery window in the hospital, her daddy's friend had to make a way for him through the group of people crowded around in front of her bassinet to admire this lovely little girl. However, some days her healthy pink color would change abruptly to a deathly gray, which would snatch my breath away.
Most babies have a sweet scent that adults love. I noticed very early on that Holly didn't smell sweet at all even immediately after a bath. For some odd reason, that little detail made me very sad. Perhaps, it forced me to face the fact that something really was wrong with my precious baby girl. I also observed that she tasted salty when I kissed her, and, when she cried, her tears left tracks of salt behind on her cheeks. Unfortunately, I was unaware of the significance of that one fact, so I told family members but never mentioned it to the pediatrician.
At seven months old, she had only recently begun to eat more than rice cereal. However, because her body didn't produce the enzymes necessary to produce her food, no matter how much she ate, her little tummy never felt full. The amount of food she consumed was astonishing considering her age. No matter how much I fed her, she always cried for more. It had gotten to the point that her plate of food equaled mine, and she still didn't gain weight. When I fed her eight ounces of formula, she would scream for more. But, I quickly learned that if I gave her more, she threw it up, because it was too much for her little tummy. She was malnourished and weak.
Finally, on Dec. 12, my big sister called and forced herself to overcome her fears of offending me by telling me that I must call Holly's pediatrician and insist on a sweat test. God's perfect timing made me open to what she had to say; I had read an article the day before mentioning that the taste of salt on babies often indicated a disease I knew little about called cystic fibrosis. She instructed me to hang up from talking to her and immediately call my doctor. As we talked, he started in with his usual arguments until I interrupted him, saying, "But she tastes salty." He responded, "Oh, my god. I'll call Children's Medical Center immediately to set up a sweat test." I wrote about that day in my previous blog post.
Though the diagnosis was devastating, the good news was: now we knew there were treatments to help her. The lung disease, which had not caused problems yet, could be slowed. What a relief we experienced when we learned that, by using pre-digested formula and artificial enzymes to digest her food, the awful stomach cramps would stop immediately! She would gain weight!
Our guilt and frustration over our inability to help our daughter were instantly relieved with the knowledge that we could help her. Yes, we were forced to face the long-term realities of CF, but part of the reality was that the treatments available were going to make her better.
And they did. At that time, when children were diagnosed with CF, they were immediately admitted to the hospital. Actually, we were told that the whole family was being admitted in order to learn about CF and how to care for her. The nurse brought Holly's first bottle of pre-digested formula and told me that it smelled and tasted awful. I smelled it and decided to take her word on the taste. She said that Holly probably would refuse it until she figured out she wasn't getting anything else. She was wrong. I took Holly in my arms, offered her the bottle and, instead of refusing it, she sucked it down, hardly breathing, because she was so hungry. When she finished the bottle and I set it down on the counter, she smiled! The nurse was as incredulous as I. Holly smiled at the bottle, because, for the first time her seven-month-old life, her tummy was full. My heart burst with happiness and relief.
In the first month after her diagnosis, Holly gained two pounds. Two pounds! She gained energy. Our nights on the sofa with the hot towel ended. Now, we could put her down to sleep in her crib with a full tummy.
Of course, we struggled with the realities that the average life expectancy was only 18 and the problems that would inevitably be part of her life. We had no way of knowing that, at 33, she would be married with an amazing daughter and still doing well.
So with that perspective, today on the thirty-third anniversary of her diagnosis, I've decided to celebrate. As Holly put it, "Instead of a death knell it was a starting gun." What could I possibly add to that?
Wednesday, December 12, 2012
Wednesday, December 5, 2012
Dreams Come True
The 33rd anniversary of Holly's diagnosis is coming up on December 12. She was diagnosed one day before her seven-month birthday. This is always a hard time for me. I can't held but go back to that day.
Actually, I must begin a couple of days before the diagnosis with a phone call from my sister. who bravely called to insist that I call our pediatrician and demand a sweat test. She had just spent time with us at Thanksgiving and had seen how much Holly ate, experienced the awful digestive problems she had and realized that in spite of the huge volume of food (Holly would consume a plate of food equal to what the adults ate.), she was still gaining no weight. So, Robyn, was willing to offend me for the sake of the life of my child, and I love her for that. Fortunately, God's timing is always perfect, and the day before Robyn called, I had read an article about CF and how kids with the disease often taste salty. That was something I had commented on for months but had never relayed to the doctor, not realizing it was of any significance.
Thus, when my sister called about the sweat test, I knew she was right. I knew I had to call Holly's doctor yet again and tell him that something was wrong with my child. Robyn was willing to pay for a flight to her home where her pediatrician had already agreed to do a sweat test if ours was not.
When Holly's pediatrician called me back, he started in with the same old song and dance of "normal is a range," etc., etc., until I said the magic words, "But she tastes salty." Then, he was momentarily silent before quietly declaring, "Oh, my God. I'll call Children's Medical Center immediately to schedule a sweat test as soon as possible. They'll call you back with an appointment."
Two days later my mother's cousin picked us up to take us to Children's Medical Center in Dallas for the sweat test, so I wouldn't have to endure the anxiety of the day and the bad news, if it came to that, alone. We went to Children's and the tech patiently explained the procedure, and I was relieved that Holly didn't have to be stuck and wouldn't feel pain. The tech cleaned Holly's wrists, stimulated them with the electrodes, put on the gauze (which had first been weighed), and then wrapped her arms with plastic wrap to encourage perspiration.
We spent about half an hour in the hallway trying to keep my little one occupied. She was an active baby who had bursts of energy in which she was busy sitting up, crawling, trying to stand and playing. Because of malnutrition, her energy usually didn't last long before she just wanted to be held or take a nap. At that particular time, wouldn't you know it, she wanted to play on the floor, of course. But all I could think of is: "This is a hospital, for goodness' sake. There couldn't be a worse place for her to be on the floor. I'm not putting my baby down there!" So, we passed her back and forth and took walks up and down the hallways, trying to engage her in anything that looked even remotely interesting. Fortunately, she was a beautiful and winsome child to whom people were naturally drawn, so we were able to occupy her with the help of other people who found her almost as delightful as I did.
Finally the time passed, the plastic wrap was unwrapped and the gauze was weighed to determine whether it contained enough sweat to test. Fortunately the answer was yes, and we were allowed to go.
My cousin decided to treat me to lunch at a lovely tea room, which I could never have visited on my budget. She wanted to take my mind off what was going on, so we went to this swanky eatery, which seriously frowned on the presence of babies. The maitre d protested, but was no match for my cousin who always managed to drop names, threaten, cajole or intimidate until she got her way, so we were seated in the calm, darkened interior and served wonderful entrees that I didn't taste or enjoy, because my mind was focused on the results of the test. We talked and talked. Anything to take our minds of the waiting, the endless waiting, for the test results.
The somber tone of the day was punctuated with humor, however, when I took Holly with me to the Ladies' Room. It was only then that I discovered that my face and neck were covered in orange splotches from the puréed peaches I'd fed her as I held her on my lap. (Since the tea room didn't normally allow babies, there were no high chairs for her, so she sat with me as we ate.) Naturally, I was horrified as I tried to remove the dried peaches from my face with one hand as I held Holly with the other while sophisticated ladies in their designer dresses and de rigeuer haughty looks came and went as I remained trying desperately to scrub away the last of my daughter's meal. Though mortifying at the time, it gave my cousin and I something to laugh about as we returned to the car.
I have no idea how we spent the rest of the day. I just remember the mental argument that ran over and over through my mind: "It can't possibly be something as bad as cystic fibrosis. I mean this is me. This is us -- our baby. It couldn't happen to us, could it? But the symptoms all fit. It would explain everything. But, surely, it's something simpler, not something quite so serious," though at the time I had no idea just how serious CF was.
Finally we were home. Holly was exhausted, so I put her down in her crib to sleep. I thought I would lose my mind as I waited for the phone call. Thirty minutes, 45 minutes, an hour, an hour and a half passed as we waited past the time we were promised an answer. Finally, I called the hospital and was told I'd have to wait until the morning to get the answer from Holly's pediatrician. I didn't think I could survive the night without an answer. Turns out I should have forced myself to wait.
I called our doctor's colleague, who agreed to get the results and call us. I waited by the phone as my cousin sat close by. The phone rang and I grabbed it to hear the doctor's voice inform me that the test was positive. Holly had cystic fibrosis. Instead of being kind and leaving me in my blissful ignorance until we saw Holly's doctor in the morning, he felt compelled to fill in all the details. He had never met me, had no idea of my mental or emotional state and didn't ask if I was alone or had someone with me. This cruel and uneducated professional proceeded to tell me that my 7-month-old daughter sleeping in the next room would probably die before her second birthday. I slumped against the stove as the life literally drained out of me. I remember that I was standing upright, and, then when he told me that, I felt as if a tidal wave of grief washed over me. The pain was so intense and overwhelming that I knew I could not survive it, and then I felt the life force drain out of me. I felt it leave my head and wash down through my body and out my feet. All that remained was my mental capacity to deal rationally with what to do next. All emotion had vanished.
As I hung up the phone, I told my cousin, "Holly has cystic fibrosis, and the doctor says she'll probably die before she's two. It will be time for dinner soon. I'd better get started on it." And that was that. I was in shock -- emotional shock -- a gracious coping mechanism God built in so we can cope with just such situations.
Somehow, we got through that awful night and went to visit the pediatrician the next morning. He was pale and somber, and the guilt he felt was palpable. He shook his head as he apologized and said, "I can't believe I missed it. I'm so sorry."
The good news was he educated us about the true facts of CF. It seemed strange to be relieved to learn that the average life expectancy was 18 years old. But, after the news of the night before, it felt like a reprieve from a death sentence. There was much more to learn and more to live. But here we are, happily, 33 years later. Holly's feeling the effects of CF, but she's achieved the dreams she once thought might be out of reach. She's married to a man whom she loves and who adores her. They have a precious 10-year-old daughter who is the light of both their lives. What was only a dream that I was afraid to hope for 33 years ago, has become reality, and I thank God for dreams that sometimes do come true.
Actually, I must begin a couple of days before the diagnosis with a phone call from my sister. who bravely called to insist that I call our pediatrician and demand a sweat test. She had just spent time with us at Thanksgiving and had seen how much Holly ate, experienced the awful digestive problems she had and realized that in spite of the huge volume of food (Holly would consume a plate of food equal to what the adults ate.), she was still gaining no weight. So, Robyn, was willing to offend me for the sake of the life of my child, and I love her for that. Fortunately, God's timing is always perfect, and the day before Robyn called, I had read an article about CF and how kids with the disease often taste salty. That was something I had commented on for months but had never relayed to the doctor, not realizing it was of any significance.
Thus, when my sister called about the sweat test, I knew she was right. I knew I had to call Holly's doctor yet again and tell him that something was wrong with my child. Robyn was willing to pay for a flight to her home where her pediatrician had already agreed to do a sweat test if ours was not.
When Holly's pediatrician called me back, he started in with the same old song and dance of "normal is a range," etc., etc., until I said the magic words, "But she tastes salty." Then, he was momentarily silent before quietly declaring, "Oh, my God. I'll call Children's Medical Center immediately to schedule a sweat test as soon as possible. They'll call you back with an appointment."
Two days later my mother's cousin picked us up to take us to Children's Medical Center in Dallas for the sweat test, so I wouldn't have to endure the anxiety of the day and the bad news, if it came to that, alone. We went to Children's and the tech patiently explained the procedure, and I was relieved that Holly didn't have to be stuck and wouldn't feel pain. The tech cleaned Holly's wrists, stimulated them with the electrodes, put on the gauze (which had first been weighed), and then wrapped her arms with plastic wrap to encourage perspiration.
We spent about half an hour in the hallway trying to keep my little one occupied. She was an active baby who had bursts of energy in which she was busy sitting up, crawling, trying to stand and playing. Because of malnutrition, her energy usually didn't last long before she just wanted to be held or take a nap. At that particular time, wouldn't you know it, she wanted to play on the floor, of course. But all I could think of is: "This is a hospital, for goodness' sake. There couldn't be a worse place for her to be on the floor. I'm not putting my baby down there!" So, we passed her back and forth and took walks up and down the hallways, trying to engage her in anything that looked even remotely interesting. Fortunately, she was a beautiful and winsome child to whom people were naturally drawn, so we were able to occupy her with the help of other people who found her almost as delightful as I did.
Finally the time passed, the plastic wrap was unwrapped and the gauze was weighed to determine whether it contained enough sweat to test. Fortunately the answer was yes, and we were allowed to go.
My cousin decided to treat me to lunch at a lovely tea room, which I could never have visited on my budget. She wanted to take my mind off what was going on, so we went to this swanky eatery, which seriously frowned on the presence of babies. The maitre d protested, but was no match for my cousin who always managed to drop names, threaten, cajole or intimidate until she got her way, so we were seated in the calm, darkened interior and served wonderful entrees that I didn't taste or enjoy, because my mind was focused on the results of the test. We talked and talked. Anything to take our minds of the waiting, the endless waiting, for the test results.
The somber tone of the day was punctuated with humor, however, when I took Holly with me to the Ladies' Room. It was only then that I discovered that my face and neck were covered in orange splotches from the puréed peaches I'd fed her as I held her on my lap. (Since the tea room didn't normally allow babies, there were no high chairs for her, so she sat with me as we ate.) Naturally, I was horrified as I tried to remove the dried peaches from my face with one hand as I held Holly with the other while sophisticated ladies in their designer dresses and de rigeuer haughty looks came and went as I remained trying desperately to scrub away the last of my daughter's meal. Though mortifying at the time, it gave my cousin and I something to laugh about as we returned to the car.
I have no idea how we spent the rest of the day. I just remember the mental argument that ran over and over through my mind: "It can't possibly be something as bad as cystic fibrosis. I mean this is me. This is us -- our baby. It couldn't happen to us, could it? But the symptoms all fit. It would explain everything. But, surely, it's something simpler, not something quite so serious," though at the time I had no idea just how serious CF was.
Finally we were home. Holly was exhausted, so I put her down in her crib to sleep. I thought I would lose my mind as I waited for the phone call. Thirty minutes, 45 minutes, an hour, an hour and a half passed as we waited past the time we were promised an answer. Finally, I called the hospital and was told I'd have to wait until the morning to get the answer from Holly's pediatrician. I didn't think I could survive the night without an answer. Turns out I should have forced myself to wait.
I called our doctor's colleague, who agreed to get the results and call us. I waited by the phone as my cousin sat close by. The phone rang and I grabbed it to hear the doctor's voice inform me that the test was positive. Holly had cystic fibrosis. Instead of being kind and leaving me in my blissful ignorance until we saw Holly's doctor in the morning, he felt compelled to fill in all the details. He had never met me, had no idea of my mental or emotional state and didn't ask if I was alone or had someone with me. This cruel and uneducated professional proceeded to tell me that my 7-month-old daughter sleeping in the next room would probably die before her second birthday. I slumped against the stove as the life literally drained out of me. I remember that I was standing upright, and, then when he told me that, I felt as if a tidal wave of grief washed over me. The pain was so intense and overwhelming that I knew I could not survive it, and then I felt the life force drain out of me. I felt it leave my head and wash down through my body and out my feet. All that remained was my mental capacity to deal rationally with what to do next. All emotion had vanished.
As I hung up the phone, I told my cousin, "Holly has cystic fibrosis, and the doctor says she'll probably die before she's two. It will be time for dinner soon. I'd better get started on it." And that was that. I was in shock -- emotional shock -- a gracious coping mechanism God built in so we can cope with just such situations.
Somehow, we got through that awful night and went to visit the pediatrician the next morning. He was pale and somber, and the guilt he felt was palpable. He shook his head as he apologized and said, "I can't believe I missed it. I'm so sorry."
The good news was he educated us about the true facts of CF. It seemed strange to be relieved to learn that the average life expectancy was 18 years old. But, after the news of the night before, it felt like a reprieve from a death sentence. There was much more to learn and more to live. But here we are, happily, 33 years later. Holly's feeling the effects of CF, but she's achieved the dreams she once thought might be out of reach. She's married to a man whom she loves and who adores her. They have a precious 10-year-old daughter who is the light of both their lives. What was only a dream that I was afraid to hope for 33 years ago, has become reality, and I thank God for dreams that sometimes do come true.
Saturday, November 17, 2012
Listening
As adults, we like schedules. We get up at the same time every day, eat at the same time, go to work or school at the same time, and we expect our children to live on our schedules. And, to a certain extent, that's reasonable and necessary.
However, when it comes to talking and sharing about what's on their hearts and minds, kids, whether or not they have CF, work on their own timetables, and, frequently they don't jibe with ours. Just about the time we're settling down to crawl into bed, they decide to open up. Though it's tempting to put them off until toothpicks aren't a necessary accoutrement to keep our eyes open, with kids, we have to listen when they're ready to talk. If we don't seize those opportunities, we lose them. They cannot and will not be vulnerable on our timetables.
Holly and I had a lot of 2 a.m. chat sessions sitting on her bed, sometimes high in the air in her loft. These were rare and precious times when she granted me access into her very private world of hopes, dreams and fears. These were the times she voiced the concerns that I had no idea she carried.
When we're entrusted with the gift of our children's open hearts, we must tread carefully. We must take their thoughts, feelings and fears seriously. At times, that means we sit quietly as we let it all sink in and weigh our answers thoughtfully and carefully. It's critical that our children know, without a doubt, that they have been heard and are being taken seriously.
Sometimes the feelings and thoughts they express will surprise or shock or even hurt us. I remember biting the inside of my cheek to keep from bursting into tears when, as a young teenager, Holly shared that she thought she probably shouldn't consider becoming a mother when she grew up. A friend of ours had recently died, and his death affected her deeply. She also observed and felt keenly the pain his high school and college-age children experienced. Holly said that, knowing she might not live to share the experiences of graduation, marriage and the birth of her children's children, she didn't think it was fair to them to bring them into the world only to "abandon" them too soon. As I bit my cheek and blinked back tears, I prayed for wisdom of how to answer this honest, realistic question. Finally, I told her that I believed with every fiber of my being that she was such a precious gift to those she touched that any child would be privileged to call her mom for as long as they had her, and that she should not deprive them of that. I explained that whatever time she shared with them, she would leave her imprint on them, and they would be better for it. Thank God for His insight on that one.
As it has turned out, she is now 33 and has a 10-year-old daughter who adores her mama, and her mama adores her right back. How deprived they both would have been had she chosen not to have a child.
There were many other discussions. Some were not quite so heavy and future-focused. There were the typical teenage angst talks, as well as those that dealt primarily with CF.
The point is that, as parents, we must be prepared, and we must be focused on the needs of our children ahead of our own needs for sleep. Along my journey as a parent, I have been fortunate to learn from people wiser and more experienced than myself. They have passed on valuable tips on communication with children that are especially appropriate during those intense times of sharing. These tips help us let our children know they have our attention and are our priority at that moment. It's not just important that we give our attention, they must know and believe they have our attention. How do we prove that?
1. Look them in the eye, and when they look back, don't look away, especially when they are the ones doing the talking.
2. Don't interrupt! Hear them out, even if you disagree with what they're saying.
3. Don't discount their thoughts and feelings. They're real and important to them, no matter how they may seem to us.
4. Do ask questions to show your interest and to get clarification.
5. Do take time to consider what they've said to show that you value and give importance to the information.
6. If you don't have the answers, be brave and honest enough to tell them. Or say, "I need some time to think about that. I don't have an answer right now. I'll get back to you." Then do it. Do NOT let it drop. They'll respect your honesty whether you have an answer or not. Believe it or not, they figure out sooner than we think that we don't have all the answers. They just choose to love us anyway.
7. Tell the truth, even it it's tough to say and tough for them to hear. They'll spot a lie before it gets past your lips. Children are intuitive creatures. They know us much better than we realize, and they will catch us in a lie, even if we think it's for their benefit. Once we've lied, we've lost their trust and may never get it back. (That's a topic for another post.) Just tell them what they need to know, taking their age and level of understanding into consideration.
Give your child(ren) the time and attention they need, when they need it, you'll not regret it. You'll catch up on your sleep, but you can never get back the opportunity to connect with your children if you miss it.
However, when it comes to talking and sharing about what's on their hearts and minds, kids, whether or not they have CF, work on their own timetables, and, frequently they don't jibe with ours. Just about the time we're settling down to crawl into bed, they decide to open up. Though it's tempting to put them off until toothpicks aren't a necessary accoutrement to keep our eyes open, with kids, we have to listen when they're ready to talk. If we don't seize those opportunities, we lose them. They cannot and will not be vulnerable on our timetables.
Holly and I had a lot of 2 a.m. chat sessions sitting on her bed, sometimes high in the air in her loft. These were rare and precious times when she granted me access into her very private world of hopes, dreams and fears. These were the times she voiced the concerns that I had no idea she carried.
When we're entrusted with the gift of our children's open hearts, we must tread carefully. We must take their thoughts, feelings and fears seriously. At times, that means we sit quietly as we let it all sink in and weigh our answers thoughtfully and carefully. It's critical that our children know, without a doubt, that they have been heard and are being taken seriously.
Sometimes the feelings and thoughts they express will surprise or shock or even hurt us. I remember biting the inside of my cheek to keep from bursting into tears when, as a young teenager, Holly shared that she thought she probably shouldn't consider becoming a mother when she grew up. A friend of ours had recently died, and his death affected her deeply. She also observed and felt keenly the pain his high school and college-age children experienced. Holly said that, knowing she might not live to share the experiences of graduation, marriage and the birth of her children's children, she didn't think it was fair to them to bring them into the world only to "abandon" them too soon. As I bit my cheek and blinked back tears, I prayed for wisdom of how to answer this honest, realistic question. Finally, I told her that I believed with every fiber of my being that she was such a precious gift to those she touched that any child would be privileged to call her mom for as long as they had her, and that she should not deprive them of that. I explained that whatever time she shared with them, she would leave her imprint on them, and they would be better for it. Thank God for His insight on that one.
As it has turned out, she is now 33 and has a 10-year-old daughter who adores her mama, and her mama adores her right back. How deprived they both would have been had she chosen not to have a child.
There were many other discussions. Some were not quite so heavy and future-focused. There were the typical teenage angst talks, as well as those that dealt primarily with CF.
The point is that, as parents, we must be prepared, and we must be focused on the needs of our children ahead of our own needs for sleep. Along my journey as a parent, I have been fortunate to learn from people wiser and more experienced than myself. They have passed on valuable tips on communication with children that are especially appropriate during those intense times of sharing. These tips help us let our children know they have our attention and are our priority at that moment. It's not just important that we give our attention, they must know and believe they have our attention. How do we prove that?
1. Look them in the eye, and when they look back, don't look away, especially when they are the ones doing the talking.
2. Don't interrupt! Hear them out, even if you disagree with what they're saying.
3. Don't discount their thoughts and feelings. They're real and important to them, no matter how they may seem to us.
4. Do ask questions to show your interest and to get clarification.
5. Do take time to consider what they've said to show that you value and give importance to the information.
6. If you don't have the answers, be brave and honest enough to tell them. Or say, "I need some time to think about that. I don't have an answer right now. I'll get back to you." Then do it. Do NOT let it drop. They'll respect your honesty whether you have an answer or not. Believe it or not, they figure out sooner than we think that we don't have all the answers. They just choose to love us anyway.
7. Tell the truth, even it it's tough to say and tough for them to hear. They'll spot a lie before it gets past your lips. Children are intuitive creatures. They know us much better than we realize, and they will catch us in a lie, even if we think it's for their benefit. Once we've lied, we've lost their trust and may never get it back. (That's a topic for another post.) Just tell them what they need to know, taking their age and level of understanding into consideration.
Give your child(ren) the time and attention they need, when they need it, you'll not regret it. You'll catch up on your sleep, but you can never get back the opportunity to connect with your children if you miss it.
Monday, October 22, 2012
Making the Hospital Fun
Let's face it: hospitals are not fun. IVs, treatments, bad food, isolation, boredom . . . I could go on, but you know the drill. However, I always strove to give Holly something to look forward to, something that we only did in the hospital.
I knew one mom who bought a dollhouse for her daughter; you know, one of those big ones that you can decorate with wallpaper, fixtures and rugs, as well as the appropriate doll-sized furnishings. She reserved work on the dollhouse for hospital stays, which offered her daughter a fun experience every time she was hospitalized. Inspired by her, I wracked my brain for ideas and tried out different activities until I hit on something that worked for Holly.
My first attempt was to make a life-sized paper doll of Holly. I traced around her body and encouraged Holly to add the face and hair. Then we brainstormed about the proper clothing choices. After making a few outfits, we hung the Holly replica on the door for her to dress in different clothes every day. She thought it was fun at first, but she quickly lost interest in changing the outfits or doing anything with the paper doll.
Then, when I was shopping one day, I happened to see a pillowcase designed for autographs. It featured a funny picture of a cow on it that I knew would make Holly smile. The timing was perfect as Holly was scheduled to be admitted for sinus surgery.
The autograph pillow was a big hit. Holly loved it, and every time someone visited or a new doctor, nurse or RT came in the room, she insisted on a signature. I kept looking and was able to find similar pillowcases to have on hand for the next hospitalization until we, eventually, had exhausted the choices. Fortunately, that didn't seem to matter to Holly. A plain white pillowcase served just as well, and we kept up the tradition for years. As she grew older, she outgrew the practice, but she still has some of her collection of pillowcases stashed away for safekeeping.
The pillowcase tradition seemed a small thing to me, but it made Holly happy. She looked forward to that every time she went in the hospital. We had a hit on our hands.
Who knows what will make your child happy. Just brainstorm a bit and be willing to go with the flow and accept some trial and error, and you'll hit on an idea your child will love.
I knew one mom who bought a dollhouse for her daughter; you know, one of those big ones that you can decorate with wallpaper, fixtures and rugs, as well as the appropriate doll-sized furnishings. She reserved work on the dollhouse for hospital stays, which offered her daughter a fun experience every time she was hospitalized. Inspired by her, I wracked my brain for ideas and tried out different activities until I hit on something that worked for Holly.
My first attempt was to make a life-sized paper doll of Holly. I traced around her body and encouraged Holly to add the face and hair. Then we brainstormed about the proper clothing choices. After making a few outfits, we hung the Holly replica on the door for her to dress in different clothes every day. She thought it was fun at first, but she quickly lost interest in changing the outfits or doing anything with the paper doll.
Then, when I was shopping one day, I happened to see a pillowcase designed for autographs. It featured a funny picture of a cow on it that I knew would make Holly smile. The timing was perfect as Holly was scheduled to be admitted for sinus surgery.
The autograph pillow was a big hit. Holly loved it, and every time someone visited or a new doctor, nurse or RT came in the room, she insisted on a signature. I kept looking and was able to find similar pillowcases to have on hand for the next hospitalization until we, eventually, had exhausted the choices. Fortunately, that didn't seem to matter to Holly. A plain white pillowcase served just as well, and we kept up the tradition for years. As she grew older, she outgrew the practice, but she still has some of her collection of pillowcases stashed away for safekeeping.
The pillowcase tradition seemed a small thing to me, but it made Holly happy. She looked forward to that every time she went in the hospital. We had a hit on our hands.
Who knows what will make your child happy. Just brainstorm a bit and be willing to go with the flow and accept some trial and error, and you'll hit on an idea your child will love.
Saturday, September 22, 2012
It's Not Fair!
It's not fair. It's not fair that your child and mine were born with a chronic illness. It's not fair that, through no fault of their own, they have to deal with cystic fibrosis and all its attendant problems. It's not fair that so much of their days are consumed with simply staying alive. They didn't do anything to deserve this. They didn't put themselves at risk or make unwise decisions that would make CF a natural consequence of their behavior.
But then, life is not fair. That's an unfortunate fact we all must deal with at some point in our lives, at least if we're to avoid living out our days disappointed by our lack of constant bliss. Thankfully, we are not only plagued by disappointment but also surprised by joy. Life is a study in contrasts.
Our family is celebrating the news of a baby on the way. Vanessa, Brian, Brigid and Katrin expect to welcome a third baby in May. I am thrilled. Holly is thrilled.
At the same time, I wonder why one daughter enjoys the anticipation of new life while the other looks forward to more six more rounds of chemo in the hope of shrinking an inoperable brain tumor. This on top of her constant fight with CF. Vanessa requires more rest because of the tiny life growing inside her. Holly must rest, because the chemo drains her body of stamina and energy.
I am experiencing great joy for this new baby that is unmitigated by Holly's trials. Yet, I experience grief that Holly's life is, well, just plain hard. That's not to say it's devoid of happiness. She loves her husband and adores her daughter, dotes on her nieces and makes a point to find wonder in everyday life. If you read her Caring Bridge posts (www.caringbridge.com/visit/HollyLoughlin), you will see how she celebrates life every day in spite of everything.
Life isn't fair in other ways. For instance, Holly and Vanessa, precious human beings and gifts from God, were entrusted to me to nurture. Me! I don't deserve them. I couldn't possibly have done anything to make me worthy of them.
It isn't fair that I have a safe place to live with a roof over my head, a bed to sleep in, and heating and air conditioning. It isn't fair that, flawed as it may be, I live in a country where I can worship as I please. It isn't fair that I can leave the house safely and without worrying over the soldiers clustered on every street corner.
Life is not fair. My family is simply a microcosm that demonstrates the truth evident around the world and in every life. The contrast of the joy between Vanessa's life and the struggle in Holly's is just a slice of real life taken from a moment in time in our family. Joy and pain, simple and complicated, happiness and sorrow.
An amazing observation I've made in the midst of our personal circumstances is that Holly rejoices when Vanessa rejoices, and Vanessa weeps when Holly weeps, which is exactly as God intended. What a lesson for me to learn to rejoice and weep with those who are not part of my family but with whom I am connected, for as John Donne expressed, "No man is an island."
As far as our own daily lives and the difficulties we encounter that make us wince and squirm, what's important is what we make of it. We have a choice. As my pastor, Chuck Swindoll points out:
"The longer I live, the more I realize the impact of attitude on life.
Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.
The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot c
But then, life is not fair. That's an unfortunate fact we all must deal with at some point in our lives, at least if we're to avoid living out our days disappointed by our lack of constant bliss. Thankfully, we are not only plagued by disappointment but also surprised by joy. Life is a study in contrasts.
Our family is celebrating the news of a baby on the way. Vanessa, Brian, Brigid and Katrin expect to welcome a third baby in May. I am thrilled. Holly is thrilled.
At the same time, I wonder why one daughter enjoys the anticipation of new life while the other looks forward to more six more rounds of chemo in the hope of shrinking an inoperable brain tumor. This on top of her constant fight with CF. Vanessa requires more rest because of the tiny life growing inside her. Holly must rest, because the chemo drains her body of stamina and energy.
I am experiencing great joy for this new baby that is unmitigated by Holly's trials. Yet, I experience grief that Holly's life is, well, just plain hard. That's not to say it's devoid of happiness. She loves her husband and adores her daughter, dotes on her nieces and makes a point to find wonder in everyday life. If you read her Caring Bridge posts (www.caringbridge.com/visit/HollyLoughlin), you will see how she celebrates life every day in spite of everything.
Life isn't fair in other ways. For instance, Holly and Vanessa, precious human beings and gifts from God, were entrusted to me to nurture. Me! I don't deserve them. I couldn't possibly have done anything to make me worthy of them.
It isn't fair that I have a safe place to live with a roof over my head, a bed to sleep in, and heating and air conditioning. It isn't fair that, flawed as it may be, I live in a country where I can worship as I please. It isn't fair that I can leave the house safely and without worrying over the soldiers clustered on every street corner.
Life is not fair. My family is simply a microcosm that demonstrates the truth evident around the world and in every life. The contrast of the joy between Vanessa's life and the struggle in Holly's is just a slice of real life taken from a moment in time in our family. Joy and pain, simple and complicated, happiness and sorrow.
An amazing observation I've made in the midst of our personal circumstances is that Holly rejoices when Vanessa rejoices, and Vanessa weeps when Holly weeps, which is exactly as God intended. What a lesson for me to learn to rejoice and weep with those who are not part of my family but with whom I am connected, for as John Donne expressed, "No man is an island."
As far as our own daily lives and the difficulties we encounter that make us wince and squirm, what's important is what we make of it. We have a choice. As my pastor, Chuck Swindoll points out:
"The longer I live, the more I realize the impact of attitude on life.
Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.
The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot c
hange the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.
And so it is with you... we are in charge of our attitudes."
And so it is with you... we are in charge of our attitudes."
Friday, March 9, 2012
Pressure We Put on Our Kids
Recently I've begun to understand pressure that I've put on Holly without even realizing it. I think most of us moms are impressed with the courage with which our children face their many challenges. And, I don't know about anyone's kids but mine, but she rarely seems to complain.
Instead of encouraging her, my comments to her along those lines, as well as those of other people, have made her feel that that is what is expected of her. I think I've made her feel that I won't accept anything less than a brave face and an uncomplaining spirit. I've put unreasonable expectations on her, especially now that she's dealing with a second brain tumor in addition to CF.
Sometimes she hurts. Sometimes she's angry. Sometimes she's discouraged. Sometimes she's tired. Sometimes she needs a shoulder to cry on. Sometimes she needs to be left alone. And it's all OK.
I don't need her to be any different than what she is at any given time. I think it's imperative that we let our kids, even if they're adult kids, know that we're no less proud of them when they are in a bad mood than we are when they're in a good mood. They've been given major challenges that they deal with every day. Pills; treatments one, two, three, sometimes even four times a day. Their lives are scheduled around CF. It gets old even when life is "normal," and then come the lung infections, difficulties breathing, transplants, brain tumors.
When these unexpected situations hit, none of us knows what to think, how to feel, what to do. Yes, we absolutely need to be able to have our feelings about these situations and to express those feelings. But we also need to be aware that our children, small or grown, watch our reactions and take cues from us. If we fall apart, they know they have to be strong for us to keep us from getting even more upset. Or they learn hysterics are the right reaction. But if we're stoic and show no feelings, they think no feelings are allowed. And it doesn't help if, when they cry or get angry, we say, "Oh no, don't cry. It's going to be OK." Right then, it doesn't feel like it's going to be OK. We probably don't feel like everything's going to be OK. So why do we expect our kids to feel that? We say it because we are not comfortable with their pain, their fear or their anger. They're our children, after all. We love them more than life itself. We would gladly trade places with them. But our discomfort with their feelings tells them those feelings are not OK, so no matter how they feel, they pretend to be fine.
Sometime our kids need us to give them permission. As their parents, part of our job is to teach them what is and isn't appropriate. That includes teaching them to control their feelings. If they're angry with a friend, they can't just go punch the other kid. That makes dealing with feelings associated with CF particularly tricky. We need to give them permission to have their feelings even if they're so-called negative feelings. If it sounds confusing and a bit impossible, well that's because it is confusing and, though it's not impossible, it sure isn't easy! We have to demonstrate our own appropriate feelings to them, and we have to let them know their own feelings are OK. We need to tell them we understand their anger, and we share their sadness, disappointment and fear. Our feelings regarding our children and their health will always be complicated and must be handled with thoughtful sensitivity.
Instead of encouraging her, my comments to her along those lines, as well as those of other people, have made her feel that that is what is expected of her. I think I've made her feel that I won't accept anything less than a brave face and an uncomplaining spirit. I've put unreasonable expectations on her, especially now that she's dealing with a second brain tumor in addition to CF.
Sometimes she hurts. Sometimes she's angry. Sometimes she's discouraged. Sometimes she's tired. Sometimes she needs a shoulder to cry on. Sometimes she needs to be left alone. And it's all OK.
I don't need her to be any different than what she is at any given time. I think it's imperative that we let our kids, even if they're adult kids, know that we're no less proud of them when they are in a bad mood than we are when they're in a good mood. They've been given major challenges that they deal with every day. Pills; treatments one, two, three, sometimes even four times a day. Their lives are scheduled around CF. It gets old even when life is "normal," and then come the lung infections, difficulties breathing, transplants, brain tumors.
When these unexpected situations hit, none of us knows what to think, how to feel, what to do. Yes, we absolutely need to be able to have our feelings about these situations and to express those feelings. But we also need to be aware that our children, small or grown, watch our reactions and take cues from us. If we fall apart, they know they have to be strong for us to keep us from getting even more upset. Or they learn hysterics are the right reaction. But if we're stoic and show no feelings, they think no feelings are allowed. And it doesn't help if, when they cry or get angry, we say, "Oh no, don't cry. It's going to be OK." Right then, it doesn't feel like it's going to be OK. We probably don't feel like everything's going to be OK. So why do we expect our kids to feel that? We say it because we are not comfortable with their pain, their fear or their anger. They're our children, after all. We love them more than life itself. We would gladly trade places with them. But our discomfort with their feelings tells them those feelings are not OK, so no matter how they feel, they pretend to be fine.
Sometime our kids need us to give them permission. As their parents, part of our job is to teach them what is and isn't appropriate. That includes teaching them to control their feelings. If they're angry with a friend, they can't just go punch the other kid. That makes dealing with feelings associated with CF particularly tricky. We need to give them permission to have their feelings even if they're so-called negative feelings. If it sounds confusing and a bit impossible, well that's because it is confusing and, though it's not impossible, it sure isn't easy! We have to demonstrate our own appropriate feelings to them, and we have to let them know their own feelings are OK. We need to tell them we understand their anger, and we share their sadness, disappointment and fear. Our feelings regarding our children and their health will always be complicated and must be handled with thoughtful sensitivity.
Wednesday, February 29, 2012
Anger at God
When Holly was diagnosed at 7 months, I was first overcome with deep sadness. This beautiful baby for whom I had so many hopes for the future, the child I longed to get to know was threatened by an ugly disease. Would she be a girly girl who loved bows in her hair or would she be a tomboy with perpetually skinned knees? Would she be musical, like me? Or would she be an organizational whiz like her dad? Certainly she would be beautiful; we could already see that. We were hoping she would grow into a compassionate and caring woman. Now I was wondering if she would live long enough for us to learn any of those things.
As I was grieving the potential loss and the certain hardships in her future, anger began to bubble up. It roiled and boiled in my stomach and forced its way upward, closing my throat until it ached, moving through my tear ducts forcing hot, salty tears to make my face wet and my nose run. Then it flew out my arm as I pounded the steering wheel. It screamed out my mouth, and I yelled, "NO! IT'S NOT FAIR!" I screamed at God and told Him, "You want to teach me something, you teach ME, NOT MY CHILD!" I was furious, so I raged on, as Shakespeare said, troubling "deaf heaven with my bootless cries." At least that's how it felt. Small and helpless as I was, I was shaking my fist at the God of the universe, and He wasn't answering.
He eventually did answer, though not from a booming voice from heaven or a bolt of lightning to strike me down for my daring insubordination, but by reminding me of things I'd read in the Bible. He reminded me of His special love for little ones and for ones who are frail. What God wanted from me was trust. Would I trust Him to take care of Holly in His own way even if it were painful for me? I wanted answers that I didn't get. I wanted to know that she would live a long life. I wanted assurance that she would be happy. I wanted God to take it back. Take the CF away. I wanted some doctor who would redo the sweat test and find the first had been wrong. I wanted to know she would be OK. After all, she was my baby. She held my heart. I knew that anything that hurt her would probably hurt me more. Certainly what happened to her would hurt more than anything that could happen to me. Since God didn't give me any of those answers, I needed to listen to the answers He was giving me to know how to deal with the future.
And then I knew. It was as if God had whispered to my mind. "Love her. Just love her. Love her more than you love yourself. Let me do what is best in her life, even if it means watching her hurt, even if it one day means watching her die." It's hard to imagine how or why a good God would let those things happen. But we live in a world that is not the way God created it. We are not the perfect beings God created us to be. Disease and pain entered the world when Adam and Eve took a bite of that fruit. In spite of that, God can make good happen out of awful, seemingly senseless situations. I don't know how He does that, but I've seen it happen.
I've learned a lot since that day 32 years ago. I've learned that it's OK to be angry with God. He's a big God. He has big shoulders, and He can handle my anger (and yours). I've learned that He faithfully hangs on to me and keeps me going when I see Holly hurting, and she's hurt a lot in her life.
Too much for her 32 years. Her first hospitalization came when she was seven and then yearly for the next few years. When she became a teenager, severe sinus disease and persistent polyps brought on more than 20 surgeries. In one when she was 17, the surgeon opened her up ear to ear across the top of her head. She shaved her head in preparation, and we learned that she looked pretty darn cute with no hair! That surgery brought on two very serious blood infections that nearly took her life. then in her 20s her life was pretty routine for a while, with hospitalizations here and there. It even got better for a while after her daughter was born.
Then 3 1/2 years ago she was diagnosed with a brain tumor. It had to be removed immediately. A long difficult recovery followed, along with six weeks of radiation that took her hair and her energy. Recently, still not completely recovered from that ordeal, she got the news of another brain tumor. This one inoperable.
In the midst of all the hospitalizations and illness, I watched God work good in her life as He brought her a loving husband who understood that she was worth dealing with all the crap of CF. God gave her a precious daughter who brings untold joy to all of us. I have watched Holly reach out to others who are hurting with boundless compassion, because she knows what it's like to hurt. She has become an amazing person, whom God uses to bring joy into the lives of people she doesn't even know. She is indeed the product of God's grace.
I still get angry at God sometimes, like when Holly told me about this new brain tumor. Now, however, I move quickly into gratitude for His immense goodness. After all, He gave me Holly. What could be better than that? Still, four years later, he gave me another beautiful daughter, Vanessa. More proof of His love. When I was first told that Holly had CF, the doctor (woefully out of date) said she probably wouldn't live to school age. Then I learned that age 18 was 50/50. And just before Mother's Day we'll celebrate her 33rd birthday. If I had no other proof of God's love and goodness than that, it would be enough.
As I was grieving the potential loss and the certain hardships in her future, anger began to bubble up. It roiled and boiled in my stomach and forced its way upward, closing my throat until it ached, moving through my tear ducts forcing hot, salty tears to make my face wet and my nose run. Then it flew out my arm as I pounded the steering wheel. It screamed out my mouth, and I yelled, "NO! IT'S NOT FAIR!" I screamed at God and told Him, "You want to teach me something, you teach ME, NOT MY CHILD!" I was furious, so I raged on, as Shakespeare said, troubling "deaf heaven with my bootless cries." At least that's how it felt. Small and helpless as I was, I was shaking my fist at the God of the universe, and He wasn't answering.
He eventually did answer, though not from a booming voice from heaven or a bolt of lightning to strike me down for my daring insubordination, but by reminding me of things I'd read in the Bible. He reminded me of His special love for little ones and for ones who are frail. What God wanted from me was trust. Would I trust Him to take care of Holly in His own way even if it were painful for me? I wanted answers that I didn't get. I wanted to know that she would live a long life. I wanted assurance that she would be happy. I wanted God to take it back. Take the CF away. I wanted some doctor who would redo the sweat test and find the first had been wrong. I wanted to know she would be OK. After all, she was my baby. She held my heart. I knew that anything that hurt her would probably hurt me more. Certainly what happened to her would hurt more than anything that could happen to me. Since God didn't give me any of those answers, I needed to listen to the answers He was giving me to know how to deal with the future.
And then I knew. It was as if God had whispered to my mind. "Love her. Just love her. Love her more than you love yourself. Let me do what is best in her life, even if it means watching her hurt, even if it one day means watching her die." It's hard to imagine how or why a good God would let those things happen. But we live in a world that is not the way God created it. We are not the perfect beings God created us to be. Disease and pain entered the world when Adam and Eve took a bite of that fruit. In spite of that, God can make good happen out of awful, seemingly senseless situations. I don't know how He does that, but I've seen it happen.
I've learned a lot since that day 32 years ago. I've learned that it's OK to be angry with God. He's a big God. He has big shoulders, and He can handle my anger (and yours). I've learned that He faithfully hangs on to me and keeps me going when I see Holly hurting, and she's hurt a lot in her life.
Too much for her 32 years. Her first hospitalization came when she was seven and then yearly for the next few years. When she became a teenager, severe sinus disease and persistent polyps brought on more than 20 surgeries. In one when she was 17, the surgeon opened her up ear to ear across the top of her head. She shaved her head in preparation, and we learned that she looked pretty darn cute with no hair! That surgery brought on two very serious blood infections that nearly took her life. then in her 20s her life was pretty routine for a while, with hospitalizations here and there. It even got better for a while after her daughter was born.
Then 3 1/2 years ago she was diagnosed with a brain tumor. It had to be removed immediately. A long difficult recovery followed, along with six weeks of radiation that took her hair and her energy. Recently, still not completely recovered from that ordeal, she got the news of another brain tumor. This one inoperable.
In the midst of all the hospitalizations and illness, I watched God work good in her life as He brought her a loving husband who understood that she was worth dealing with all the crap of CF. God gave her a precious daughter who brings untold joy to all of us. I have watched Holly reach out to others who are hurting with boundless compassion, because she knows what it's like to hurt. She has become an amazing person, whom God uses to bring joy into the lives of people she doesn't even know. She is indeed the product of God's grace.
I still get angry at God sometimes, like when Holly told me about this new brain tumor. Now, however, I move quickly into gratitude for His immense goodness. After all, He gave me Holly. What could be better than that? Still, four years later, he gave me another beautiful daughter, Vanessa. More proof of His love. When I was first told that Holly had CF, the doctor (woefully out of date) said she probably wouldn't live to school age. Then I learned that age 18 was 50/50. And just before Mother's Day we'll celebrate her 33rd birthday. If I had no other proof of God's love and goodness than that, it would be enough.
Tuesday, January 3, 2012
The Role of Exercise
I haven't yet talked about the importance of exercise in the treatment of CF, and that is a serious lapse on my part. Exercise has been a part of Holly's regimen since she was old enough to run and jump. Before she was two, doctors told us that jumping on the trampoline was beneficial to kids with CF, because it helped shake the mucous free from the lungs to make it easier to cough out. As much as anything, I think it was the exercise and taking deep breaths that helped. We were very careful with the trampoline, and no one was hurt on or around it. However, I know that American Academy of Pediatrics recommends that parents keep children away from trampolines. That still leaves a host of other activities that kids love and that get them breathing hard and coughing. When Holly was really small, we would sometimes have short little races with her, pushing her to run as fast as she could, then encouraging her to cough. Then we'd sprint again, over and over until we saw she was wearing out or tiring of our game. Other times, she we'd get her on her big wheel, and when she was older she really enjoyed riding her bike.
After living in Dallas when she was diagnosed, then being transferred first to St. Louis then New Jersey, we moved back to Texas. Knowing the heat would be hard on her, we bought a smaller, older house in order to be able to afford a pool. As soon as I could, I taught both girls to swim. In the summer they spent most of their days in the pool with each other and/or friends. I have great memories of watching them and listening to them laugh as they swam and played in the water. Frequently, they'd swim most of the morning then eat lunch on the trampoline before getting back in the water. When she hit the pre-adolescent years, we got her involved in swimming. She first swam on the city team, and when she hit high school, she swam on that team. Sometimes, she swam so hard that she couldn't get out of the pool and had to be pulled out by team members, but it did the job and helped keep her lungs clean!
Holly had a somewhat unusual school path and left high school after her sophomore year. (More about that in another post.) That ended her competitive swimming for a couple of years until she left home for the University of North Texas. At that time, knowing that there was no one around to do chest physiotherapy (CPT), she started swimming again to help fill in the gap.
It helps to just think creatively. Put on your "thinking cap" to come up with ideas to spur your kiddo to exercise more. Dance, even in your living room, requires good deep breathing. I'm talking bouncing around, active dancing. The kind that kids really like. Basketball, soccer, even just "chase" will do it. Those kids of things also encourage your child to be outside rather than inside parked in front of the brain-draining television.
For more encouragement, check out Jerry Cahill's You Cannot Fail through the Boomer Eaiason Foundation's website. Jerry (who is 55!) was a pole-vaulter for a long time and now coaches it. He still finds ways to keep exercising even when he has to carry his oxygen with him. He is a real inspiration!
Let me know what you use with your kiddos to help keep them breathing deeply and coughing. This is a great place to share!
After living in Dallas when she was diagnosed, then being transferred first to St. Louis then New Jersey, we moved back to Texas. Knowing the heat would be hard on her, we bought a smaller, older house in order to be able to afford a pool. As soon as I could, I taught both girls to swim. In the summer they spent most of their days in the pool with each other and/or friends. I have great memories of watching them and listening to them laugh as they swam and played in the water. Frequently, they'd swim most of the morning then eat lunch on the trampoline before getting back in the water. When she hit the pre-adolescent years, we got her involved in swimming. She first swam on the city team, and when she hit high school, she swam on that team. Sometimes, she swam so hard that she couldn't get out of the pool and had to be pulled out by team members, but it did the job and helped keep her lungs clean!
Holly had a somewhat unusual school path and left high school after her sophomore year. (More about that in another post.) That ended her competitive swimming for a couple of years until she left home for the University of North Texas. At that time, knowing that there was no one around to do chest physiotherapy (CPT), she started swimming again to help fill in the gap.
It helps to just think creatively. Put on your "thinking cap" to come up with ideas to spur your kiddo to exercise more. Dance, even in your living room, requires good deep breathing. I'm talking bouncing around, active dancing. The kind that kids really like. Basketball, soccer, even just "chase" will do it. Those kids of things also encourage your child to be outside rather than inside parked in front of the brain-draining television.
For more encouragement, check out Jerry Cahill's You Cannot Fail through the Boomer Eaiason Foundation's website. Jerry (who is 55!) was a pole-vaulter for a long time and now coaches it. He still finds ways to keep exercising even when he has to carry his oxygen with him. He is a real inspiration!
Let me know what you use with your kiddos to help keep them breathing deeply and coughing. This is a great place to share!
Monday, January 2, 2012
2012
Today is January 2, 2012. I hope for all of you that this is a an exceptional year of growth and health for you and yours!
There's a great website I suggest you visit: http://esiason.org/thriving-with-cf/you-cannot-fail.php featuring Jerry Cahill and the Boomer Esaison Foundation. Jerry has recently launched his I Cannot Fail effort to encourage those with CF and others to be the best they can possibly be. Be the hero of your own story is one of my favorite of Jerry's sayings. You can read about him and buy his book, a T-shirt and/or wrist band at this site. I strongly encourage you to do so.
Through Jerry I also learned of Moganko for CF . It's a great blog by another man with CF. He is using his "friend," a puppet/muppet named Monganko, to spread the word about CF and encourage those who have it to take care of themselves. He's starting a campaign to get the Muppets to join him to raise awareness about CF. You can join his efforts at the site.
We have more people than ever before promoting health for our sons and daughters no matter their age. I am grateful to them and to those who raise money for a cure. We need them all. Thank you Jerry, Josh and the CF Foundation for all your efforts!
Caren
There's a great website I suggest you visit: http://esiason.org/thriving-with-cf/you-cannot-fail.php featuring Jerry Cahill and the Boomer Esaison Foundation. Jerry has recently launched his I Cannot Fail effort to encourage those with CF and others to be the best they can possibly be. Be the hero of your own story is one of my favorite of Jerry's sayings. You can read about him and buy his book, a T-shirt and/or wrist band at this site. I strongly encourage you to do so.
Through Jerry I also learned of Moganko for CF . It's a great blog by another man with CF. He is using his "friend," a puppet/muppet named Monganko, to spread the word about CF and encourage those who have it to take care of themselves. He's starting a campaign to get the Muppets to join him to raise awareness about CF. You can join his efforts at the site.
We have more people than ever before promoting health for our sons and daughters no matter their age. I am grateful to them and to those who raise money for a cure. We need them all. Thank you Jerry, Josh and the CF Foundation for all your efforts!
Caren
Subscribe to:
Posts (Atom)