On October 10th, we learned we are expecting our third child. We were elated beyond words. We had been planning this for a long time and had been trying for several months, asking the Lord in our prayers to bless us with another child if it was His will. And He definitely showed his sense of humor because I am due on my birthday.
Now, if we were any "normal" family with completely "normal" kids, most people would just be happy with us and not think much about it. Those who have known us for years know that we have always wanted three or four children from the start, before we knew that Cystic Fibrosis would become the center of our lives. But there are those people out there, whether they are willing to admit it or not, who think we are completely stupid, negligent, moronic, naive, irresponsible...you pick the adjective, and I'm sure people have thought it. Does it MATTER what others think about what I do, whether it's wearing a certain pair of shoes with a certain shirt or choosing to have another child? Well, no. I know that. But I need to set some things straight for my own peace of mind.
First of all, NO ONE is guaranteed a healthy child, no matter how healthy you are or seem and no matter how "by the book" you do things before, during, and after pregnancy. Most mothers-to-be have an image in their minds of their perfect baby and don't give much thought to the possibility that their child will be anything but. Take for example an article I read recently about a young mother who was preparing to deliver her second daughter, who had planned every miniscule detail down for her baby's birth and had these picture-perfect images of her two daughters growing up together and doing all the sisterly things you would imagine. Her labor went beautifully, and she delivered a gorgeous baby girl--who had Down Syndrome. Or we can get closer to home and talk about my sister, who had her first baby, a daughter, in 2004, who was later found to be profoundly deaf in one ear and moderately deaf in the other. I know several other women who have lost babies, either before or after birth, for various reasons, but I won't be mentioning names or specifics because I haven't asked for their permission. But the point of mentioning any of this is, despite having unhealthy children, it doesn't mean they don't want more children later on or that their decision to have more will be dictated by those circumstances.
Yes, my situation is a bit different. What my children have is genetic and life-threatening. Every child we have has a 25% chance of having CF and a 50% chance of being a carrier of the gene (just like me and Matt, which is nothing to worry about unless two carriers have children together, obviously), but essentially, every child has a 75% chance of being fine, which makes the "odds" in our favor. But I know without a doubt that God chose us, for whatever reason, to be the parents of these children. He knew, even if we didn't and still don't understand it, that we are strong enough to be able to perservere through the struggles that come with being CF parents (just like so many other parents of children with chronic conditions). I also know He wants to give us the gift of more children, otherwise He wouldn't have and I would not be carrying this precious life inside me right now. So I dare anyone to question God about his will and ways because you won't win the argument.
Am I worried my third child with have CF? Honestly, even though the thought is always in the back of my mind, it hasn't scared me yet, and I don't know that it will. I am learning that "worry is futile and faith is fruitful" and that worrying will get me nowhere and only make me miserable. My faith in God's plan for us and this baby is not an "I believe everything will be hunky dorey" faith, it's an "I believe God will give us only what we can handle" faith. So if that means we are given another child with CF to love and raise, then that's what we are going to do, and we are going to be thankful for the gift of getting to be parents to another amazing gift, and as my pastor reminded us, "the chance to raise another saint." Ephesians 5:20 says, "Always give thanks to God the Father for everything..." So even if we don't always have the picture-perfect life, or 100% healthy kids, we are thankful for all we do have and will continue to be thankful no matter what circumstances in which we find ourselves.
The bottom line is don't judge what you don't understand. If you have been blessed with healthy children and a relatively "normal" life, remember to praise our Lord and give thanks and not to take it for granted because you never know when life can take an abrupt turn. And please don't claim you know how it is to wear these shoes of mine until you've walked in them or what you would do in my situation.
And look at it this way: If we had chosen to not have any children after Emberlynn based on the CF circumstances, we wouldn't have our wonderful, loving, fun, precious son Cohen, who brings so much joy to my life that my world would be absolutely broken without him. And we wouldn't have this new little baby on the way, who we already love and adore even at the size of just a jelly bean.
Friday, November 19, 2010
Thursday, November 18, 2010
Scans, Shots, and Silly Kids
Today we trekked to Vanderbilt for the last CF Clinic visit of the year (and hopefully the last Vanderbilt visit of the year period, in hopes that Emberlynn and Cohen don't pick up any illnesses that warrant hospital stays).
My mom went with us at my request because Emberlynn was scheduled to receive the first of what I hope is very few CT scans (read my last CF Clinic post for details on my initial feelings about the CT), and I knew I would be unable to be in the room with her due to being pregnant, so I asked Mom to stand with her because I didn't want her to be scared all by herself. Cohen and I weren't even allowed to go down the hall with them, which I understood but was still a bit disappointed about since I am always worried about the kids when they have to undergo new procedures. In the meantime, Cohen and I watched the trains in the lobby and went outside to see the koi fish in the pond. The CT scan was not supposed to take very long, but I was still surprised when Mom and Emberlynn were in and out within five minutes. Mom said she did awesome; she did everything she was told and had no issues. Emberlynn told me, "He took my picture!"
Afterward, we headed upstairs for CF Clinic. The kids were weighed and measured as usual (Emberlynn gained a little over a pound and Cohen stayed the same, none of which is worrisome, as they are still in the "green" zone for BMI). Later in our visit, the doctor went over the CT scan results (and we were able to see the images on the computer screen) and explained everything very well to us. He didn't give us the "final" say on the lung findings (a radiologist will look over it to look for anything that might be serious), but he said from what he could see, they looked "normal" for a kid with CF (all CFers lungs look abnormal in some shape or form, we were told). He did notice some mucus "build-up" in the bronchial areas, which is normal but can cause problems if it stays there and builds and builds. He asked what her normal chest clearance routine is like, and I told him Vest twice a day and Pulmozyme (an inhaled medication) once a day, and he said that we just needed to continue it and not slack off (not something he needs to worry about).
We didn't have to see the nutritionist today, which is nice (not that we don't like her, it's just one less person we have to worry about seeing that ends up taking up more time on an already long day with two kids who get bored pretty easily in a room that has no forms of entertainment). An RT (respiratory therapist) came in to measure Cohen because he is old enough for a Vest, but alas, his chest is still too small by 1/2 inch (it's just as well, though, because the Vest terrifies him); therefore, we will continue with manual CPT until he gets big enough for the Vest (they will measure him again at their next clinic visit in February).
Emberlynn was due for her annual labs. In the past, this is something we have had to go to the next floor to have done, but now they have someone come to the exam room to draw blood, so we didn't have to go anywhere, which was nice. Emberlynn still cried a little despite have the EMLA cream to numb her arm (probably because she saw a needle going into her arm, which is scary for most kids anyway). Neither of the kids likes to see the other upset, so it was no surprise when Cohen ran to me and expressed his concern for his sister: "Emberlynn is crying! Her arm is hurt!"
Finally, both kids needed their flu shots. Shots are always something I forewarn them about. I let them know that they will be getting one (or several) and that it hurts for a minute but then it will feel better. Both always seem fine with this until it's time for the actual shot. But they were troopers as usual. As the nurse who took care of them through their entire appointment was preparing Cohen's flu shot, she told me that my kids are very well-behaved and that she was impressed by their cooperation with everything. It's always nice to receive compliments, especially in the midst of a day that is never looked forward to, and I thanked her.
And since part of the title of this post is "silly kids", I will say in closing that, due to a long day resulting in no naps, my kids got the giggles this afternoon, making them even sillier than they already normally are. I love my kiddos, but this Mommy is most definitely looking forward to their bedtime tonight and a lazy day at home tomorrow.
My mom went with us at my request because Emberlynn was scheduled to receive the first of what I hope is very few CT scans (read my last CF Clinic post for details on my initial feelings about the CT), and I knew I would be unable to be in the room with her due to being pregnant, so I asked Mom to stand with her because I didn't want her to be scared all by herself. Cohen and I weren't even allowed to go down the hall with them, which I understood but was still a bit disappointed about since I am always worried about the kids when they have to undergo new procedures. In the meantime, Cohen and I watched the trains in the lobby and went outside to see the koi fish in the pond. The CT scan was not supposed to take very long, but I was still surprised when Mom and Emberlynn were in and out within five minutes. Mom said she did awesome; she did everything she was told and had no issues. Emberlynn told me, "He took my picture!"
Afterward, we headed upstairs for CF Clinic. The kids were weighed and measured as usual (Emberlynn gained a little over a pound and Cohen stayed the same, none of which is worrisome, as they are still in the "green" zone for BMI). Later in our visit, the doctor went over the CT scan results (and we were able to see the images on the computer screen) and explained everything very well to us. He didn't give us the "final" say on the lung findings (a radiologist will look over it to look for anything that might be serious), but he said from what he could see, they looked "normal" for a kid with CF (all CFers lungs look abnormal in some shape or form, we were told). He did notice some mucus "build-up" in the bronchial areas, which is normal but can cause problems if it stays there and builds and builds. He asked what her normal chest clearance routine is like, and I told him Vest twice a day and Pulmozyme (an inhaled medication) once a day, and he said that we just needed to continue it and not slack off (not something he needs to worry about).
We didn't have to see the nutritionist today, which is nice (not that we don't like her, it's just one less person we have to worry about seeing that ends up taking up more time on an already long day with two kids who get bored pretty easily in a room that has no forms of entertainment). An RT (respiratory therapist) came in to measure Cohen because he is old enough for a Vest, but alas, his chest is still too small by 1/2 inch (it's just as well, though, because the Vest terrifies him); therefore, we will continue with manual CPT until he gets big enough for the Vest (they will measure him again at their next clinic visit in February).
Emberlynn was due for her annual labs. In the past, this is something we have had to go to the next floor to have done, but now they have someone come to the exam room to draw blood, so we didn't have to go anywhere, which was nice. Emberlynn still cried a little despite have the EMLA cream to numb her arm (probably because she saw a needle going into her arm, which is scary for most kids anyway). Neither of the kids likes to see the other upset, so it was no surprise when Cohen ran to me and expressed his concern for his sister: "Emberlynn is crying! Her arm is hurt!"
Finally, both kids needed their flu shots. Shots are always something I forewarn them about. I let them know that they will be getting one (or several) and that it hurts for a minute but then it will feel better. Both always seem fine with this until it's time for the actual shot. But they were troopers as usual. As the nurse who took care of them through their entire appointment was preparing Cohen's flu shot, she told me that my kids are very well-behaved and that she was impressed by their cooperation with everything. It's always nice to receive compliments, especially in the midst of a day that is never looked forward to, and I thanked her.
And since part of the title of this post is "silly kids", I will say in closing that, due to a long day resulting in no naps, my kids got the giggles this afternoon, making them even sillier than they already normally are. I love my kiddos, but this Mommy is most definitely looking forward to their bedtime tonight and a lazy day at home tomorrow.
Friday, August 13, 2010
Preschool, Potties, and Big Boy Beds
It blows my mind that Emberlynn is now four and a half and Cohen is nearly three. I'm sure most parents get hit with the realization over and over again just how fast their kids are getting bigger, especially when you think back to their infancy. I look at old pictures of my blue-eyed girl and sweet little man, which are wide-spread through the house, and am reminded constantly just how big they are getting and how fleeting moments are.
Emberlynn returned to preschool last week. She goes on Tuesdays and Thursdays for half a day, and even though we are planning for me to homeschool next year when she begins kindergarten, I am glad we made the decision for her to attend preschool. The biggest benefit for her has been developing much-needed social skills. A year ago, she would barely talk to anyone she didn't know, if at all, and now she is much more open to meeting new people and having actual conversations (well, as much that is expected from a four-year-old, anyway). I was very shy as a child and still am to a degree, so I feel like she gets a lot of that from me, but I am glad we were able to help her come out of her shell a bit.
We decided we wanted to potty-train Cohen over the summer since he turned two and a half. I was worried it would be more difficult than training Emberlynn only because I have heard from so many parents that potty-training boys is more difficult than potty-training girls. Personally, after having potty-trained one of each, I have to say that I don't think one is easier than another; rather, like most things in life, I think it just depends on the child. As a parent, I think at some point you realize that you have to go with whatever works for you and for your child, not everyone else's. In my case, my boy was easier to train than my girl. Potty-training just clicked for Cohen. He's been in underwear for several weeks now and hasn't looked back.
Cohen has also reached another milestone: graduating to a twin bed. Yes, he still slept in his crib. Our pediatrician said as long as he was younger than three (he is) and hadn't climbed out of it yet (he hadn't) that it was perfectly fine for him to stay in it until he or we were ready to move to a regular bed. Being the worrier I am, I was afraid the transition would be difficult. I knew Cohen would be excited about having his "big boy bed," but sleeping in it was a completely different story. On the first day, we put him in it for his nap, and he did great. I was still worried how night time would go, but he went right down. He hasn't missed his crib yet.
Cohen meeting these two major milestones in his little life has been bittersweet for me. I realize he's getting older, but I feel like he's still my little baby who should still be in diapers and sleeping in a crib. I am very proud of him for being such a big boy, but my heart aches slightly for those baby days when he depended on me entirely.
As for my Emmylou, she is a wonderful big sister and loves to help me around the house and with her little brother. Both my kids are such amazing gifts, and I couldn't ask for more loving, sweet, helpful, awesome children.
Emberlynn returned to preschool last week. She goes on Tuesdays and Thursdays for half a day, and even though we are planning for me to homeschool next year when she begins kindergarten, I am glad we made the decision for her to attend preschool. The biggest benefit for her has been developing much-needed social skills. A year ago, she would barely talk to anyone she didn't know, if at all, and now she is much more open to meeting new people and having actual conversations (well, as much that is expected from a four-year-old, anyway). I was very shy as a child and still am to a degree, so I feel like she gets a lot of that from me, but I am glad we were able to help her come out of her shell a bit.
We decided we wanted to potty-train Cohen over the summer since he turned two and a half. I was worried it would be more difficult than training Emberlynn only because I have heard from so many parents that potty-training boys is more difficult than potty-training girls. Personally, after having potty-trained one of each, I have to say that I don't think one is easier than another; rather, like most things in life, I think it just depends on the child. As a parent, I think at some point you realize that you have to go with whatever works for you and for your child, not everyone else's. In my case, my boy was easier to train than my girl. Potty-training just clicked for Cohen. He's been in underwear for several weeks now and hasn't looked back.
Cohen has also reached another milestone: graduating to a twin bed. Yes, he still slept in his crib. Our pediatrician said as long as he was younger than three (he is) and hadn't climbed out of it yet (he hadn't) that it was perfectly fine for him to stay in it until he or we were ready to move to a regular bed. Being the worrier I am, I was afraid the transition would be difficult. I knew Cohen would be excited about having his "big boy bed," but sleeping in it was a completely different story. On the first day, we put him in it for his nap, and he did great. I was still worried how night time would go, but he went right down. He hasn't missed his crib yet.
Cohen meeting these two major milestones in his little life has been bittersweet for me. I realize he's getting older, but I feel like he's still my little baby who should still be in diapers and sleeping in a crib. I am very proud of him for being such a big boy, but my heart aches slightly for those baby days when he depended on me entirely.
As for my Emmylou, she is a wonderful big sister and loves to help me around the house and with her little brother. Both my kids are such amazing gifts, and I couldn't ask for more loving, sweet, helpful, awesome children.
Thursday, August 12, 2010
Today CF Stands for "Cute Fatties"
Fellow CF parents whose kids have struggled with weight gain can relate to my excitement when I share the news that my kids have gained a pretty substantial amount of weight since their last clinic visit in May. Cohen has gained over 2 pounds and is now 30.3 pounds; fortunately, he has not really struggled with his weight since he started taking enzymes at 7 weeks old, but weight gain is always exciting nonetheless when it comes to CF. Emberlynn, who struggled with weight gain even after diagnosis and enzyme treatment and ended up having a g-tube placed when she was 18 months old to help with her growth, made my jaw drop today; she has gained over 4 pounds and is a whopping 38.5 pounds! I knew those 4T shorts were getting tight in that waist, but I never would have guessed she'd gain that much! I was ecstatic. My sister, who went with us this time (who I am extremely grateful to, seeing as she had to take Cohen potty 4 times while I spoke with the medical team) and I called them the little fatties.
Isn't it ironic how in today's society, what with its obese kids and health crises, I am rejoicing for my kids' weight gain? Isn't it also ironic that this chubby mommy, who so desperately is trying to shed the pounds, is also desperate for her children to do just the opposite?
So, to get back to the clinic visit update, there were a few changes made to the kids' existing treatment routines. Emberlynn will actually get to decrease her tube feedings (yay for breaks, not just for Emmylou but for Mommy and Daddy, too!). Presently, she is on her feeding tube every night, but we get to knock it down to 5 nights a week. Can we say weekend trips with no tube junk to haul with us? Hallelujah for that! Her enzyme dosage is going to increase to keep up with her increase in weight, so we are bumping it from 3 caps to 4 at meals and before and after tube feeds.
I was also told that, per CF protocol, Emberlynn has to have a CT scan on her lungs soon. It will give the doctors a better look at her lungs and allow them to see how they are looking, in a nut shell. I was also forewarned that her lungs will look abnormal no matter what because of the CF and to be prepared for that. Coincidentally, I just read an article last week about CT scans and how the high radiation exposure from them can cause cancer later in life. I brought this concern to the doctor's attention, and we discussed it further. I agreed to schedule the scan, but only after telling her that I'd need to discuss it with Matt and also further research the risks. It's ultimately our call, of course, whether we want to risk it. It's a hard decision to make, and it will take a lot of weighing the pros vs. cons and risks vs. advantages. If we decide against it, we can cancel the appointment.
As for Cohen, he is going to be starting Pulmozyme, which is an inhaled medication with which we are quite familiar (Emberlynn has been on it since she was 22 months old). He will take it as a breathing treatment once a day. I'm a little worried that he will be upset by it for a while; after all, he's only two, and he's never been forced to leave something on his face with vapors going in his nose and mouth. It'd freak me out, too. We discussed switching from manual CPT to the Vest, but I told the doctor that we wanted to wait a little while longer because we did a "test run" recently with Cohen and the Vest, and he was, to put it mildly, less than thrilled. Emberlynn thought it was funny her first time on the Vest, but Cohen was completely terrified.
All in all, the kids' clinic visit had a positive outcome, despite the obvious reasons for clinic visits in the first place. They are both doing very well, and I can't ask for more than that.
Isn't it ironic how in today's society, what with its obese kids and health crises, I am rejoicing for my kids' weight gain? Isn't it also ironic that this chubby mommy, who so desperately is trying to shed the pounds, is also desperate for her children to do just the opposite?
So, to get back to the clinic visit update, there were a few changes made to the kids' existing treatment routines. Emberlynn will actually get to decrease her tube feedings (yay for breaks, not just for Emmylou but for Mommy and Daddy, too!). Presently, she is on her feeding tube every night, but we get to knock it down to 5 nights a week. Can we say weekend trips with no tube junk to haul with us? Hallelujah for that! Her enzyme dosage is going to increase to keep up with her increase in weight, so we are bumping it from 3 caps to 4 at meals and before and after tube feeds.
I was also told that, per CF protocol, Emberlynn has to have a CT scan on her lungs soon. It will give the doctors a better look at her lungs and allow them to see how they are looking, in a nut shell. I was also forewarned that her lungs will look abnormal no matter what because of the CF and to be prepared for that. Coincidentally, I just read an article last week about CT scans and how the high radiation exposure from them can cause cancer later in life. I brought this concern to the doctor's attention, and we discussed it further. I agreed to schedule the scan, but only after telling her that I'd need to discuss it with Matt and also further research the risks. It's ultimately our call, of course, whether we want to risk it. It's a hard decision to make, and it will take a lot of weighing the pros vs. cons and risks vs. advantages. If we decide against it, we can cancel the appointment.
As for Cohen, he is going to be starting Pulmozyme, which is an inhaled medication with which we are quite familiar (Emberlynn has been on it since she was 22 months old). He will take it as a breathing treatment once a day. I'm a little worried that he will be upset by it for a while; after all, he's only two, and he's never been forced to leave something on his face with vapors going in his nose and mouth. It'd freak me out, too. We discussed switching from manual CPT to the Vest, but I told the doctor that we wanted to wait a little while longer because we did a "test run" recently with Cohen and the Vest, and he was, to put it mildly, less than thrilled. Emberlynn thought it was funny her first time on the Vest, but Cohen was completely terrified.
All in all, the kids' clinic visit had a positive outcome, despite the obvious reasons for clinic visits in the first place. They are both doing very well, and I can't ask for more than that.
Friday, June 25, 2010
Conner
Conner Reed Jones, April 14, 2003 to June 24, 2010.
The angel in waiting has finally gotten his wings and will never struggle for breath again.
He will always be in my heart as well as in the hearts of so many.
I refuse to sit by and watch anyone else die from this disease. We WILL find a cure. We WILL see our children grow up.
The angel in waiting has finally gotten his wings and will never struggle for breath again.
He will always be in my heart as well as in the hearts of so many.
I refuse to sit by and watch anyone else die from this disease. We WILL find a cure. We WILL see our children grow up.
Thursday, June 24, 2010
Just Breathe
How we take for granted so many things, even something as basic as breathing. Across the country tonight, a little boy named Conner is struggling to do just that.
I found out a few hours ago that 7-year-old CFer Conner is not expected to live through the night. He has been given morphine to make him more comfortable as he leaves his earthly body and arrives to meet his maker in a place where pain is nonexistent and he'll never struggle for breath again.
I hugged my kids a little tighter today, gazed at them a little longer, and told them I loved them until the words almost seemed to lose their meaning. Because it could be them. CF or not, my kids are alive tonight and will open their eyes to the sunshine pouring through their windows tomorrow. I will get another day with them, another day of smiles and laughter and hugs and kisses and playtime and funny conversations. And anything that might seem "bad" in their lives or in mine are insignificant because my kids are not fighting for their lives.
The Jones family occupies my mind, my heart, and my prayers tonight. May they find comfort and peace in this time of unbearable pain.
I found out a few hours ago that 7-year-old CFer Conner is not expected to live through the night. He has been given morphine to make him more comfortable as he leaves his earthly body and arrives to meet his maker in a place where pain is nonexistent and he'll never struggle for breath again.
I hugged my kids a little tighter today, gazed at them a little longer, and told them I loved them until the words almost seemed to lose their meaning. Because it could be them. CF or not, my kids are alive tonight and will open their eyes to the sunshine pouring through their windows tomorrow. I will get another day with them, another day of smiles and laughter and hugs and kisses and playtime and funny conversations. And anything that might seem "bad" in their lives or in mine are insignificant because my kids are not fighting for their lives.
The Jones family occupies my mind, my heart, and my prayers tonight. May they find comfort and peace in this time of unbearable pain.
Thursday, June 3, 2010
My Biggest Worries
This weekend, my husband and I are embarking on a weekend getaway for the first time since we have been married (and, hence, for the first time since we have had kids). We have been married for 4 1/2 years, so we felt like it was long overdue for some couple time sans kiddos. The kids have each spent a single night away from home less than an handful of times; I have spent two days away from Emberlynn on only two occasions (once when I gave birth to Cohen and once when Cohen was hospitalized for CF-related reasons).
We have talked about going on vacations and getaways by ourselves, but we have never actually gotten around to doing it. And I'll confess, it's mostly my own fault that it hasn't happened before. I'm a worrier and a bit uptight, so when it comes to my kids, those qualities are only magnified. If my kids were "normal" kids with no health concerns or special needs (i.e. if they didn't have CF), I would probably be more comfortable leaving them behind and would have done it long before now, I'm sure. But the reality is they aren't just normal kids with basic needs. They require tons of extra stuff that, after typing out all the kids' "instructions" for my mother, consumed over four pages of paper.
Over this past week, I actually made myself physically sick thinking of all the preparations I'd have to make just to be able to go on this weekend trip (packing, typing instructions, etc.). It's not like I can just pack each kid an overnight bag and send them on their way. Sending them anywhere, for even just 1 night (and in this case, they'll be gone for 2), requires packing up what seems like half the house. Aside from the normal clothing and toiletries, we have to pack a giant Vest machine, an air compressor (for nebs), medications, a feeding tube pole and machine plus all the stuff needed for the actual feedings, special food for the kids...the list goes on. It's insane, and it's the biggest reason we don't really go much of anywhere and also the reason we are grateful when we do.
But the packing and preparations part is not my greatest worry as far as sending the kids away. Rather, it is my worry that the things they require won't be done or done right. I realize there are different ways to doing things and that as long as it gets done I should be happy, but these are my kids I am talking about, not a list of chores that need to be done around the house. If one of them misses a treatment or doesn't get a medication at the time they need it, it's not like a pile of dirty dishes left in the sink that can be done later on. This is their health I'm dealing with, so it's not something that can just be left to "get to" at will. And even though they are staying with family members that see us regularly, they still don't understand how much we actually have to do on any given day until they actually are the ones doing it. I'm afraid something will be forgotten or not done correctly simply because they are not used to doing it on a regular basis. It is second nature to me because I do it every day, and it is as much a part of my routine as brushing my teeth or eating a meal.
Having all this to worry about always ultimately makes me change my mind about planning any getaway trips with my husband, even though we really need that alone time together. I always say, "Maybe when they are older." I've been saying this since Emberlynn was a baby, and she's almost 4 1/2.
Everything is booked and paid for (hotel, white water rafting, river boat dinner cruise) and nonrefundable, so even if I wanted to change my mind, I couldn't. I am still a little worried, but I've had time to talk myself into it, and I know it will be good for my husband and I to get out of "Daddy and Mommy mode" and focus on "husband and wife" mode instead for a couple of days.
So tomorrow, we are shipping Emberlynn and Cohen off to Grandma's house for two days. I'll try to refrain from calling constantly, but I will definitely be calling at bedtime to check in and say goodnight to my babies. I'm sure they'll have so much fun playing with everyone and swimming in the pool that they'll hardly notice we're gone, which will help me feel a little bit better about leaving them. Just a little bit.
We have talked about going on vacations and getaways by ourselves, but we have never actually gotten around to doing it. And I'll confess, it's mostly my own fault that it hasn't happened before. I'm a worrier and a bit uptight, so when it comes to my kids, those qualities are only magnified. If my kids were "normal" kids with no health concerns or special needs (i.e. if they didn't have CF), I would probably be more comfortable leaving them behind and would have done it long before now, I'm sure. But the reality is they aren't just normal kids with basic needs. They require tons of extra stuff that, after typing out all the kids' "instructions" for my mother, consumed over four pages of paper.
Over this past week, I actually made myself physically sick thinking of all the preparations I'd have to make just to be able to go on this weekend trip (packing, typing instructions, etc.). It's not like I can just pack each kid an overnight bag and send them on their way. Sending them anywhere, for even just 1 night (and in this case, they'll be gone for 2), requires packing up what seems like half the house. Aside from the normal clothing and toiletries, we have to pack a giant Vest machine, an air compressor (for nebs), medications, a feeding tube pole and machine plus all the stuff needed for the actual feedings, special food for the kids...the list goes on. It's insane, and it's the biggest reason we don't really go much of anywhere and also the reason we are grateful when we do.
But the packing and preparations part is not my greatest worry as far as sending the kids away. Rather, it is my worry that the things they require won't be done or done right. I realize there are different ways to doing things and that as long as it gets done I should be happy, but these are my kids I am talking about, not a list of chores that need to be done around the house. If one of them misses a treatment or doesn't get a medication at the time they need it, it's not like a pile of dirty dishes left in the sink that can be done later on. This is their health I'm dealing with, so it's not something that can just be left to "get to" at will. And even though they are staying with family members that see us regularly, they still don't understand how much we actually have to do on any given day until they actually are the ones doing it. I'm afraid something will be forgotten or not done correctly simply because they are not used to doing it on a regular basis. It is second nature to me because I do it every day, and it is as much a part of my routine as brushing my teeth or eating a meal.
Having all this to worry about always ultimately makes me change my mind about planning any getaway trips with my husband, even though we really need that alone time together. I always say, "Maybe when they are older." I've been saying this since Emberlynn was a baby, and she's almost 4 1/2.
Everything is booked and paid for (hotel, white water rafting, river boat dinner cruise) and nonrefundable, so even if I wanted to change my mind, I couldn't. I am still a little worried, but I've had time to talk myself into it, and I know it will be good for my husband and I to get out of "Daddy and Mommy mode" and focus on "husband and wife" mode instead for a couple of days.
So tomorrow, we are shipping Emberlynn and Cohen off to Grandma's house for two days. I'll try to refrain from calling constantly, but I will definitely be calling at bedtime to check in and say goodnight to my babies. I'm sure they'll have so much fun playing with everyone and swimming in the pool that they'll hardly notice we're gone, which will help me feel a little bit better about leaving them. Just a little bit.
Thursday, May 20, 2010
The Sucky Mom
How do you begin a blog about feeling like a sucky mom? Some days I can ask myself, "How did I do?" and the answer be okay. Other days I just wish I could rewind and do differently.
Sometimes I forget that my kids are just that: kids. They are 4 and 2 years old. They are not little adults and are still learning how to live in the world, are learning what is acceptable and unacceptable, what is wrong and what is right. Sometimes I forget to just let them be kids.
I think I just expect too much of them too much of the time. The bad thing is that I realize this, and yet I still do it. I catch myself doing it a lot when it comes to the kids and their daily routines involving managing their disease. If I sit back and look at the big picture, my kids are ABSOLUTELY AMAZING when it comes to doing their treatments, taking their enzymes, and doing all the daily requirements. Emberlynn sits on the couch for hours a day doing Vest therapy and breathing treatments, and the child has never complained about it. She takes her enzymes like a trooper and gets hooked up to her feeding tube at night without a word. And yet, if there is a day she is grouchy and doesn't feel like coughing "to get the yuckies up" (something she has to do to get up excess mucus), I get upset with her. Or when Cohen refuses to take enzymes, I get frustrated with him, as if this 2-year-old is supposed to understand the circumstances of this progressive disease and that if he doesn't take his enzymes, he doesn't absorb the nutrients from the food he is eating. And speaking of eating, getting the kids to eat adequate amounts of food is something we struggle with on a daily basis. Some days I just let it go, and other days I lose my patience and punish the kids for not eating (i.e. no book at bed, etc.) even though I know that's not the way to go about it. I guess I just get so desperate for them to eat, for them to gain weight and stay healthy, that I throw logic out the window and let my emotions get the best of me. I just forget that they are little and they just don't know. So why do I expect them to know? And better yet, why can't I seem to remember that?
I want my kids to have a great childhood. I want them to enjoy life and to grow up happy. When they are older, I want them to be able to look back and be able to say, "I had a good childhood" instead of, "My mom was a control freak and yelled at us all the time." I don't want to be that mom. I'm not sure who is quoted as saying this,but I think the following quote is definitely true: "We don't raise children. We raise parents." I am constantly learning how to be a parent, and I may never figure out the "best" way to do things, but maybe when we come out on the other side, when the "raising" part is done and the "watching" part begins, everything will turn out okay and my hope of doing the best that I could was indeed the best way.
On a recent rainy day, we were outside a restaurant near the sidewalk, and there were puddles everywhere. The kids wanted to jump in them, and the Kate-Gosselin-control-freak-and-mess-hater in me wanted to tell them, "NO! NO jumping in puddles!" But the smaller, quieter, and heard-less-often part of me decided to allow them to jump away. Because that small part of me knew that socks and shoes can be changed and clothes can be dried, but the wonderment in a child's face and the shrill of their laughter will fade away with time.
Sometimes I forget that my kids are just that: kids. They are 4 and 2 years old. They are not little adults and are still learning how to live in the world, are learning what is acceptable and unacceptable, what is wrong and what is right. Sometimes I forget to just let them be kids.
I think I just expect too much of them too much of the time. The bad thing is that I realize this, and yet I still do it. I catch myself doing it a lot when it comes to the kids and their daily routines involving managing their disease. If I sit back and look at the big picture, my kids are ABSOLUTELY AMAZING when it comes to doing their treatments, taking their enzymes, and doing all the daily requirements. Emberlynn sits on the couch for hours a day doing Vest therapy and breathing treatments, and the child has never complained about it. She takes her enzymes like a trooper and gets hooked up to her feeding tube at night without a word. And yet, if there is a day she is grouchy and doesn't feel like coughing "to get the yuckies up" (something she has to do to get up excess mucus), I get upset with her. Or when Cohen refuses to take enzymes, I get frustrated with him, as if this 2-year-old is supposed to understand the circumstances of this progressive disease and that if he doesn't take his enzymes, he doesn't absorb the nutrients from the food he is eating. And speaking of eating, getting the kids to eat adequate amounts of food is something we struggle with on a daily basis. Some days I just let it go, and other days I lose my patience and punish the kids for not eating (i.e. no book at bed, etc.) even though I know that's not the way to go about it. I guess I just get so desperate for them to eat, for them to gain weight and stay healthy, that I throw logic out the window and let my emotions get the best of me. I just forget that they are little and they just don't know. So why do I expect them to know? And better yet, why can't I seem to remember that?
I want my kids to have a great childhood. I want them to enjoy life and to grow up happy. When they are older, I want them to be able to look back and be able to say, "I had a good childhood" instead of, "My mom was a control freak and yelled at us all the time." I don't want to be that mom. I'm not sure who is quoted as saying this,but I think the following quote is definitely true: "We don't raise children. We raise parents." I am constantly learning how to be a parent, and I may never figure out the "best" way to do things, but maybe when we come out on the other side, when the "raising" part is done and the "watching" part begins, everything will turn out okay and my hope of doing the best that I could was indeed the best way.
On a recent rainy day, we were outside a restaurant near the sidewalk, and there were puddles everywhere. The kids wanted to jump in them, and the Kate-Gosselin-control-freak-and-mess-hater in me wanted to tell them, "NO! NO jumping in puddles!" But the smaller, quieter, and heard-less-often part of me decided to allow them to jump away. Because that small part of me knew that socks and shoes can be changed and clothes can be dried, but the wonderment in a child's face and the shrill of their laughter will fade away with time.
Friday, May 7, 2010
The "Uneventful" Clinic Visit
On Thursday, we trekked to Vandy for the kids' quarterly CF Clinic visit. Despite the flooding in Nashville and various road closures, we actually made it to Vanderbilt in record time. Matt was able to go to this appointment since he is unable to work indefinitely (his work was one of the businesses that was flooded last weekend), so despite the fact that we basically have no source of income right now, it was nice to have Daddy there with us.
I was very proud of Emberlynn because she volunteered to go first (she usually volunteers her brother to be the first to go) and was extremely cooperative for everything, even the throat swab (which she usually cries about). She was absolutely perfect, and I couldn't have been more proud of her. Cohen was a bit crabby due to being up late the night before and having to get up early in the morning. He was cooperative for the initial exam by the nurse (height, weight, oxygen level, and temp checked) and when the doctor examined him (listening to his lungs, feeling his belly, etc.). However, he hated having the EMLA cream put on him to numb his arms prior to having his blood drawn, and he also took great displeasure, as per usual, at having his throat swabbed. (And, on a side note that has nothing directly to do with the appointment, the nurse we saw had an uncanny resemblence to Tina Fey and also possessed her mannerisms...weird!)
I call this appointment "uneventful" because the kids were both given good reports, and no changes were made to their medications or treatment plans. However, to anyone who doesn't go to these appointments on a regular basis, I suppose it would be pretty eventful because of all the things the nurses and doctors have to check and the number of people we have to see (nurse, doctor, dietician, social worker, and respiratory therapist).
I believe the most thrilling part of the whole visit for the kids was getting Dora the Explorer stickers and coloring sheets from Nurse Tina Fey. Emberlynn stuck a sticker on each one of us, so on the way out, we were all sporting our awesome Dora stickers with the wonderful knowledge that the kids are doing well despite that ugly disease called CF.
I was very proud of Emberlynn because she volunteered to go first (she usually volunteers her brother to be the first to go) and was extremely cooperative for everything, even the throat swab (which she usually cries about). She was absolutely perfect, and I couldn't have been more proud of her. Cohen was a bit crabby due to being up late the night before and having to get up early in the morning. He was cooperative for the initial exam by the nurse (height, weight, oxygen level, and temp checked) and when the doctor examined him (listening to his lungs, feeling his belly, etc.). However, he hated having the EMLA cream put on him to numb his arms prior to having his blood drawn, and he also took great displeasure, as per usual, at having his throat swabbed. (And, on a side note that has nothing directly to do with the appointment, the nurse we saw had an uncanny resemblence to Tina Fey and also possessed her mannerisms...weird!)
I call this appointment "uneventful" because the kids were both given good reports, and no changes were made to their medications or treatment plans. However, to anyone who doesn't go to these appointments on a regular basis, I suppose it would be pretty eventful because of all the things the nurses and doctors have to check and the number of people we have to see (nurse, doctor, dietician, social worker, and respiratory therapist).
I believe the most thrilling part of the whole visit for the kids was getting Dora the Explorer stickers and coloring sheets from Nurse Tina Fey. Emberlynn stuck a sticker on each one of us, so on the way out, we were all sporting our awesome Dora stickers with the wonderful knowledge that the kids are doing well despite that ugly disease called CF.
Monday, April 26, 2010
Prayers
It's been a while since I've blogged, and I wish I could say I had some kind of great story or funny anecdote to share with you. But I don't. All I can think of is how much I hate Cystic Fibrosis and how unfair it is for so many people to carry this burden. There are so many diseases and disorders and syndromes and cancers out there that affect so many people, but until something affects you or someone you love, it's impact is not as great.
I am blessed that although my children have CF, they have been relatively healthy, but because CF is a progressive disease, it's always in the back of my mind that things can change in a heartbeat. To borrow a line from another CF parent, as soon as my children took their first breaths, CF began taking away their tomorrows. Only half of people with CF will live to be 37. Half.
There is a CF mom right now whose 7-year-old CFer, Conner, has been put under hospice care. This boy has been through hell, and he just turned 7. I can not imagine either of my kids having to go through even half of what this boy has gone through or fight as hard as he has fought, and yet the end of his life is near, a life that never really even began. Like any child, he talks about what he'll do when he grows up, not realizing that he'll be lucky to even make it to his eighth birthday.
My heart aches for Conner and for his family. His mom, Sarah, blogs about Conner and their everyday struggles, at http://notsobrightandshiny.blogspot.com/. I do hope you visit her blog. She has the courage and strength to speak not only for her son but for all CFers, educating others on this seemingly invisible yet ugly and devastating disease.
I know I could blog forever about CF, about my kids and their struggles, about Conner and his fight, about how much CF sucks, but I've cried enough tears tonight and dwelled in the crappy knowledge that my kids have CF--and other peoples kids have CF--and we can't fix it. We can only pray that one day there will finally be a cure. That one day our kids will be fixed. That one day they will become what they want to be "when they grow up." That one day we can say they won't die from CF and it will be the truth.
For now, I will love my kids with every fiber of my being and never forget to tell them that. I will be the best mom I can be and give them the best life I can give them. In the words of Conner's mom Sarah: "I know [Conner] is only on loan to me from God...and I count each day as a blessing...had I know he was only going to be here with me for seven short years, I would've made them better. I would've been better. I would've done more for him. More smiles...more family memories...but now...it's all moving so swiftly in the other direction that all I have are the undones and what-ifs...and that's devastating." I pray that I will never have to say these words myself. I pray for Sarah and for the rest of Conner's family, that they can find strength and comfort in a time when it's difficult to find such things. Most of all, I pray for a cure for CF, so lives like Conner's won't be lost anymore.
Damn you, CF.
I am blessed that although my children have CF, they have been relatively healthy, but because CF is a progressive disease, it's always in the back of my mind that things can change in a heartbeat. To borrow a line from another CF parent, as soon as my children took their first breaths, CF began taking away their tomorrows. Only half of people with CF will live to be 37. Half.
There is a CF mom right now whose 7-year-old CFer, Conner, has been put under hospice care. This boy has been through hell, and he just turned 7. I can not imagine either of my kids having to go through even half of what this boy has gone through or fight as hard as he has fought, and yet the end of his life is near, a life that never really even began. Like any child, he talks about what he'll do when he grows up, not realizing that he'll be lucky to even make it to his eighth birthday.
My heart aches for Conner and for his family. His mom, Sarah, blogs about Conner and their everyday struggles, at http://notsobrightandshiny.blogspot.com/. I do hope you visit her blog. She has the courage and strength to speak not only for her son but for all CFers, educating others on this seemingly invisible yet ugly and devastating disease.
I know I could blog forever about CF, about my kids and their struggles, about Conner and his fight, about how much CF sucks, but I've cried enough tears tonight and dwelled in the crappy knowledge that my kids have CF--and other peoples kids have CF--and we can't fix it. We can only pray that one day there will finally be a cure. That one day our kids will be fixed. That one day they will become what they want to be "when they grow up." That one day we can say they won't die from CF and it will be the truth.
For now, I will love my kids with every fiber of my being and never forget to tell them that. I will be the best mom I can be and give them the best life I can give them. In the words of Conner's mom Sarah: "I know [Conner] is only on loan to me from God...and I count each day as a blessing...had I know he was only going to be here with me for seven short years, I would've made them better. I would've been better. I would've done more for him. More smiles...more family memories...but now...it's all moving so swiftly in the other direction that all I have are the undones and what-ifs...and that's devastating." I pray that I will never have to say these words myself. I pray for Sarah and for the rest of Conner's family, that they can find strength and comfort in a time when it's difficult to find such things. Most of all, I pray for a cure for CF, so lives like Conner's won't be lost anymore.
Damn you, CF.
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