Christmas has always been my favorite time of year. I can't wait for Christmas music to start playing on the radio. I love seeing decorations and lights everywhere. I love the feeling of joy and peace in the air. I just love the whole season. It makes me feel like the world is good, even if the feeling only lasts a short time.
Last year, my son was born four days before Christmas. Although I was ready for him to arrive, I was in no way prepared for the aftermath. I'm not talking about going from having one child to two. I'm talking about the postpartum depression I went through. It was absolutely awful, and I never want to experience anything like that again. It was the lowest and darkest part of my life, hands down.
Don't get me wrong, I was overjoyed to have my son, and I never allowed the way I felt interfere with taking care of him or Emberlynn. If anything, I was more caring because I wanted them both to feel loved despite my condition.
Christmas day came, and since I was so down, it was a horrible day. I cried all day. Little things--random things--would set me off. Someone could merely just hug me and say, "Merry Christmas!" and I would burst into tears. I hated that everyone had to see me that way, and I felt like I was ruining everyone else's day. It's supposed to be a day full of smiles and happiness and joy, and I just didn't feel any of it. I was hoping it would raise my spirits and make me less depressed, but if anything, it made me feel worse.
Everyone has a most memorable Christmas. Last year was mine; so I guess not everyone's is necessarily a happy memory.
This year, I know Christmas day won't be like that for me. I've gotten over the postpartum (mostly) and am looking forward to having a wonderful day with my husband and two amazing children. Emberlynn is more into Christmas and Santa and the whole shebang this year, and Cohen is old enough to enjoy it a little more (as opposed to being only 4 days old last year). We'll listen to the Christmas music on the radio, and I'll be singing along with a smile instead of bursting into tears. I will feel at peace rather than full of despair. Best of all, the world will be a good place, and the everyday struggles of life will disappear, just for that short time.
Merry Christmas to all. May you, too, feel the peace and joy that surrounds us.
Wednesday, December 24, 2008
Sunday, October 19, 2008
Cohen's Story
I realized I have not yet posted a blog about Cohen as far as how he was diagnosed with CF. I meant to do this several weeks ago when we were raising money for CFF. I still want to share it with those who may or may not know the story.
Because Matt and I each carry a defective gene for CF, every child we have has a 1 in 4 chance of having the disease. We, of course, did not know we carried the genes until after we had Emberlynn and she was diagnosed with CF because a person can only have the disease if both parents are carriers. It’s just like if we each carried a recessive gene for blue eyes; we don’t have blue eyes, but our children could potentially have blue eyes (and, incidentally, Emberlynn does have blue eyes).
It broke my heart knowing these odds. Matt and I knew we wanted more children. I could not bare the thought of thinking I would never have another child because we let the chances of them having this disease stop us. We talked about having another child soon after Emberlynn turned one. We decided that even though there was a chance of having another child with CF, we would be prepared for it and would at least be well-versed in the disease.
I found out I was expecting in April and was given a due date of January 1st. From the beginning, I suspected I was having a boy, which was exciting. It would be wonderful to have both a daughter and a son, and I looked forward to the different challenges of a boy as opposed to a girl.
For the duration of my pregnancy, the thought of the CF possibility was always firmly implanted in my mind, but I tried to stay positive. Family and friends remained optimistic, so I tried to feed off that.
My beautiful son Cohen Micah was born December 21, 2007. He was by far the most beautiful baby boy I have ever laid eyes on. His head was full of dark, silky hair, and his eyes were a deep blue. I kept saying to Matt, “Isn’t he beautiful?” He was absolutely perfect.
We were not able to have him tested in the hospital, so I had to schedule an appointment at Vanderbilt to have them draw blood to do a genetic test. Because Emberlynn has CF, they know the exact genes they would need to look for in the DNA, so a sweat test would be unnecessary to test him. In mid-January, when he was three weeks old, we had the blood drawn. I was told it would take anywhere from two to four weeks to have the results back.
Even though I was a bundle of nerves waiting for the results to come back, I was trying to stay positive. Cohen was steadily gaining weight (as opposed to Emberlynn, who struggled with weight gain from the very beginning), so I told myself it was a sign that he may not have it. But there was this ever-present fear that he was not fine. I tried to suppress it, but it was always there.
On the afternoon of Wednesday, February 6, Matt and I were sitting on the couch watching TV. Cohen was sleeping soundly on Matt’s chest, and my phone rang. I recognized the number as a Vanderbilt number, and I was immediately tense. When I answered, it was a nurse who calmly explained that Cohen’s results had come back and were the same as Emberlynn’s, which meant he, too, had CF.
As soon as I hung up with the nurse, I broke down in hysterics. Matt knew how the conversation had gone without my explaining anything. I took Cohen from him and pulled my baby boy close to me, as if holding him and whispering how sorry I was could somehow take it away.
I kept saying to Matt, “What have we done to our babies?” I felt guilty that we brought another child into the world knowing what the consequences could be. I just wanted to take it away from him and Emberlynn and for me to be the one who would have to suffer through life instead of them.
Even though I told myself from the beginning of the pregnancy that I would be prepared and I would be able to handle it, no amount of convincing can ever prepare you to hear news like that all over again. I felt like I was back in the exam room at Vanderbilt the day Emberlynn was diagnosed. It was like a recurring nightmare from which you wake up screaming.
And here we are now. Cohen is nearly a year old, which I can barely get my mind around. He is, without a doubt, a mommy’s boy, which is fine by me. I love his big, contagious grin, his belly laughs, his funny faces, the crazy sounds he makes--I can’t get enough of him. I would not trade my son or anything about him.
Having two children with CF is very difficult. Matt and I are responsible not only for the normal things parents do but also for keeping our children as healthy as we can by doing therapies and treatments for them. We have good days and bad days. Most days go by and I just go with it, not knowing a life any different. But there are some days I just cry because the reality of it all rips my heart to shreds. My children have a disease that can and will most likely take their life one day. And if you have children, you know that having something like that in the back of your mind will eat at you.
I have never been angry with God. I am extremely blessed to have my children, and I suppose God felt I could handle this kind of thing. I will admit I have questioned Him, but most of the time, I just pray that He keeps His hand over my children and to give me the strength to carry on and to help me be a good mom to my children. I hope when they get older that they can sincerely say that I did okay. Because I’m really trying. I’m doing the best I can.
Because Matt and I each carry a defective gene for CF, every child we have has a 1 in 4 chance of having the disease. We, of course, did not know we carried the genes until after we had Emberlynn and she was diagnosed with CF because a person can only have the disease if both parents are carriers. It’s just like if we each carried a recessive gene for blue eyes; we don’t have blue eyes, but our children could potentially have blue eyes (and, incidentally, Emberlynn does have blue eyes).
It broke my heart knowing these odds. Matt and I knew we wanted more children. I could not bare the thought of thinking I would never have another child because we let the chances of them having this disease stop us. We talked about having another child soon after Emberlynn turned one. We decided that even though there was a chance of having another child with CF, we would be prepared for it and would at least be well-versed in the disease.
I found out I was expecting in April and was given a due date of January 1st. From the beginning, I suspected I was having a boy, which was exciting. It would be wonderful to have both a daughter and a son, and I looked forward to the different challenges of a boy as opposed to a girl.
For the duration of my pregnancy, the thought of the CF possibility was always firmly implanted in my mind, but I tried to stay positive. Family and friends remained optimistic, so I tried to feed off that.
My beautiful son Cohen Micah was born December 21, 2007. He was by far the most beautiful baby boy I have ever laid eyes on. His head was full of dark, silky hair, and his eyes were a deep blue. I kept saying to Matt, “Isn’t he beautiful?” He was absolutely perfect.
We were not able to have him tested in the hospital, so I had to schedule an appointment at Vanderbilt to have them draw blood to do a genetic test. Because Emberlynn has CF, they know the exact genes they would need to look for in the DNA, so a sweat test would be unnecessary to test him. In mid-January, when he was three weeks old, we had the blood drawn. I was told it would take anywhere from two to four weeks to have the results back.
Even though I was a bundle of nerves waiting for the results to come back, I was trying to stay positive. Cohen was steadily gaining weight (as opposed to Emberlynn, who struggled with weight gain from the very beginning), so I told myself it was a sign that he may not have it. But there was this ever-present fear that he was not fine. I tried to suppress it, but it was always there.
On the afternoon of Wednesday, February 6, Matt and I were sitting on the couch watching TV. Cohen was sleeping soundly on Matt’s chest, and my phone rang. I recognized the number as a Vanderbilt number, and I was immediately tense. When I answered, it was a nurse who calmly explained that Cohen’s results had come back and were the same as Emberlynn’s, which meant he, too, had CF.
As soon as I hung up with the nurse, I broke down in hysterics. Matt knew how the conversation had gone without my explaining anything. I took Cohen from him and pulled my baby boy close to me, as if holding him and whispering how sorry I was could somehow take it away.
I kept saying to Matt, “What have we done to our babies?” I felt guilty that we brought another child into the world knowing what the consequences could be. I just wanted to take it away from him and Emberlynn and for me to be the one who would have to suffer through life instead of them.
Even though I told myself from the beginning of the pregnancy that I would be prepared and I would be able to handle it, no amount of convincing can ever prepare you to hear news like that all over again. I felt like I was back in the exam room at Vanderbilt the day Emberlynn was diagnosed. It was like a recurring nightmare from which you wake up screaming.
And here we are now. Cohen is nearly a year old, which I can barely get my mind around. He is, without a doubt, a mommy’s boy, which is fine by me. I love his big, contagious grin, his belly laughs, his funny faces, the crazy sounds he makes--I can’t get enough of him. I would not trade my son or anything about him.
Having two children with CF is very difficult. Matt and I are responsible not only for the normal things parents do but also for keeping our children as healthy as we can by doing therapies and treatments for them. We have good days and bad days. Most days go by and I just go with it, not knowing a life any different. But there are some days I just cry because the reality of it all rips my heart to shreds. My children have a disease that can and will most likely take their life one day. And if you have children, you know that having something like that in the back of your mind will eat at you.
I have never been angry with God. I am extremely blessed to have my children, and I suppose God felt I could handle this kind of thing. I will admit I have questioned Him, but most of the time, I just pray that He keeps His hand over my children and to give me the strength to carry on and to help me be a good mom to my children. I hope when they get older that they can sincerely say that I did okay. Because I’m really trying. I’m doing the best I can.
Thursday, August 7, 2008
Emberlynn's Story
Most of you have heard this before, and Lord knows I've told so many people that the words just tumble out like a rehearsed scene. But because we are trying to raise money for the CF Foundation and are trying to educate people on this disease, I thought I would first start by sharing when CF became a major part of our lives.
Emberlynn was born beautiful and healthy, weighing in at 7 lbs, 2 ounces and measuring 18 1/2 inches long. She was perfect in mine and Matt's eyes. She was our first baby, our precious little girl, and she instantly brought joy to our lives.
At her two-week check-up, she was still a mere 6 1/2 lbs. All babies lose weight when they are born but are expected to regain the weight and reach their birth weight again by 2 weeks. Emberlynn was breastfed, and the pediatrician explained that sometimes breastfed babies took longer than others to regain the weight. The following week when we revisited the pediatrician for a weight check, Emberlynn did not fare much better.
Every week for several weeks, we had to have weight checks at the doctor's office. Emberlynn's weight slowly crept up, but merely a couple of ounces at a time. The pediatrician suggested it was possible my breast milk did not have enough calories, so we began supplementing. Emberlynn put on weight somewhat faster, but it was still a very slow process. She finally reached her birth weight by 9 weeks. She was tiny and had 'chicken legs.'
Over the next couple of months, her weight still just barely increased. At one point, I had mentioned to the pediatrician that I had a cousin who had Cystic Fibrosis, and I knew that poor weight gain (failure to thrive), was a sympton. Since Emberlynn did not appear to have any other symptoms (i.e. respiratory problems), she said it was unlikely that CF was the cause.
In late June, the pediatrician finally decided to send Emberlynn to be tested for CF at Vanderbilt. The appointment was made for late July, and I was somewhat nervous but told myself it would be fine. The pediatrician was optimistic, so I felt like I should be, too.
On July 24th, Emberlynn had a 'sweat test,' which measures the level of salt in the sweat. High levels of salt indicate CF (people with CF lose more salt through their sweat glands than the average person). The results were back that day, and they were worrisome. They tested her again the following day, July 25th (they do a second if the first is abnormal), and the results were the same. When the pulmonary doctor at Vanderbilt walked in the exam room with a solemn look, I broke down. I knew a lot about CF because my cousin had it (she passed away from it a few years ago), and I was devastated to hear my own child had this life-threatening disease. I remember the doctor saying, 'Yes, she has CF. Yes, it is distressing. But all the hopes and dreams you have for her will still happen.' I carry his words with me and try to think about them when I am hit with the reality of my children's conditions.
Fast-forward just over two years later, and Emberlynn is a happy, well-adjusted, loving, and thriving two-and-a-half-year-old little girl. A lot has happened since she was diagnosed, some good, some ugly, but she is doing well despite the disease, and it is all we can ask for.
I will continue to post more about our struggles and our triumphs with this disease with both children. I will post Cohen's story about how he was diagnosed and how we were a bit more prepared since we knew it was a possibility. I want everyone to know and understand how CF affects peoples' lives and be more open and willing to donate to this cause.
Emberlynn was born beautiful and healthy, weighing in at 7 lbs, 2 ounces and measuring 18 1/2 inches long. She was perfect in mine and Matt's eyes. She was our first baby, our precious little girl, and she instantly brought joy to our lives.
At her two-week check-up, she was still a mere 6 1/2 lbs. All babies lose weight when they are born but are expected to regain the weight and reach their birth weight again by 2 weeks. Emberlynn was breastfed, and the pediatrician explained that sometimes breastfed babies took longer than others to regain the weight. The following week when we revisited the pediatrician for a weight check, Emberlynn did not fare much better.
Every week for several weeks, we had to have weight checks at the doctor's office. Emberlynn's weight slowly crept up, but merely a couple of ounces at a time. The pediatrician suggested it was possible my breast milk did not have enough calories, so we began supplementing. Emberlynn put on weight somewhat faster, but it was still a very slow process. She finally reached her birth weight by 9 weeks. She was tiny and had 'chicken legs.'
Over the next couple of months, her weight still just barely increased. At one point, I had mentioned to the pediatrician that I had a cousin who had Cystic Fibrosis, and I knew that poor weight gain (failure to thrive), was a sympton. Since Emberlynn did not appear to have any other symptoms (i.e. respiratory problems), she said it was unlikely that CF was the cause.
In late June, the pediatrician finally decided to send Emberlynn to be tested for CF at Vanderbilt. The appointment was made for late July, and I was somewhat nervous but told myself it would be fine. The pediatrician was optimistic, so I felt like I should be, too.
On July 24th, Emberlynn had a 'sweat test,' which measures the level of salt in the sweat. High levels of salt indicate CF (people with CF lose more salt through their sweat glands than the average person). The results were back that day, and they were worrisome. They tested her again the following day, July 25th (they do a second if the first is abnormal), and the results were the same. When the pulmonary doctor at Vanderbilt walked in the exam room with a solemn look, I broke down. I knew a lot about CF because my cousin had it (she passed away from it a few years ago), and I was devastated to hear my own child had this life-threatening disease. I remember the doctor saying, 'Yes, she has CF. Yes, it is distressing. But all the hopes and dreams you have for her will still happen.' I carry his words with me and try to think about them when I am hit with the reality of my children's conditions.
Fast-forward just over two years later, and Emberlynn is a happy, well-adjusted, loving, and thriving two-and-a-half-year-old little girl. A lot has happened since she was diagnosed, some good, some ugly, but she is doing well despite the disease, and it is all we can ask for.
I will continue to post more about our struggles and our triumphs with this disease with both children. I will post Cohen's story about how he was diagnosed and how we were a bit more prepared since we knew it was a possibility. I want everyone to know and understand how CF affects peoples' lives and be more open and willing to donate to this cause.
Wednesday, July 2, 2008
Time
I feel very "out of the loop." I have friends I don't get to talk to or see much because life is so hectic. And when I do get some down time, I just want to spend it with my husband and kids. I want to relish in the normal parts of life because so much of mine and Matt's and the kids' life together is so, well, not normal. I get so upset when people don't seem to understand that. Some people don't realize we can't just drop everything and do whatever.
I am relieved, however, to announce that I will be leaving my job at the beginning of August to stay at home to devote my time to my children. I have wanted this for a long time, and we have finally worked it out. My wonderful husband has been extremely supportive of this; he feels I belong at home with our kids as well. Being at home will allow me to take care of all their medical needs and be able to have quality time with them instead of having to rush around every day trying to get ready for work and then going to work all day and coming home late just to have to make dinner and get the kids ready for bed. Each day that passes is one day gone of their childhood. They don't stay like this forever, and it pains me thinking of all the moments I am missing being away from them like I am. It melts my heart when I walk in from work and Emberlynn runs to me, yelling, "Mommy! Mommy!" and Cohen sees me and gets excited and starts fussing until I go pick him up and hold him tight.
I'll miss my job and being able to have adult interaction during the day, but my kids are worth it, and this time with them is precious. I am so blessed to have this opportunity. There are so many moms who want to stay home who can't. So even though I know it won't always be blissful being with two small children all day long, I'll remember to still be grateful to have the opportunity so many others don't.
Maybe once I stay home and things settle down for us, we will be able to see more of our friends and family we are slowly losing touch with. It makes me sad, but we are not doing it on purpose, and I hope everyone understands that.
I am relieved, however, to announce that I will be leaving my job at the beginning of August to stay at home to devote my time to my children. I have wanted this for a long time, and we have finally worked it out. My wonderful husband has been extremely supportive of this; he feels I belong at home with our kids as well. Being at home will allow me to take care of all their medical needs and be able to have quality time with them instead of having to rush around every day trying to get ready for work and then going to work all day and coming home late just to have to make dinner and get the kids ready for bed. Each day that passes is one day gone of their childhood. They don't stay like this forever, and it pains me thinking of all the moments I am missing being away from them like I am. It melts my heart when I walk in from work and Emberlynn runs to me, yelling, "Mommy! Mommy!" and Cohen sees me and gets excited and starts fussing until I go pick him up and hold him tight.
I'll miss my job and being able to have adult interaction during the day, but my kids are worth it, and this time with them is precious. I am so blessed to have this opportunity. There are so many moms who want to stay home who can't. So even though I know it won't always be blissful being with two small children all day long, I'll remember to still be grateful to have the opportunity so many others don't.
Maybe once I stay home and things settle down for us, we will be able to see more of our friends and family we are slowly losing touch with. It makes me sad, but we are not doing it on purpose, and I hope everyone understands that.
Monday, June 2, 2008
So...yeah
I don't know about everyone else, but I can't believe it's June already. Where did the first half of the year go? It's crazy.
We finally closed on our house a couple of weeks ago. (Yay!) We are homeowners. Scary but liberating. So far, no regrets.
We've been purchasing things for our new home. We just bought the kids a swing set (Cohen can't really enjoy it just yet, lol), and we got a new washer and dryer because our old set was around when the dinosaurs roamed the earth. I just have to say, you know you are getting old when you get excited about buying new appliances.
I love being able to take my kids outside and there be an actual yard for them to play in. It's quiet and peaceful, and it reassures me that we made a good decision for our family.
Matt starts a new job next week. His last day at his current job is tomorrow (yay!). We're looking forward to having more time together and to him not being so stressed out. I know he's been counting down to his last day there. So have I. I miss him.
Emberlynn has been sick the past few days, and even though I hate that she's not feeling too great, it's during these times that she gets particularly cuddly and clingy. It makes me feel pretty special when she just wants me to hold her. I know times like these won't last, so I hold her close and cover her in kisses and tell her how much I love her.
My little man Cohen is doing pretty well. He's growing every day and learning new things all the time. He's almost six months old, which I can't believe. Sometimes I wish I could just keep him little like this forever; other times I am curious about what he will be like as he grows. For now, I'm just enjoying all the little moments we have together.
So I guess that's the scoop. The update on what's going on in my life. For those who care to know, anyway.
We finally closed on our house a couple of weeks ago. (Yay!) We are homeowners. Scary but liberating. So far, no regrets.
We've been purchasing things for our new home. We just bought the kids a swing set (Cohen can't really enjoy it just yet, lol), and we got a new washer and dryer because our old set was around when the dinosaurs roamed the earth. I just have to say, you know you are getting old when you get excited about buying new appliances.
I love being able to take my kids outside and there be an actual yard for them to play in. It's quiet and peaceful, and it reassures me that we made a good decision for our family.
Matt starts a new job next week. His last day at his current job is tomorrow (yay!). We're looking forward to having more time together and to him not being so stressed out. I know he's been counting down to his last day there. So have I. I miss him.
Emberlynn has been sick the past few days, and even though I hate that she's not feeling too great, it's during these times that she gets particularly cuddly and clingy. It makes me feel pretty special when she just wants me to hold her. I know times like these won't last, so I hold her close and cover her in kisses and tell her how much I love her.
My little man Cohen is doing pretty well. He's growing every day and learning new things all the time. He's almost six months old, which I can't believe. Sometimes I wish I could just keep him little like this forever; other times I am curious about what he will be like as he grows. For now, I'm just enjoying all the little moments we have together.
So I guess that's the scoop. The update on what's going on in my life. For those who care to know, anyway.
Wednesday, April 9, 2008
Yes, I am still alive
It’s been a while since I’ve blogged (looks like it will be a once-a-month thing). My days are busy but precious. My kids are growing and changing everyday, and they never cease to amaze me. Emberlynn is a little chatterbox who is now learning how to use the potty (let’s hope she’s trained soon!!). Cohen will be four months old on April 21st, and he is a little love bug. He is always happy and full of smiles, and he knows just how to melt Mommy’s heart. Emberlynn is a wonderful big sister who loves her brother (most of the time, lol), and she is Mommy’s big helper.
A piece of exciting news: Matt and I have taken a big step and are buying our first house. We close on April 25th. It is a frightening but liberating feeling, and although we are scared out of our minds, we are so extremely thrilled that we can call our home ours. Mind you, I would totally love to skip the entire packing and moving part of it, but in the end, it will be so worth it. Our house is in Bethpage just outside of Gallatin (not in the boonies, lol). We are looking forward to having more space and a big backyard for our kids in a quiet and safe neighborhood.
My only complaints right now are as follows: I am always tired because I am up late getting stuff done around the house and up early in the morning with Cohen and Emberlynn. I think if I went to sleep at any given time and got to sleep with no interruptions, I would probably sleep three days straight. I’m pretty sure that’s no exaggeration. Also, I am hating packing, I only have just over two weeks left to finish, and I have been doing it by myself.
Okay, sorry, I had to complain. I’m human, right?
Life may not always be bliss, but it’s mine, and I wouldn’t trade any of it. (Except for the packing.)
A piece of exciting news: Matt and I have taken a big step and are buying our first house. We close on April 25th. It is a frightening but liberating feeling, and although we are scared out of our minds, we are so extremely thrilled that we can call our home ours. Mind you, I would totally love to skip the entire packing and moving part of it, but in the end, it will be so worth it. Our house is in Bethpage just outside of Gallatin (not in the boonies, lol). We are looking forward to having more space and a big backyard for our kids in a quiet and safe neighborhood.
My only complaints right now are as follows: I am always tired because I am up late getting stuff done around the house and up early in the morning with Cohen and Emberlynn. I think if I went to sleep at any given time and got to sleep with no interruptions, I would probably sleep three days straight. I’m pretty sure that’s no exaggeration. Also, I am hating packing, I only have just over two weeks left to finish, and I have been doing it by myself.
Okay, sorry, I had to complain. I’m human, right?
Life may not always be bliss, but it’s mine, and I wouldn’t trade any of it. (Except for the packing.)
Tuesday, March 4, 2008
A Moment
I finally have a moment to sit here and blog for a few minutes. I know everyone always says, "Well, I've just been busy," but in my case, it really is not an overstatement. Here's a breakdown:
Cohen was diagnosed with CF on February 6th. It was devastating to me to hear those words when I got the call. I was pretty numb about it for several days after. He was hospitalized on the 12th to have I.V. antibiotics to prevent a bacterial infection from forming in his lungs because he had had a persistent cough. He was (thankfully) released from the hospital two days later (on Emberlynn's 2nd birthday, which was also Valentine's Day).
I went back to work on February 18th. I really want to be able to stay at home with my two kids, especially because caring for two children with CF is so extremely demanding. Unfortunately, we can't afford for me to do that at this point. I cry about it a lot. My time at home with them consists of feeding them (nursing Cohen and doing Em's feeding tube) and doing chest physiotherapy and breathing treatments. And my time away from them while at work could be time spent with them just playing and having downtime together. I feel like after I do all the "requirements" for them to help fight their disease, I am so spent that there is nothing left of me to give as a mother or a wife. It's hard to explain. Basically, I feel like the best of me is gone and I can't give a hundred percent to my husband or my kids.
I look at my children and see these perfect little beings and wonder how this ugly disease can be inside them. It literally makes my heart ache wondering how long they have. It's morbid, but it's true, and I don't know what I would do if I outlived both my children. Children are supposed to bury their parents, not the other way around. I know everyone worries about their own children; it's in a parent's nature. But when your children have a life-shortening disease and their health is in your hands every single day, it can make you sick with fear.
I know everyone is going to say to think positively and to just pray and to look at all the good. I do all that, trust me. But I have these moments when I just want to curl up and cry and hold my babies and beg God to make them better. Like right now. You would too, if it were you.
Cohen was diagnosed with CF on February 6th. It was devastating to me to hear those words when I got the call. I was pretty numb about it for several days after. He was hospitalized on the 12th to have I.V. antibiotics to prevent a bacterial infection from forming in his lungs because he had had a persistent cough. He was (thankfully) released from the hospital two days later (on Emberlynn's 2nd birthday, which was also Valentine's Day).
I went back to work on February 18th. I really want to be able to stay at home with my two kids, especially because caring for two children with CF is so extremely demanding. Unfortunately, we can't afford for me to do that at this point. I cry about it a lot. My time at home with them consists of feeding them (nursing Cohen and doing Em's feeding tube) and doing chest physiotherapy and breathing treatments. And my time away from them while at work could be time spent with them just playing and having downtime together. I feel like after I do all the "requirements" for them to help fight their disease, I am so spent that there is nothing left of me to give as a mother or a wife. It's hard to explain. Basically, I feel like the best of me is gone and I can't give a hundred percent to my husband or my kids.
I look at my children and see these perfect little beings and wonder how this ugly disease can be inside them. It literally makes my heart ache wondering how long they have. It's morbid, but it's true, and I don't know what I would do if I outlived both my children. Children are supposed to bury their parents, not the other way around. I know everyone worries about their own children; it's in a parent's nature. But when your children have a life-shortening disease and their health is in your hands every single day, it can make you sick with fear.
I know everyone is going to say to think positively and to just pray and to look at all the good. I do all that, trust me. But I have these moments when I just want to curl up and cry and hold my babies and beg God to make them better. Like right now. You would too, if it were you.
Saturday, January 26, 2008
I know I shouldn't worry...but I do anyway...
I have tons of thoughts going on in my head lately. And since blogging is pretty much like "writing" in a diary to me, I am going to lay them all out there right now.
1. I am getting very used to having two children. Strangely, I feel like I have always had two. It's weird, but true: after you have a children, you can't imagine life without them, and it feels like they have always been there. Things are a little more chaotic with two rather than one, but I feel like I am balancing everything pretty well now. However, I will admit that I have yet to go to a store with both kids by myself. Matt or someone else is always with me. It's not that I don't think I can't "handle" two, it's the fact that they both would have to ride in the cart, and then where would I put the merchandise?? Exactly.
2. Cohen might have CF. This is terrifying for me. I know that it's something we know about and are used to because of Emberlynn, but it really doesn't make it any easier. If Cohen has it, I don't think I'll ever be able to completely forgive myself for deliberately bringing another child into the world knowing that he could end up with it, too. I know we did not purposely give it to Emberlynn, but we knew after having her that every child we have has a 25% chance of having the disease. At this point, we know from one of the blood tests that Cohen is a carrier of CF (one gene was identified) , but it will be a few more weeks before we know if he has the other gene, which means he has CF. I'm trying to prepare myself. When I was pregnant with him, I told myself that if he ended up with CF I could emotionally handle it, but now that he is here and I look at him and want to protect him from everything, I really don't think I can take it. I will never forget the day Emberlynn was diagnosed and how I cried myself to sleep that night, wishing there was some way I could take the disease from her and let it be my burden, not hers. I don't want that for my son, either.
I'll end on a positive note: I have two incredible, amazing, wonderful, beautiful children, and I would not trade being their mother for anything in the world, no matter what.
1. I am getting very used to having two children. Strangely, I feel like I have always had two. It's weird, but true: after you have a children, you can't imagine life without them, and it feels like they have always been there. Things are a little more chaotic with two rather than one, but I feel like I am balancing everything pretty well now. However, I will admit that I have yet to go to a store with both kids by myself. Matt or someone else is always with me. It's not that I don't think I can't "handle" two, it's the fact that they both would have to ride in the cart, and then where would I put the merchandise?? Exactly.
2. Cohen might have CF. This is terrifying for me. I know that it's something we know about and are used to because of Emberlynn, but it really doesn't make it any easier. If Cohen has it, I don't think I'll ever be able to completely forgive myself for deliberately bringing another child into the world knowing that he could end up with it, too. I know we did not purposely give it to Emberlynn, but we knew after having her that every child we have has a 25% chance of having the disease. At this point, we know from one of the blood tests that Cohen is a carrier of CF (one gene was identified) , but it will be a few more weeks before we know if he has the other gene, which means he has CF. I'm trying to prepare myself. When I was pregnant with him, I told myself that if he ended up with CF I could emotionally handle it, but now that he is here and I look at him and want to protect him from everything, I really don't think I can take it. I will never forget the day Emberlynn was diagnosed and how I cried myself to sleep that night, wishing there was some way I could take the disease from her and let it be my burden, not hers. I don't want that for my son, either.
I'll end on a positive note: I have two incredible, amazing, wonderful, beautiful children, and I would not trade being their mother for anything in the world, no matter what.
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