Anderson and Olivia at the Pancake Breakfast!
Playing dress-up with Uncle Chris!
Saturday, March 13, 2010
Olivia
Jeremy baby-sat Lilly this morning while I spent some time with Olivia and it dawned on me that with all the hoopla surrounding Lilly these days that I haven't updated the blog with any news regarding just Olivia. So I wanted take some time to document what my beautiful oldest daughter is up to these days.
Olivia is growing up SO fast that it is scary sometimes. She will turn 3 in April and I cannot believe that it has been 3 years since we were blessed to have her born into our lives. She is quite possibly the easiest, sweetest, and most polite toddler you will ever meet. I never really have to discipline her that much. She has a mind of her own and wants to do everything "by myself." So when I can't let her make such a choice, I often get a tantrum that can be easily dissuaded by sitting her in time out and telling her she needs to stay there until she can tell me why she is sitting in time out and apologize. I have never had to sit her there too long before I hear the sweet sound of "sorry Mommy." Olivia also loves to give hugs and kisses. She tells me often that she loves me, Daddy, and Lilly. She will crack me up sometimes when I tell her that Daddy is coming home and she responds with "I like me some Daddy!" She is highly concerned about Jake, Maggie, and Lilly, and never lets me leave them out. In addition, my nanny told Jeremy on Friday that she has never been around a toddler so polite. Olivia is so appreciative. She often tells me thank you for anything ranging from brushing her hair to fixing her macaroni and cheese to buying her something special at Target. She remembers to say please without being prompted (too much) and she always says "excuse me" after she "toots in her mouth" (no, I didn't teach her that - she came up with it by herself!)
Olivia also loves to help me. I really do rely on her to get me the items I need to change Lilly's diapers, to bring me Lilly's pacifier or percussor, to grab bibs, and even to remind me to remember to purchase something at the grocery or run an errand. She is on top of it and I frankly don't know if I could run the household without her. She knows where everything is and what the routine should be. I really don't know what I did to deserve a toddler so wonderful.
Olivia is very silly, as many toddlers can be. She often talks in her own language, which sounds like nonsense to me, but it clearly has some rhyme and reason because I recognize that she uses the same words for the same items. She has renamed me "Mimi" and often refuses to call me Mommy much to my chagrin. She will call Jake and Maggie by their nicknames - Buddy and Peeps - as well. She likes to tell me that she can do what I can do when she "grows tall." Sometimes though she finds things that she doesn't want to do and will emphatically tell me that she is NOT doing that when she grows up. Olivia loves to run around the room "marching like a dinosaur" or "flying like a butterfly." She has a personality all her own and it is adorable.
I am also constantly amazed at how smart she can be and how little credit I can give her sometimes. Olivia can say her ABCs and knows her letters by sight. She can count to 10 and almost to 20. She knows her shapes and colors. She knows the words to over 20 nursery rhymes and lullabies and LOVES to sing/recite them. She works puzzles like a champ. I actually have difficulty finding puzzles for children her age that challenge her. She has an amazing memory - she asked me today if a little boy was going to meet us that she met over a year and a half ago. She also listens to everything - I have to watch what I say around her because she is a sponge and remembers what I say and will regurgitate it to me at the oddest times (dangerous, I know). She knows where everything in the house is located, what I need to get at the grocery store, and when it is time to feed/change/bathe Lilly. I swear she could run this house and care for Lilly without any help from me. You can't get anything by her - if I cough without covering my mouth, she is on me. She never lets anyone forget to wash her hands after she uses the bathroom. She is one of the most fastidious children I have ever met (does this surprise anyone that she is my daughter?).
She is also incredibly adaptable. While in retrospect I now recognize the signs of stress from her that she has exhibited over the past few months that I didn't connect as signs of stress in the past, I realize that she has accepted all the changes in her life so well. Nothing about Lilly's therapy or medicine scares her. She accepts her role as big sister without question. She adapted to the nanny situation with nary a peep. She is doing much better than me!
In short, Olivia is a beautiful, happy, well-adjusted toddler. Her Mommy and Daddy may be having difficulty adapting to the changes in life, but she isn't.
Friday, March 12, 2010
Mother Theresa? I Think Not.
I get incredibly frustrated these days. Really frustrated. To the point of tears. I returned to work two weeks ago. I knew it was going to be hard. I just didn't realize how hard. I feel like I run, non-stop, from 5:00 in the morning until 10:00 at night, and then an extra hour or so at night feeding Lilly. My day consists of an alarm going off at 5:00, working out, feeding the dogs, showering, feeding Lilly and Olivia, and sometimes dressing them, before the nanny shows up at 8, at which point I shove an egg with cheese on a tortilla down my throat and run out the door. Then it is off to work from 8 to 5, where I avoid a lunch break because I will never make my billable hour requirement if I don't. I leave work shortly before 5 so I can fight traffic to make it home by 5:30. When I hit the door at 5:30, I hit the ground running - we have dinner, baths, therapy, etc. Then, if I am lucky to get the girls to bed by 8:30, I still have bottles to wash and make, bills to pay, dogs to feed, a budget to balance - you name it. By 10:00, I am dead on my feet.
I knew having two kids would be much harder than having one. I knew it would be difficult. I knew it would be particularly difficult doing it by myself while Jeremy traveled. But you can know something will be difficult and not really *know* how difficult it will be. Add the stress of my job and Lilly's diagnosis, and you certainly have a recipe for disaster. I won't lie - there are nights where I can barely hold back tears. Nights where I snap at Olivia for no good reason at all. Nights where I cry myself to sleep from sheer exhaustion. Nights where I want to just walk out the door and let someone else, anyone else, deal with it.
I get particularly frustrated because I feel like I am losing valuable bonding time with Lilly during a time in her life that I know, without a doubt since she is my second child, that is so fleeting. My maternity leave was not what I had hoped it would be. With Lilly's diagnosis, I felt robbed of much of my bonding time with my baby. Now that I am back at work, I feel even more robbed of my time with her. We are still working through her reflux and malabsorption issues. I document every day - her feeding, potty, and sleep schedule. But I have to rely so heavily on my nanny for how she is progressing from day to day. It, in a word, sucks. At night, I am running around like a chicken with my head cut off, trying to juggle both girls and just fit in the basics - feeding, therapy, bath, bedtime. I never get time to just cuddle with Lilly. I remember when Olivia was a baby I would rock her to sleep every night. I would sing her lullabies and just hold her. It was our time together, a time to refocus after a busy day on what truly mattered. With Lilly, I do my best to juggle her while she screams from her bellyaches and read Olivia a book (to Olivia's credit, while she doesn't understand Mommy's need to take care of Lilly without her interference, she does sit quietly and rarely complains about Lilly's fussing while we read). There is just no time for me and Lilly and I hate it.
Not only do I never have time to just cuddle with Lilly, but my time with Olivia is often strained as well. Since she is older and more demanding on her wants/needs, I do manage to spend some time with her - at least we can talk over dinner and I still read her books. But one on one time is few and far between these days.
When Jeremy is home, things are not as difficult. Two parents + two kids = a formula that works well. But that isn't always an option and when it isn't an option, I struggle. I often ask myself - when do I get to spend time just enjoying my baby? That usually raises questions of when do I get to spend some time with my husband? What about Olivia? Oh, and last, but certainly not least, when do I get some time for myself? I just can't do it all. A friend told me that I will always feel like I am falling short, but I am not. I know she is right, but it certainly feels like I can't do anything right these days and everything is falling short.
A lot of people have complimented me with how I am dealing with everything that has come our way in the past 3 months. About my "strength" and my "courage." About how well I am coping. I have a secret to tell you - you are fooled. I am not strong, I am not courageous, and I am not coping very well. I am a big fat fraud and I feel so guilty about it. But that same friend who told me that I am not falling short also said something else that stuck with me. She said that when it comes to dealing with the challenges of raising children, particularly a child with special needs, on top of a demanding career, regardless of the challenges that you have to learn to navigate from day to day, you just keep grinding it out "not because you are God's chosen one or because you are some Mother Theresa. You do it because you love your kid and there isn't anything else that you can do. And that is all that is required.'' It is for that reason that when I feel that urge to walk out the door, scream, and cry, I take a deep breath and grind it out another day.
I knew having two kids would be much harder than having one. I knew it would be difficult. I knew it would be particularly difficult doing it by myself while Jeremy traveled. But you can know something will be difficult and not really *know* how difficult it will be. Add the stress of my job and Lilly's diagnosis, and you certainly have a recipe for disaster. I won't lie - there are nights where I can barely hold back tears. Nights where I snap at Olivia for no good reason at all. Nights where I cry myself to sleep from sheer exhaustion. Nights where I want to just walk out the door and let someone else, anyone else, deal with it.
I get particularly frustrated because I feel like I am losing valuable bonding time with Lilly during a time in her life that I know, without a doubt since she is my second child, that is so fleeting. My maternity leave was not what I had hoped it would be. With Lilly's diagnosis, I felt robbed of much of my bonding time with my baby. Now that I am back at work, I feel even more robbed of my time with her. We are still working through her reflux and malabsorption issues. I document every day - her feeding, potty, and sleep schedule. But I have to rely so heavily on my nanny for how she is progressing from day to day. It, in a word, sucks. At night, I am running around like a chicken with my head cut off, trying to juggle both girls and just fit in the basics - feeding, therapy, bath, bedtime. I never get time to just cuddle with Lilly. I remember when Olivia was a baby I would rock her to sleep every night. I would sing her lullabies and just hold her. It was our time together, a time to refocus after a busy day on what truly mattered. With Lilly, I do my best to juggle her while she screams from her bellyaches and read Olivia a book (to Olivia's credit, while she doesn't understand Mommy's need to take care of Lilly without her interference, she does sit quietly and rarely complains about Lilly's fussing while we read). There is just no time for me and Lilly and I hate it.
Not only do I never have time to just cuddle with Lilly, but my time with Olivia is often strained as well. Since she is older and more demanding on her wants/needs, I do manage to spend some time with her - at least we can talk over dinner and I still read her books. But one on one time is few and far between these days.
When Jeremy is home, things are not as difficult. Two parents + two kids = a formula that works well. But that isn't always an option and when it isn't an option, I struggle. I often ask myself - when do I get to spend time just enjoying my baby? That usually raises questions of when do I get to spend some time with my husband? What about Olivia? Oh, and last, but certainly not least, when do I get some time for myself? I just can't do it all. A friend told me that I will always feel like I am falling short, but I am not. I know she is right, but it certainly feels like I can't do anything right these days and everything is falling short.
A lot of people have complimented me with how I am dealing with everything that has come our way in the past 3 months. About my "strength" and my "courage." About how well I am coping. I have a secret to tell you - you are fooled. I am not strong, I am not courageous, and I am not coping very well. I am a big fat fraud and I feel so guilty about it. But that same friend who told me that I am not falling short also said something else that stuck with me. She said that when it comes to dealing with the challenges of raising children, particularly a child with special needs, on top of a demanding career, regardless of the challenges that you have to learn to navigate from day to day, you just keep grinding it out "not because you are God's chosen one or because you are some Mother Theresa. You do it because you love your kid and there isn't anything else that you can do. And that is all that is required.'' It is for that reason that when I feel that urge to walk out the door, scream, and cry, I take a deep breath and grind it out another day.
Wednesday, March 03, 2010
Reflux, Enzymes, and "Team Lilly"
We had our second visit with Dr. Kanga today and I think, all things considered, it went well. At first, I was very concerned. When we weighed Lilly she only weighed 9 lbs. 2 oz., which is exactly what she weighed a week and a half ago. I was devastated and thought I would break down in tears at that very moment. But Dr. Kanga didn't seem terribly concerned. He said that she has actually gained weight well since her last visit and explained the discrepency by the difference in scales. That was comforting. He has advised us to keep her on the same amount of enzymes (2 at this time) and has (FINALLY) prescribed us Zantac for her reflux (can I say, "thank God" enough??) I really feel strongly that is one of her problems right now. Poor Lilly spends her days soaked from spitting up constantly. She cannot lay flat and she often gets choked on her spit up. For a while, I was terrified it was mucus from CF, but I realized after studying up a little more that it is more likely to be reflux. I think after discussing it with Dr. Kanga and the CF team that they agree, at this point, with that diagnosis as well. He has also suggested we switch to Enfamil AR, if necessary, so if the medicine still doesn't help, then we will try a formula with some rice cereal mixed in to see if that helps. So I am hoping and praying that the Zantac will make a difference. Lilly is a precious little girl when she is happy and comfortable, but reflux and malabsorption issues make her difficult sometimes.
As for respiratory issues, we have none at the moment. I have been very scared that respiratory problems would start early and often. Although no promises have been made, we aren't seeing anything yet. We will do x-rays and cultures at our next visit to find out a little more detail, but until then Dr. Kanga seemed to think her lungs are healthy. We are continuing our chest percussion therapy twice a day and Denesa, our respiratory therapist, has assured us that at this point, it is more preventative and that she is "not that important" (for now). I am praying that she stays "not very important" for a LONG time, but know that the reality is we will need her much more down the road.
We also discussed with Dr. Kanga the problems that result in morbidity in CF patients. While that is a question I dreaded to ask, I felt it necessary. As a lawyer, and as the person I am, I am conditioned to have to know all the angles, all the possibilities. It is the only way I can accept what is going on - ignorance is not bliss to me. The unknown is so much scarier. As I suspected, the real issue is chronic lung damage. So the fight is to keep her lungs as healthy as possible. Dr. Kanga said that even when the pseudonomas (I hope I am spelling that right) appear in her lungs, that is not the beginning of the end - rather, they can be eradicated, although they are likely to reappear again and again. But at least we can, and will, treat it aggressively. I feel as though the healthier I can keep her respiratory system, the better chance she has to live a LONG and healthy life.
As for us, I think we are doing better. Jeremy has done wonderful in accepting the diagnosis - I have struggled much more so with it. Despite knowing, logically, that CF is what we are dealing with, I still wake up some mornings thinking that it was all a bad dream. I still fight the acceptance. But these days I wonder if I will ever truly accept that Lilly has CF. I used to characterize it as denial. But I don't think it is denial any more. I know that she has CF. I know that until a cure is found, she will always have CF. But I think that "fight" in me, that refusal to accept, is actually a refusal to accept that CF will end her life one day. I feel as though a part of me is working towards channeling that anger, that negative energy, into something positive, into the "fight" that I need to wage war against this disease.
So I have been exploring options on how I can empower myself to help my little girl. I have contacted the local chapter of our CF Foundation to find ways to become involved. I have talked to a local person who does fundraising for CF and I am hoping, as things become more routine for us and we are not so overwhelmed, to become actively involved. I am also reading and learning everything I can about CF - the more I know, the better equipped I am to take up the battle. It feels good to be doing something. So don't be surprised if you get an email, letter, voicemail, etc. from me one day asking for support for a CF fundraising event. I have asked many for money before for many other worthy causes - but this one is extra special to me and I am finding myself becoming very passionate about providing researchers the money they need to find the cure.
Along those lines, my beautiful, wonderful, could-not-live-without-them friends have already picked up the gauntlet and started such fundraising efforts. My dinner club girls/sorority sisters have launched "Team Lilly" to help raise money for the local "Great Strides" walk in Lexington. In talking with those familiar with fundraising efforts in Lexington, I have discovered that this walk is not as successful as many other fundraisers, which is disappointing news to hear. I want to change that. So if you have extra time, or any extra money (which I know is hard to come by these days), please consider donating your time and money to "Team Lilly" and finding a cure for CF. You may do so by going to
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6803&idUser=359691
which is my donation page and make a donation. Or you can go to
http://www.cff.org/Great_Strides
and donate to "Team Lilly" as well. Either way it all goes in the same pot. If you have $5 or $500 - it matters not to me - I would deeply appreciate any help you can give us to finding a cure for Lilly.
As for respiratory issues, we have none at the moment. I have been very scared that respiratory problems would start early and often. Although no promises have been made, we aren't seeing anything yet. We will do x-rays and cultures at our next visit to find out a little more detail, but until then Dr. Kanga seemed to think her lungs are healthy. We are continuing our chest percussion therapy twice a day and Denesa, our respiratory therapist, has assured us that at this point, it is more preventative and that she is "not that important" (for now). I am praying that she stays "not very important" for a LONG time, but know that the reality is we will need her much more down the road.
We also discussed with Dr. Kanga the problems that result in morbidity in CF patients. While that is a question I dreaded to ask, I felt it necessary. As a lawyer, and as the person I am, I am conditioned to have to know all the angles, all the possibilities. It is the only way I can accept what is going on - ignorance is not bliss to me. The unknown is so much scarier. As I suspected, the real issue is chronic lung damage. So the fight is to keep her lungs as healthy as possible. Dr. Kanga said that even when the pseudonomas (I hope I am spelling that right) appear in her lungs, that is not the beginning of the end - rather, they can be eradicated, although they are likely to reappear again and again. But at least we can, and will, treat it aggressively. I feel as though the healthier I can keep her respiratory system, the better chance she has to live a LONG and healthy life.
As for us, I think we are doing better. Jeremy has done wonderful in accepting the diagnosis - I have struggled much more so with it. Despite knowing, logically, that CF is what we are dealing with, I still wake up some mornings thinking that it was all a bad dream. I still fight the acceptance. But these days I wonder if I will ever truly accept that Lilly has CF. I used to characterize it as denial. But I don't think it is denial any more. I know that she has CF. I know that until a cure is found, she will always have CF. But I think that "fight" in me, that refusal to accept, is actually a refusal to accept that CF will end her life one day. I feel as though a part of me is working towards channeling that anger, that negative energy, into something positive, into the "fight" that I need to wage war against this disease.
So I have been exploring options on how I can empower myself to help my little girl. I have contacted the local chapter of our CF Foundation to find ways to become involved. I have talked to a local person who does fundraising for CF and I am hoping, as things become more routine for us and we are not so overwhelmed, to become actively involved. I am also reading and learning everything I can about CF - the more I know, the better equipped I am to take up the battle. It feels good to be doing something. So don't be surprised if you get an email, letter, voicemail, etc. from me one day asking for support for a CF fundraising event. I have asked many for money before for many other worthy causes - but this one is extra special to me and I am finding myself becoming very passionate about providing researchers the money they need to find the cure.
Along those lines, my beautiful, wonderful, could-not-live-without-them friends have already picked up the gauntlet and started such fundraising efforts. My dinner club girls/sorority sisters have launched "Team Lilly" to help raise money for the local "Great Strides" walk in Lexington. In talking with those familiar with fundraising efforts in Lexington, I have discovered that this walk is not as successful as many other fundraisers, which is disappointing news to hear. I want to change that. So if you have extra time, or any extra money (which I know is hard to come by these days), please consider donating your time and money to "Team Lilly" and finding a cure for CF. You may do so by going to
http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=6803&idUser=359691
which is my donation page and make a donation. Or you can go to
http://www.cff.org/Great_Strides
and donate to "Team Lilly" as well. Either way it all goes in the same pot. If you have $5 or $500 - it matters not to me - I would deeply appreciate any help you can give us to finding a cure for Lilly.
Life Goes On
I went back to work this week. I would say my return is bittersweet. Many things changed while I was gone for 3 months. We had several persons move on to better opportunities, which changed the dynamic of the office. I am no longer in the hub of activity on my floor - my office is actually pretty quiet now. A large case that I have worked on most of my legal career went to not one, but two trials, since I became pregnant with Lilly, and in many ways, I am now standing on the outside looking in rather than in the midst of the activity. In short, life did not stop. It didn't even slow down. It kept going and it kept going without me.
What is weird is that with the cataclysmic changes at home, I didn't really expect life to go on at work. When I heard Lilly's diagnosis, my world changed forever. I thought the world would stop so I could adjust. So I expected when I returned to work everything would suddenly seem as it was before. I craved that comfortable feeling and was sorely disappointed when I didn't experience it upon my return.
While I had some options to extend my leave, I chose not to take them because I really wanted to find some sort of normalcy again. I knew things would be slightly different with the changes that occurred at the office, but I still felt I would find something that would remind me of what things were like before Lilly's diagnosis. But not so.
The root of the problem is me. Things that were very important to me before, things that I would think were "fun" and "exciting" have lost their lustre. My motivation has taken a beating. I just look at some of the issues that arise in my cases that I will have to deal with over the next few months and think, "what a trivial fight." When I compare them to our battle with cystic fibrosis, I find those fights a nuisance. I am just so exhausted right now - I don't have anything left to give to that fight. My reserves are being exhausted by focusing on Lilly - I just don't think I have anything left. I can't seem to motivate myself and it concerns me. It is important to me that I do my job well. I can't do my job well if I don't care about something as much as my client's care. I don't want to just go through the motions - I want to be passionate about what I do. The loss of that passion is something that I am praying is temporary. I hope I can find it again in the coming days. It is just difficult when I spend most of my days worrying about Lilly.
As for Lilly, she is managing okay. We are struggling to get her on the right dosage of enzymes. We switched from Ultrase to Zenpep and unfortunately she did not take to the Zenpep very well - she went from being fairly comfortable and even sleeping through the night on several occasions to fussy and sleepless. She is getting up again in the middle of the night (lack of sleep is NOT good for my motivation either) and is clearly having some abdominal pain and gas. I suspect she may even have reflux that requires medication. Regardless, I would like to get her enzymes regulated so she is feeling better and we are all happier.
I never mention how Olivia is dealing with things because, frankly, she is dealing quite well. She loves the new nanny. She loves her sister. And she doesn't think anything is out of the ordinary with Lilly's treatments. In fact, I find her several times undressing her baby dolls to their t-shirts and "playing the drums" on her babies "just like Mommy." She will tell me that I played the drums on her when she was a baby and I don't correct her. I want her to feel like this is part of our normal routine. She accepts it as part of our normal routine. I may need to take a lesson from my daughter on acceptance - she doesn't waste time wondering why or crying about it - she just deals with it and for her, life just moves on.
What is weird is that with the cataclysmic changes at home, I didn't really expect life to go on at work. When I heard Lilly's diagnosis, my world changed forever. I thought the world would stop so I could adjust. So I expected when I returned to work everything would suddenly seem as it was before. I craved that comfortable feeling and was sorely disappointed when I didn't experience it upon my return.
While I had some options to extend my leave, I chose not to take them because I really wanted to find some sort of normalcy again. I knew things would be slightly different with the changes that occurred at the office, but I still felt I would find something that would remind me of what things were like before Lilly's diagnosis. But not so.
The root of the problem is me. Things that were very important to me before, things that I would think were "fun" and "exciting" have lost their lustre. My motivation has taken a beating. I just look at some of the issues that arise in my cases that I will have to deal with over the next few months and think, "what a trivial fight." When I compare them to our battle with cystic fibrosis, I find those fights a nuisance. I am just so exhausted right now - I don't have anything left to give to that fight. My reserves are being exhausted by focusing on Lilly - I just don't think I have anything left. I can't seem to motivate myself and it concerns me. It is important to me that I do my job well. I can't do my job well if I don't care about something as much as my client's care. I don't want to just go through the motions - I want to be passionate about what I do. The loss of that passion is something that I am praying is temporary. I hope I can find it again in the coming days. It is just difficult when I spend most of my days worrying about Lilly.
As for Lilly, she is managing okay. We are struggling to get her on the right dosage of enzymes. We switched from Ultrase to Zenpep and unfortunately she did not take to the Zenpep very well - she went from being fairly comfortable and even sleeping through the night on several occasions to fussy and sleepless. She is getting up again in the middle of the night (lack of sleep is NOT good for my motivation either) and is clearly having some abdominal pain and gas. I suspect she may even have reflux that requires medication. Regardless, I would like to get her enzymes regulated so she is feeling better and we are all happier.
I never mention how Olivia is dealing with things because, frankly, she is dealing quite well. She loves the new nanny. She loves her sister. And she doesn't think anything is out of the ordinary with Lilly's treatments. In fact, I find her several times undressing her baby dolls to their t-shirts and "playing the drums" on her babies "just like Mommy." She will tell me that I played the drums on her when she was a baby and I don't correct her. I want her to feel like this is part of our normal routine. She accepts it as part of our normal routine. I may need to take a lesson from my daughter on acceptance - she doesn't waste time wondering why or crying about it - she just deals with it and for her, life just moves on.
Monday, March 01, 2010
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