Mama has missed this post by one day...my bad! Olivia Giuliana all 20lbs and almost 30 inches of her continues to be the light of our lives. These days she is going around saying Mama and Mommmmm to her hearts content, terrorizing anything or anyone she can in her walker and showing a little bit of interest of actually being on her tummy to scoot around.
She is eating little bits of food off anyone's plate, disliking anything sour but tolerating lots of different textures. We still have early intervention physical therapy coming once a week and Olivia continues to warm up to Miss Sue a little bit more each week. Speech is a little delayed but like everything else the little spitfire is making up strides every day.
I on the other hand have the opportunity to do something that I always wondered about after the HLHS diagnosis and thats planning Olivia's first birthday. Six babies passed away this past week and with each baby that leaves us we are reminded even more how precious life is. A baby is a miracle and one that struggles to take its first breath even a little moreso miraculous.
Happy 10 Months Olivia! Dont worry when youre reading this down the road....your birthday gift was some new clothes because you need size 18 months!
All my love,
Mommy
Cinder-Livvy
Friday, January 28, 2011
Wednesday, January 26, 2011
One Small Word, One Giant Step
"Mama" - that's what Miss Olivia busted out during her PT session on Monday afternoon. I had really been having a day, sadness of all the babies struggling and stress at work and there goes Olivia talking out of the blue. I asked the PT if she heard it too, she did and then we spent most of the rest of the session trying to coax it out of her again to no avail.
Later while I was cooking dinner she was buzzing around in her walker and said "Mama/Mommmm" multiple times as she loitering around the kitchen underfoot. I would point to her and say "Olivia" to which receives big smiles and claps, then I would point to me and say "Mama" so she could make the correlation. I'm not sure she quite gets it but seeing how excited I got as she said it made her happy so there were more smiles and claps.
Since then, she's saying it a lot, throughout the day for whatever reason. What Nonna noted in the last day or so is that she's using "Mommm" when she gets overly frustrated or annoyed about something! Greattttttt, just how I want her to associate me. Nah, I'm not really bothered by it, this is huge for Olivia. Throughout all of her assessments and PT, she's still developing the slowest verbally. It could definitely be a case similar to her Tia Linda, obvserving everything and saying little until one day she starts up and NEVER STOPS. For now we are relishing in the moment that Olivia's taken another step towards communicating with us and that's a blessing in itself.
Later while I was cooking dinner she was buzzing around in her walker and said "Mama/Mommmm" multiple times as she loitering around the kitchen underfoot. I would point to her and say "Olivia" to which receives big smiles and claps, then I would point to me and say "Mama" so she could make the correlation. I'm not sure she quite gets it but seeing how excited I got as she said it made her happy so there were more smiles and claps.
Since then, she's saying it a lot, throughout the day for whatever reason. What Nonna noted in the last day or so is that she's using "Mommm" when she gets overly frustrated or annoyed about something! Greattttttt, just how I want her to associate me. Nah, I'm not really bothered by it, this is huge for Olivia. Throughout all of her assessments and PT, she's still developing the slowest verbally. It could definitely be a case similar to her Tia Linda, obvserving everything and saying little until one day she starts up and NEVER STOPS. For now we are relishing in the moment that Olivia's taken another step towards communicating with us and that's a blessing in itself.
Tuesday, January 25, 2011
Sweet Dreams Wyatt
Wyatt Greeno earned his angel wings tonight after a brave 6 month battle against HLHS. Please keep him and the other little CHD angels that earned their wings this week in your thoughts and prayers. Pray that their parents find some comfort in their time of loss and pain. My heart is broken for Wyatt's parents, Jillian and Lucas.
Monday, January 24, 2011
Changes on a Dime
I never quite understood the saying that something could change on a dime, yet here I am using that exact phrase. Friday/Saturday my mind was in birthday party planning mode. Yesterday we were rooting on our Bears against the Packers - to no avail.
Throughout the weekend I've been following the progress of one heart buddy who's been really struggling after his Glenn and this morning I read of two new angel babies. My mood has indeed changed on a dime. All weekend, I felt so excited and thrilled to be planning Olivia's first birthday and this morning I want to throw all of it to the side and hold her tight until she gets tired of me which these days is a few minutes or less.
I don't ask why these things happen, I know that their little bodies have endured more than most of us ever will in a lifetime, but it doesn't make it easier. I've heard from parents that have lost their babies that being told they're in a better place without suffering doesn't bring them much comfort. I get that, you had a child and now your child is no longer here. No amount of words, hugs, support can ever right that wrong.
There are names like widow and widower for those that lose husbands and wives but there are no titles for a parent that loses a child. I think that's because it's such a cruel fate that it would do no justice to try to give that a name. I am thinking of all those families today that have lost their little ones or dealing with ongoing struggles in the hospital. I want you to know that I think of you daily, but today it's going to be hard to focus.
Throughout the weekend I've been following the progress of one heart buddy who's been really struggling after his Glenn and this morning I read of two new angel babies. My mood has indeed changed on a dime. All weekend, I felt so excited and thrilled to be planning Olivia's first birthday and this morning I want to throw all of it to the side and hold her tight until she gets tired of me which these days is a few minutes or less.
I don't ask why these things happen, I know that their little bodies have endured more than most of us ever will in a lifetime, but it doesn't make it easier. I've heard from parents that have lost their babies that being told they're in a better place without suffering doesn't bring them much comfort. I get that, you had a child and now your child is no longer here. No amount of words, hugs, support can ever right that wrong.
There are names like widow and widower for those that lose husbands and wives but there are no titles for a parent that loses a child. I think that's because it's such a cruel fate that it would do no justice to try to give that a name. I am thinking of all those families today that have lost their little ones or dealing with ongoing struggles in the hospital. I want you to know that I think of you daily, but today it's going to be hard to focus.
Friday, January 21, 2011
First Birthday Fiesta
That's right everyone! It's almost that time to start planning Olivia's first birthday. Just a really quick question for all you out there...what sites do you use for personalized invitations and other party stuff? My intent behind having a big shindig is to really thank everyone for all the support they've given us for the past year. So I'm expecting that we're going to invite the entire extended family and all our friends that have been there through thick and thin.
Food - I'm planning on asking one of my cousins to cater most of the food, he makes amazing Mexican food and then I figured that Nonno and I will be able to make some italian faves as well. That'll cover at least half of Olivia's ethnic background and satisfy almost everyone's palate.
Any ideas or suggestions are really appreciated!
Food - I'm planning on asking one of my cousins to cater most of the food, he makes amazing Mexican food and then I figured that Nonno and I will be able to make some italian faves as well. That'll cover at least half of Olivia's ethnic background and satisfy almost everyone's palate.
Any ideas or suggestions are really appreciated!
Monday, January 17, 2011
Questions, questions and more questions
I'm in a bit of a philosophical mood today, so if you want to stop reading now, I'm cool with that - I won't take offense.
I think that I have the makings of endless questions in my future. I anticipate having to answer "why is the sky blue?" and all the other endless questions that children wonder aloud to their parents or grownups; sometimes having to consult an encyclepedia or internet to answer. I can just tell by Olivia's face that she's going to be full of questions as she's taking everything about life in. There's two that I anticipate which will not be easy to answer - at least not on the surface. The first being why her heart is different from a lot of other people. While I know why it is different from others, it doesn't really explain why Olivia's heart is different and others aren't. So I'm trying to brainstorm ahead and think of things to really explain as logically as possible - have I said lately that I'm a planner? I didn't really get very far other than being absolutely convinced that her heart makes her and us who we are.
The second - "Mommy how come you always tell me you love me?". I've thought about this one long and hard, it's so much more than "Because Olivia, I do love you more than there are stars in the sky". While I think it's super important to tell those close to you that you love them and value them, I think too often people get stuck in a rut and go through the motions. Actions do speak louder than words and I want her to know that she can count on all those around her who love her and care for her by us showing it daily. In my opinion if you love someone, you love them as they are. Sure, you may want a few things to go differently, but overall you're going to take them as they are; flaws and all.
I want her to know that love isn't about being the most beautiful (although of course I think she is!) or the best; but it's about bringing out the best in one another regardless of the nature of the relationship. It's the friends and family that will call you out on your junk when you need it and the ones that will wipe away the tears on the worst of days or times. It's easy to celebrate and be there for one another when times are good and people are at their happiest - it's who's going to be there when you need it that shows love. So while I'll continue to tell her daily how much I love her, I hope she doesn't have any questions about it by my actions as well. I think I'm going to go home and start reading Curious George to her tonight since she already has me really thinking.
I think that I have the makings of endless questions in my future. I anticipate having to answer "why is the sky blue?" and all the other endless questions that children wonder aloud to their parents or grownups; sometimes having to consult an encyclepedia or internet to answer. I can just tell by Olivia's face that she's going to be full of questions as she's taking everything about life in. There's two that I anticipate which will not be easy to answer - at least not on the surface. The first being why her heart is different from a lot of other people. While I know why it is different from others, it doesn't really explain why Olivia's heart is different and others aren't. So I'm trying to brainstorm ahead and think of things to really explain as logically as possible - have I said lately that I'm a planner? I didn't really get very far other than being absolutely convinced that her heart makes her and us who we are.
The second - "Mommy how come you always tell me you love me?". I've thought about this one long and hard, it's so much more than "Because Olivia, I do love you more than there are stars in the sky". While I think it's super important to tell those close to you that you love them and value them, I think too often people get stuck in a rut and go through the motions. Actions do speak louder than words and I want her to know that she can count on all those around her who love her and care for her by us showing it daily. In my opinion if you love someone, you love them as they are. Sure, you may want a few things to go differently, but overall you're going to take them as they are; flaws and all.
I want her to know that love isn't about being the most beautiful (although of course I think she is!) or the best; but it's about bringing out the best in one another regardless of the nature of the relationship. It's the friends and family that will call you out on your junk when you need it and the ones that will wipe away the tears on the worst of days or times. It's easy to celebrate and be there for one another when times are good and people are at their happiest - it's who's going to be there when you need it that shows love. So while I'll continue to tell her daily how much I love her, I hope she doesn't have any questions about it by my actions as well. I think I'm going to go home and start reading Curious George to her tonight since she already has me really thinking.
Friday, January 14, 2011
Why Not Us?
I'm in Las Vegas on business this week and catching up with vendors who missed me at this show last year because I was already too pregnant to travel at that point. It's been nice catching up and seeing everyone again. In the natural course of conversation people ask about Olivia. Some know a little bit about her HLHS, while others didn't know anything. I've been explaining it a few times over the last day and am still a little taken aback by the sympathy that people want to extend to me. They're sorry that this happened to us and can't believe what a rough road we've had.
I'm not insulted, I'm appreciative of their good intentions, but I sit and say "why not us?". We are a stable loving family with health insurance and extended family and friends all around ready to pitch in at a moment's need. I know things could be different, I know the Fontan may bring a whole host of complications that we haven't yet faced in either of the prior surgeries. We're aware that life may not always be this blissful with Olivia and right now we're as okay with that as we can be. That's not to say that if things go downhill in the future that we wouldn't struggle with that or mourn the life that we have now; but we know it's a possibility.
I don't want people to pity Olivia because of her HLHS, am I glad she has it? No - but I know it makes her the sweet beautiful baby that I know and love, so I wouldn't undo it either. I wish there was no such thing as cancers or CHD's or anything that causes anyone pain, discomfort, suffering or untimely deaths - adults and children alike. She has brought so much good to our hearts that I don't see how anyone should feel sorry for us, we are fortunate to be where we are today. So why not us?
I'm not insulted, I'm appreciative of their good intentions, but I sit and say "why not us?". We are a stable loving family with health insurance and extended family and friends all around ready to pitch in at a moment's need. I know things could be different, I know the Fontan may bring a whole host of complications that we haven't yet faced in either of the prior surgeries. We're aware that life may not always be this blissful with Olivia and right now we're as okay with that as we can be. That's not to say that if things go downhill in the future that we wouldn't struggle with that or mourn the life that we have now; but we know it's a possibility.
I don't want people to pity Olivia because of her HLHS, am I glad she has it? No - but I know it makes her the sweet beautiful baby that I know and love, so I wouldn't undo it either. I wish there was no such thing as cancers or CHD's or anything that causes anyone pain, discomfort, suffering or untimely deaths - adults and children alike. She has brought so much good to our hearts that I don't see how anyone should feel sorry for us, we are fortunate to be where we are today. So why not us?
Monday, January 10, 2011
Happy Birthday Seester
24 years ago yesterday Linda made her way into this world. In about the only totally planned thing in her life, she arrived via a planned c-section and my days of being an only child were gone after a good four and half year run. I remember that morning sitting at my grandmas house waiting for the phone call to let me know if I had a little brother or sister. My dad and uncle picked me up that night and we went to the hospital to go visit both her and mom in the hospital during a really bad snowstorm. I could hardly wait the next few days for her to come home so I could get my grubby little hands on that little "doll" telling everyone at preschool that I had a baby sister and her name was Linda. There's a picture of that first day when she came home to capture the moment me in the couch legs sticking out in front of me rocking my Super Bowl Champs Bear t-shirt, jeans and my all time fave jelly sandals over white gym socks.
The enthusiasm for that baby sister lasted a few weeks and then after that I think it kind of wore me down. She was the most easy going baby that ever was while I had been the one to keep my parents up for the first year with colic. She didn't have many needs, letting me do most of her talking until she was about two and a half. Linda's always been the yin to my yang which while refreshing to our parents on occasion gave way to major differences in opinions starting at the time I hit about 8 and lasting until I was at least 21 or 22. Sadly there were lots of missed sisterly bonding moments that I let get past us being the older sister. Now that she's living in Paris full time we communicate mostly via the internet, but frequently so we know what's going on in each other's lives and of course so she can have her Olivia updates.
While we still have our differences in approaches to living life, I think we're both comfortable with where we're at and able to enjoy the time that we do spend together. We also do have a number of similarities particulary where they apply to a working woman and the fact that we expect to be equal partners within our respective relationships. Over time I would expect that the similarities become even more frequent and hopefully she'll be living stateside again before I'm old and gray. As for today, we're content to skype and gchat up a storm to stay in touch. I do miss her daily and value her opinion even if she is the younger more inexperienced sister! (I'm sure shaking her head right now at that). So with that last parting bit, Happy Birthday Linda and know that I'm very proud of you, love you dearly (even if affection makes you uncomfortable), and couldn't ask for a better younger sister. Are you sufficiently embarassed now? I could have had everyone sing to you at lunch on Saturday but I didn't want a repeat of your 5th birthday where you burst into tears at Chuckie Cheese.
Love you
The enthusiasm for that baby sister lasted a few weeks and then after that I think it kind of wore me down. She was the most easy going baby that ever was while I had been the one to keep my parents up for the first year with colic. She didn't have many needs, letting me do most of her talking until she was about two and a half. Linda's always been the yin to my yang which while refreshing to our parents on occasion gave way to major differences in opinions starting at the time I hit about 8 and lasting until I was at least 21 or 22. Sadly there were lots of missed sisterly bonding moments that I let get past us being the older sister. Now that she's living in Paris full time we communicate mostly via the internet, but frequently so we know what's going on in each other's lives and of course so she can have her Olivia updates.
While we still have our differences in approaches to living life, I think we're both comfortable with where we're at and able to enjoy the time that we do spend together. We also do have a number of similarities particulary where they apply to a working woman and the fact that we expect to be equal partners within our respective relationships. Over time I would expect that the similarities become even more frequent and hopefully she'll be living stateside again before I'm old and gray. As for today, we're content to skype and gchat up a storm to stay in touch. I do miss her daily and value her opinion even if she is the younger more inexperienced sister! (I'm sure shaking her head right now at that). So with that last parting bit, Happy Birthday Linda and know that I'm very proud of you, love you dearly (even if affection makes you uncomfortable), and couldn't ask for a better younger sister. Are you sufficiently embarassed now? I could have had everyone sing to you at lunch on Saturday but I didn't want a repeat of your 5th birthday where you burst into tears at Chuckie Cheese.
Love you
Friday, January 7, 2011
1/6 Cardiology Appointment
Good morning!
Not just in the greeting but in the fact that it is indeed a great morning. Yesterday Olivia had her first cardiology appointment in 3 months. We waited FORever, but that turned out to be all right because as we waited to be checked in and seen by the staff we brought in all our donations for the Heart Clinic and PSHU while we were waiting to kill time. There was a baby and toddler both waiting for their appointments when we walked in and the little toddler was having an utter meltdown because he skipped his afternoon nap and the staff was running late. I can totally sympathize with his mother as she was trying to calm him down enough for the nurse to get a good BP and then echo images. I was able to reach into the two wagons of stuff that we brought for the clinic and offer him a few new Dr. Seuss books for his mom to read while they waited some more, and you know what? He stopped crying, thanked me for the books and went in for his appointment. I felt so good that all the books and toys that we collected are going to go to comfort these babies and kids when they're scared or tired of waiting - which we all know happens A LOT.
When we took our wagon full of Boppys and Boppy covers up to the PSHU along with blankets, hats, headbands, socks, and stuffed animals Dr. Ilbawi and Dr. VanBergen happened to come up to do a check on their patients. It was so nice to see them, but apparently it had been a tough week for the staff because they were really really happy to see Olivia with her rosy chubby cheeks. In fact, so much so that Dr. Ilbawi sort of took her out of our arms to just love on her a bit. Unfortunately, Olivia didn't sense as much of a connection to him as he did to her. Then, the nurse manager showed them all the items that we were able to donate with our friends and family's help and Dr. Ilbawi turned to thank us. I've had a few surreal moments during this whole heart journey thus far, but definitely Dr. Ilbawi thanking us for something like donating those items to the PSHU is pretty high up there. I mean, he had his hands on our daughter's heart and is one of the only reasons that she is here with us today and he's thanking us? I am still trying to wrap my head around that, but am so pleased that the donations will go to good use in the Heart Clinic and PSHU.
As for Olivia, we finally started seeing staff about 1 1/2 hours after our original appointment time - hence why I'm a crazy woman always trying to book the first appointment of the day! Sats were 86-88, not too shabby, BP was good, systolic was a little high but not of concern and probably because she was trying to squirm away from the cuff; lung sounds were nice and clear and of course her overall color is PINK! Finally we had the dreaded echo, there was talk of us putting it off until the next visit since she looked so good but Dr. Husayni said we needed to get one done since it had been 3 months. Olivia started off all right and played with some rings and then the ultrasound cord, but as the tech needed to get towards her aortic arch she lost her marbles. We had to stop the echo and she passed out, poor little thing, then the tech finished up and Dr. Husayni reviewed all the images. Verdict: Tricuspid valve looks great with leakage within normal ranges, there is a little bit of thickening but all within normal ranges post-Glenn, and the left Pulmonary Artery (PA) that measured smaller pre-Glenn cath is still measuring smaller but doesn't require any intervention at this time and possibly not at all pre-Fontan.
As for that Fontan? They're sticking to their guns, 2 years of age for Olivia. Assuming that the Left PA doesn't start narrowing and affecting her sats or anything, she will go in for a cath a few months prior to the Fontan to get pressure gradients and lay out the surgical game plan. Right now that means we virtually have about 15 months without any invasive medical intervention ahead of us for Miss Olivia to continue flourishing. Absolutely amazing...
Not just in the greeting but in the fact that it is indeed a great morning. Yesterday Olivia had her first cardiology appointment in 3 months. We waited FORever, but that turned out to be all right because as we waited to be checked in and seen by the staff we brought in all our donations for the Heart Clinic and PSHU while we were waiting to kill time. There was a baby and toddler both waiting for their appointments when we walked in and the little toddler was having an utter meltdown because he skipped his afternoon nap and the staff was running late. I can totally sympathize with his mother as she was trying to calm him down enough for the nurse to get a good BP and then echo images. I was able to reach into the two wagons of stuff that we brought for the clinic and offer him a few new Dr. Seuss books for his mom to read while they waited some more, and you know what? He stopped crying, thanked me for the books and went in for his appointment. I felt so good that all the books and toys that we collected are going to go to comfort these babies and kids when they're scared or tired of waiting - which we all know happens A LOT.
When we took our wagon full of Boppys and Boppy covers up to the PSHU along with blankets, hats, headbands, socks, and stuffed animals Dr. Ilbawi and Dr. VanBergen happened to come up to do a check on their patients. It was so nice to see them, but apparently it had been a tough week for the staff because they were really really happy to see Olivia with her rosy chubby cheeks. In fact, so much so that Dr. Ilbawi sort of took her out of our arms to just love on her a bit. Unfortunately, Olivia didn't sense as much of a connection to him as he did to her. Then, the nurse manager showed them all the items that we were able to donate with our friends and family's help and Dr. Ilbawi turned to thank us. I've had a few surreal moments during this whole heart journey thus far, but definitely Dr. Ilbawi thanking us for something like donating those items to the PSHU is pretty high up there. I mean, he had his hands on our daughter's heart and is one of the only reasons that she is here with us today and he's thanking us? I am still trying to wrap my head around that, but am so pleased that the donations will go to good use in the Heart Clinic and PSHU.
As for Olivia, we finally started seeing staff about 1 1/2 hours after our original appointment time - hence why I'm a crazy woman always trying to book the first appointment of the day! Sats were 86-88, not too shabby, BP was good, systolic was a little high but not of concern and probably because she was trying to squirm away from the cuff; lung sounds were nice and clear and of course her overall color is PINK! Finally we had the dreaded echo, there was talk of us putting it off until the next visit since she looked so good but Dr. Husayni said we needed to get one done since it had been 3 months. Olivia started off all right and played with some rings and then the ultrasound cord, but as the tech needed to get towards her aortic arch she lost her marbles. We had to stop the echo and she passed out, poor little thing, then the tech finished up and Dr. Husayni reviewed all the images. Verdict: Tricuspid valve looks great with leakage within normal ranges, there is a little bit of thickening but all within normal ranges post-Glenn, and the left Pulmonary Artery (PA) that measured smaller pre-Glenn cath is still measuring smaller but doesn't require any intervention at this time and possibly not at all pre-Fontan.
As for that Fontan? They're sticking to their guns, 2 years of age for Olivia. Assuming that the Left PA doesn't start narrowing and affecting her sats or anything, she will go in for a cath a few months prior to the Fontan to get pressure gradients and lay out the surgical game plan. Right now that means we virtually have about 15 months without any invasive medical intervention ahead of us for Miss Olivia to continue flourishing. Absolutely amazing...
Tuesday, January 4, 2011
What Olivia's Up to These Days
 |
| Beating up Poor Fievel |
 |
| Starting to Enjoy the Pack & Play |
 |
| Loving the Exer Saucer |
 |
| Eyeing all the Christmas Loot |
 |
| Busted doing something naughty |
 |
| Mommy why would you think I'm up to no good? |
 |
| Have I mentioned how much I love your necklace Mommy? |
 |
| Yay Olivia! She claps everytime she hears that |
 |
| Rooting on the Bears on Daddy-Daughter Day |
 |
| Oh no Bears lose to the PACKERS :( |
Monday, January 3, 2011
Farewell 2010 - Hello 2011
Sorry for the lack of posts late. Work and life have just been getting in the way! I'll also apologize for the length of this post now.
First and foremost - Happy New Year! (albeit a little belated)
I hope that everyone had a safe and happy new year experience. Our new year's eve was unlike any other that we have ever experienced. Miss Olivia was a bit of a CRANK for most of the evening so by the time she went to sleep at 9:30, Mommy followed shortly thereafter. Lights were out and we were all asleep as midnight came and went.
I have to admit a few days later that I'm sad and at the same time relieved that 2010 is over. Goodness gracious did we cram a lot of living into those 365 days. 2010 will definitely go down as one of the best years of my/our life and that makes me a little sad to let it go. Although, I am breathing a little sigh of relief that it's over as well. I am hoping and praying that 2011 is a little less invasive in the way of medical treatment for Olivia. She will have at least one heart cath and possibly even two with the potential of the Fontan, but her cardiology team really seems set on the 2 year old mark for that which puts us in early 2012 and that could be "nice" to plan around too. (as nice as planning for pediatric open heart surgery would ever be).
Over the course of the last 12 months we have made so many friends and extended family members within the heart community and that was one of the highlights of 2010. We all have so many hopes and fears that only a parent in the same circumstances can grasp that it always gives me comfort to sound off another parent walking a similar path as ours. While the benefits FAR outweigh the negatives, the biggest negative for me is all the deaths. I know of at least sixteen little ones that passed away in 2010 by way of following their blogs or from another heart family. That doesn't even begin to touch upon the other families out their whose losses I was not aware of as they occured. Sixteen children, sixteen families, sixteen mothers out there burying their children before their time.
I have never shied away from the possibility that it could one day be a fate shared by us regardless of how well Olivia is doing in this present moment. Somehow I just thought that as I continued to face the losses as they have grown in numbers that maybe I would become a little numb to them - but I sit here and wait for that numbness to arrive. A family had a loss last week and still the tears sting when I think of the growing list of names. I know one fear of any family that has experienced a loss is that life will move on, that people who were originally sympathetic will eventually forget the hurt and the wounds and move one forgetting their lost loved one. I for one can honestly acknowledge that not a day goes by that I don't think about all those little and big ones lost by all our heart families. To know that the list will continue to grow in 2011 definitely made me dread the ringing in of the new year, but Olivia is here and still thriving and I live in those moments like they could be gone tomorrow because that's the truth.
2010 taught me a lot about myself, some things weren't necessarily personality traits that I liked about myself when I thought long and hard about it so I've vowed to change. It was also a landmark year for that old addage of "your true friends" and that applies to family as well. I think that some people have this preconceived notion that being family means that you're always going to be there for one another and that's just not true. I know so many parents along this journey that were really left sort of blowing in the wind to fend for themselves during the toughest and most stressful time of their lives. Our family has really gone above and beyond for us and that applies to extended family that's out of state as well. They have really rallied for us and rooted us on when we needed it most and it's not something I'll ever forget.
As for being the parent and teaching children about life and what's important; I have to say Olivia has been the teacher and I've been the student. When I look at things from her perspective my values are starting to change. What I want out of life and who I want to be is evolving. I know this is something that happens with age but it's been a particularly adventurous twelve months so I think the changes within me have been more dramatic as an effect of the year. I'm always asking myself am I the person that I want her to grow up to take after? Am I leading the life that I want her to follow? Some days I'm not sure, other days it's an easy answer. I'm looking forward to more of 2011 to see how things go and of course more time with our miracle baby.
If this post gives off the tone of melancholy don't be alarmed, I think it's just the weight of recalling the entire year in one sitting. I'll give a dedicated Olivia update tomorrow complete with more pictures since the reindeer baby was a crowd pleaser.
Much Love,
Lisa
First and foremost - Happy New Year! (albeit a little belated)
I hope that everyone had a safe and happy new year experience. Our new year's eve was unlike any other that we have ever experienced. Miss Olivia was a bit of a CRANK for most of the evening so by the time she went to sleep at 9:30, Mommy followed shortly thereafter. Lights were out and we were all asleep as midnight came and went.
I have to admit a few days later that I'm sad and at the same time relieved that 2010 is over. Goodness gracious did we cram a lot of living into those 365 days. 2010 will definitely go down as one of the best years of my/our life and that makes me a little sad to let it go. Although, I am breathing a little sigh of relief that it's over as well. I am hoping and praying that 2011 is a little less invasive in the way of medical treatment for Olivia. She will have at least one heart cath and possibly even two with the potential of the Fontan, but her cardiology team really seems set on the 2 year old mark for that which puts us in early 2012 and that could be "nice" to plan around too. (as nice as planning for pediatric open heart surgery would ever be).
Over the course of the last 12 months we have made so many friends and extended family members within the heart community and that was one of the highlights of 2010. We all have so many hopes and fears that only a parent in the same circumstances can grasp that it always gives me comfort to sound off another parent walking a similar path as ours. While the benefits FAR outweigh the negatives, the biggest negative for me is all the deaths. I know of at least sixteen little ones that passed away in 2010 by way of following their blogs or from another heart family. That doesn't even begin to touch upon the other families out their whose losses I was not aware of as they occured. Sixteen children, sixteen families, sixteen mothers out there burying their children before their time.
I have never shied away from the possibility that it could one day be a fate shared by us regardless of how well Olivia is doing in this present moment. Somehow I just thought that as I continued to face the losses as they have grown in numbers that maybe I would become a little numb to them - but I sit here and wait for that numbness to arrive. A family had a loss last week and still the tears sting when I think of the growing list of names. I know one fear of any family that has experienced a loss is that life will move on, that people who were originally sympathetic will eventually forget the hurt and the wounds and move one forgetting their lost loved one. I for one can honestly acknowledge that not a day goes by that I don't think about all those little and big ones lost by all our heart families. To know that the list will continue to grow in 2011 definitely made me dread the ringing in of the new year, but Olivia is here and still thriving and I live in those moments like they could be gone tomorrow because that's the truth.
2010 taught me a lot about myself, some things weren't necessarily personality traits that I liked about myself when I thought long and hard about it so I've vowed to change. It was also a landmark year for that old addage of "your true friends" and that applies to family as well. I think that some people have this preconceived notion that being family means that you're always going to be there for one another and that's just not true. I know so many parents along this journey that were really left sort of blowing in the wind to fend for themselves during the toughest and most stressful time of their lives. Our family has really gone above and beyond for us and that applies to extended family that's out of state as well. They have really rallied for us and rooted us on when we needed it most and it's not something I'll ever forget.
As for being the parent and teaching children about life and what's important; I have to say Olivia has been the teacher and I've been the student. When I look at things from her perspective my values are starting to change. What I want out of life and who I want to be is evolving. I know this is something that happens with age but it's been a particularly adventurous twelve months so I think the changes within me have been more dramatic as an effect of the year. I'm always asking myself am I the person that I want her to grow up to take after? Am I leading the life that I want her to follow? Some days I'm not sure, other days it's an easy answer. I'm looking forward to more of 2011 to see how things go and of course more time with our miracle baby.
If this post gives off the tone of melancholy don't be alarmed, I think it's just the weight of recalling the entire year in one sitting. I'll give a dedicated Olivia update tomorrow complete with more pictures since the reindeer baby was a crowd pleaser.
Much Love,
Lisa
Subscribe to:
Posts (Atom)