I feel so tightly wrapped the last few days...correction, the last few nights. The days have been fine. I've been so incredibly busy. Doing what I need to do to get Ruby through the day. Having fun with her and helping her to advance in all those areas where she needs it. But at night I have been stuck in high gear. Like I can't let go of the therapies and the feeding sessions and the play and the learning and the teaching and I just can't relax.
It's exhausting. I'm exhausted. I knew being a mother would be tiring but, well...not this much. I feel like I need a break from this routine. Wake up, cuddle with Rubes for 30 min. Then it's go, go, go. Shower and dress Rubes and myself. Mix up formula and draw up meds. Deal with my constantly messy house. Therapy of some sort for Ruby. Water bolus. Play and read books. Lunch feeding and then bolus. Nap time. Break for an hour...usually to do laundry and maybe eat lunch myself. Then cuddle a crabby Ruby as she wakes. Bolus again. Play some more and work on OT, PT, and speech goals. Make dinner. Dinner Feeding. Shove food in my mouth at some point. Dinner bolus. Play play play. Bedtime at 9 and if I'm lucky I can sneak out and try to unwind for an hour before it's bedtime for me...and that's where I have been getting stuck.
I just can't feel at peace. I'm just thinking about what I have left undone. How that baby gate is STILL not installed at the top of the stairs. How the laundry is piled everywhere in the bedroom. About how in Hell I am ever going to get Ruby to talk. About getting her to eat. And about whatever new bug or GI issue is plaguing Rubes at any given moment.
I need a vacation. Thank God camping is only 1.5 weeks away! Mauthe Lake...I need you!
Wednesday, May 4, 2011
Tuesday, April 19, 2011
Toddler-hood
I haven't written in a while but I wanted to take the opportunity to describe the person Ruby is developing into. She's such a marvelous child so I thought I'd let you all in on some of the things she is all about these days.
First and foremost Ruby LOVES books...no is OBSESSED with books. It's completely clear that she is the granddaughter of a librarian ;) She would be perfectly happy if all we did together was read. And that is not an exaggeration! She even goes to sleep cuddling her books! She is able to pick out most letters now, and I swear she is starting to recognize her name. What a smarty! We always joke that she is going to learn to read before she learns to talk.
Reading
More reading
Loving the trees
She has been wanted to play outside a lot lately...even this crazy weather hasn't made her wary of the outdoors. She is more than willing to walk on grass now, and seems to love her ability to explore the world on two feet. She has been really into the slides and climbing aspect of the playground. Swings...not so much.
Playground fun
Ruby is strong willed. She knows what she wants and will not be swayed from her chosen path. I LOVE that about her! She is just like Dan and I and although there are problems that arise from that type of personality, it is also the personality of a survivor. Ruby is most certainly a survivor. And it's great to see that she has an opinion about things, and that she's not afraid to express it. Believe me, despite her lack of language she expresses it VERY clearly. She is a very expressive child, although this can be hard for strangers to see because she is quite wary of them.
Ruby is also very sensitive. She gets frustrated quickly when learning something new. She is shy around strange adults, but warms instantly to new children. She is at peace with her family and her home. But she is very willing to explore new places...as long as strange adults who want to interact with her don't come with them. She does not like loud noises, especially sudden loud noises.
Ruby does love music though. One of my favorite things is to catch her jamming in the backseat while Pandora is blasting. She dances all the time. And very often can keep a beat with her hands, feet, or head. She is definitely going to be an Irish dancer :) We love to dance around the house together and she always claps after a song is done...even if there is no clapping on the track.
Action shot! Totally an Irish dancer :)
She is signing a few words. Her favorite one is "bird." She signs this not only for birds, but for planes in the sky, flies, and butterflies as well :) She also uses the sign "fish" when she sees the moon. I have no idea why, but it's pretty cute. The other day Dan and I were out walking with her in the evening and it was like she noticed the moon for the first time. She couldn't take her eyes off of it! She was absolutely mesmerized. Now every time we go out at night she looks for her friend the moon and stares lovingly at it.
Anyway...there's clearly so much more to my little girlie but that's a taste. She is such a miracle. I am loving every day she grows. Toddler-hood is a wonderful phase of life, and I am so grateful to be able to experience it with her.
First and foremost Ruby LOVES books...no is OBSESSED with books. It's completely clear that she is the granddaughter of a librarian ;) She would be perfectly happy if all we did together was read. And that is not an exaggeration! She even goes to sleep cuddling her books! She is able to pick out most letters now, and I swear she is starting to recognize her name. What a smarty! We always joke that she is going to learn to read before she learns to talk.
Reading
More reading
And of course she's got to have a book in the car :)
Other loves in Ruby's life: trees and all plants and flowers. Whenever we go outside she squeaks and points to every tree. She hugs them, pets them, and tries to kiss them. It's delightful. She also smells every. single. plant. Note that I say plant and not flower, she does not make too much of a distinction :)
Loving the treesShe has been wanted to play outside a lot lately...even this crazy weather hasn't made her wary of the outdoors. She is more than willing to walk on grass now, and seems to love her ability to explore the world on two feet. She has been really into the slides and climbing aspect of the playground. Swings...not so much.
Playground funRuby is also very sensitive. She gets frustrated quickly when learning something new. She is shy around strange adults, but warms instantly to new children. She is at peace with her family and her home. But she is very willing to explore new places...as long as strange adults who want to interact with her don't come with them. She does not like loud noises, especially sudden loud noises.
Ruby does love music though. One of my favorite things is to catch her jamming in the backseat while Pandora is blasting. She dances all the time. And very often can keep a beat with her hands, feet, or head. She is definitely going to be an Irish dancer :) We love to dance around the house together and she always claps after a song is done...even if there is no clapping on the track.
Action shot! Totally an Irish dancer :)She is signing a few words. Her favorite one is "bird." She signs this not only for birds, but for planes in the sky, flies, and butterflies as well :) She also uses the sign "fish" when she sees the moon. I have no idea why, but it's pretty cute. The other day Dan and I were out walking with her in the evening and it was like she noticed the moon for the first time. She couldn't take her eyes off of it! She was absolutely mesmerized. Now every time we go out at night she looks for her friend the moon and stares lovingly at it.
Anyway...there's clearly so much more to my little girlie but that's a taste. She is such a miracle. I am loving every day she grows. Toddler-hood is a wonderful phase of life, and I am so grateful to be able to experience it with her.
Monday, March 14, 2011
Can't Sleep
As I type it is 2:48 AM. I have not been sleeping well these past few days. Perhaps it is because of the sinus infection I've been fighting. Perhaps it is due to the fear that I constantly fight to keep at bay, knowing that at any moment our lovely Governor may make sweeping cuts to the programs that allow my daughter to live and thrive. Perhaps it is from the constant pressure, confusion, and frustration that comes from dealing with problem after problem that Ruby seems to be battling any given day or week. Perhaps I am just so relieved to have time to think and simply exist without the demands of being a good mother, wife, daughter, sister, friend, etc. that I refuse to relinquish such precious time to sleep. Whatever the cause. Here I type at what is now 2:53 AM intermittently crying and thinking and playing on the computer.
Everything felt so heavy this last week. I felt like I had 2o lb weights attached to each limb, in addition to the most suffocating 50 pounder on my chest. The week before this had been wonderful. Despite the bug Ruby was fighting off that week I was on. I was keeping up with housework, enjoying every breathe my lovely daughter exhaled, and relishing in the happy moments of my life. And then last Sunday, one week ago, I felt the weights pressing down on me again. Suffocating. That dreaded wasteland known as numbness began to take over. And I smiled for my daughter and I played with her and I still felt dead.
How is it that one week can feel so vastly different from the next? How is it that one day I am fine with all of the problems that lay before me and the next those same troubles pin me down with unrelenting force? I know this will pass. If I only smile enough and think less. If I can only will myself to take pleasure once again in the happy moments then the painful ones will feel smaller and less significant. But sometimes it is so hard to gather the strength to do that each and every day. But I will. Tonight I will cry and tomorrow I will smile. I will gather Ruby in my arms as she wakes with one eye glued shut and kiss her sweet face and I will smile. I will laugh at her joy and feel pride as she walks. I will read her books and take pleasure in every new thing she learns and absorbs. I will love her with every bit of my soul and feel her love for me returned. I will. I will. I will.
Everything felt so heavy this last week. I felt like I had 2o lb weights attached to each limb, in addition to the most suffocating 50 pounder on my chest. The week before this had been wonderful. Despite the bug Ruby was fighting off that week I was on. I was keeping up with housework, enjoying every breathe my lovely daughter exhaled, and relishing in the happy moments of my life. And then last Sunday, one week ago, I felt the weights pressing down on me again. Suffocating. That dreaded wasteland known as numbness began to take over. And I smiled for my daughter and I played with her and I still felt dead.
How is it that one week can feel so vastly different from the next? How is it that one day I am fine with all of the problems that lay before me and the next those same troubles pin me down with unrelenting force? I know this will pass. If I only smile enough and think less. If I can only will myself to take pleasure once again in the happy moments then the painful ones will feel smaller and less significant. But sometimes it is so hard to gather the strength to do that each and every day. But I will. Tonight I will cry and tomorrow I will smile. I will gather Ruby in my arms as she wakes with one eye glued shut and kiss her sweet face and I will smile. I will laugh at her joy and feel pride as she walks. I will read her books and take pleasure in every new thing she learns and absorbs. I will love her with every bit of my soul and feel her love for me returned. I will. I will. I will.
Wednesday, March 2, 2011
New Shoes
I don't want to write too much tonight. But I just wanted to say that in the midst of all these sickies that have been claiming our household, I find so much joy in raising Ruby. She has started to walk!!! Check out the video on Dan's FB page. Today my sister and I took the babies to the mall to get Ruby her first pair of "real" shoes. As we walked out of the store Casey kept smiling at me. I asked, "What?" And she said, "You're just beaming!" And I was! I can't help myself! I am just so immensely proud of her! And somehow buying new shoes made her walking feel more official. ;)
Walking opens up a whole new world for her. And the wonderful thing is that she KNOWS it! She is so happy and proud of herself as she toddles across the floor. So much frustration that she was carrying with her has been lifted away and I can tell that she feels free. It is absolutely magical! She is such a miracle. Such an amazing gift. I am so madly in love with her.
Who needs pants when you have awesome new shoes!?
To all of you whose children do walk and have no special needs, remember to hold these milestones in reverence. They do not come so easily for everyone and are such precious moments. Be proud of every new thing your child learns and never take anything for granted. I know I don't!
Walking opens up a whole new world for her. And the wonderful thing is that she KNOWS it! She is so happy and proud of herself as she toddles across the floor. So much frustration that she was carrying with her has been lifted away and I can tell that she feels free. It is absolutely magical! She is such a miracle. Such an amazing gift. I am so madly in love with her.
Who needs pants when you have awesome new shoes!?To all of you whose children do walk and have no special needs, remember to hold these milestones in reverence. They do not come so easily for everyone and are such precious moments. Be proud of every new thing your child learns and never take anything for granted. I know I don't!
Monday, February 21, 2011
Politics...Again
In Wisconsin Governor Scott Walker has declared war on its citizens. Some of them are aware of it, and some aren't. I am. I am aware because in this "Budget Repair Bill" there are quite a few items that threaten the life of my child. This bill, along with so many other heinous acts, allows for a very small and very conservative group of legislators, who have all but pledged their souls to Scott Walker, to exclusively make sweeping cuts to our state's Medicaid program. My daughter life is at stake. And that is one of the reasons I can not sleep at night.
When I bring this up to others, I often hear conservatives say that, "cuts must be made" or "I am not responsible for your child." Here is the problem I have with that: If a child is kidnapped would we ask parents to shoulder the costs of a state-wide search? If a child is murdered, would we demand that parents pay to seek retribution? If a child is threatened with sexual abuse should parents pay for a task-force to rescue that child in order to prevent the psychological damage that would be caused? No. The answer is always no. We pay for police. We pay for the protection of our children and ourselves through our taxes. So why is my child's life less valuable?
Undoubtedly when a child is rescued from such horror we rejoice. The media covers the events and all of the officers and political leaders involved are praised. I suppose that does not happen when a special needs child takes their first steps. Or when they say their first word. Or even when a special needs child is able to simply live because of their home oxygen equipment or their feeding pump. The parents rejoice these victories but the leaders of our city and state get no attention. And yet these are true victories. These things come to pass because the state supplements pay for the therapies and for the medical care these children need to live. The state does not allow these children to perish because a life is worth something! Not just to their family, but to society. We collectively value our children, just as we should value each other. We need to do this because it is the whole point of gathering together as a society...Otherwise what is the point?
If Walker and the conservative lawmakers in this state get their way, Ruby will suffer. Her quality of life and medical treatment will suffer, make no mistake that is not an exaggeration. If you support Governor Walker you want my child to suffer. You would rather save yourself a $40 tax hike than ensure the life of my child. Are the lives of our citizens with special needs so worthless to you? What about the elderly? The poor? Are they worthless too? Yes we must make cuts...but somethings can NOT be cut! LIVES CAN NOT BE CUT! Find another way Scott Walker, or the lives lost will be on your head.
I mean seriously!? How could you not want this little girl to make it?
When I bring this up to others, I often hear conservatives say that, "cuts must be made" or "I am not responsible for your child." Here is the problem I have with that: If a child is kidnapped would we ask parents to shoulder the costs of a state-wide search? If a child is murdered, would we demand that parents pay to seek retribution? If a child is threatened with sexual abuse should parents pay for a task-force to rescue that child in order to prevent the psychological damage that would be caused? No. The answer is always no. We pay for police. We pay for the protection of our children and ourselves through our taxes. So why is my child's life less valuable?
Undoubtedly when a child is rescued from such horror we rejoice. The media covers the events and all of the officers and political leaders involved are praised. I suppose that does not happen when a special needs child takes their first steps. Or when they say their first word. Or even when a special needs child is able to simply live because of their home oxygen equipment or their feeding pump. The parents rejoice these victories but the leaders of our city and state get no attention. And yet these are true victories. These things come to pass because the state supplements pay for the therapies and for the medical care these children need to live. The state does not allow these children to perish because a life is worth something! Not just to their family, but to society. We collectively value our children, just as we should value each other. We need to do this because it is the whole point of gathering together as a society...Otherwise what is the point?
If Walker and the conservative lawmakers in this state get their way, Ruby will suffer. Her quality of life and medical treatment will suffer, make no mistake that is not an exaggeration. If you support Governor Walker you want my child to suffer. You would rather save yourself a $40 tax hike than ensure the life of my child. Are the lives of our citizens with special needs so worthless to you? What about the elderly? The poor? Are they worthless too? Yes we must make cuts...but somethings can NOT be cut! LIVES CAN NOT BE CUT! Find another way Scott Walker, or the lives lost will be on your head.
I mean seriously!? How could you not want this little girl to make it?Tuesday, February 15, 2011
Cardio Update
Ruby had her first cardiology appointment in 6 months today!! That's the longest we've ever gone without a visit to them...it was a wonderful break. Today was stressful, as all appointments are. Ruby HATES going to the hospital and as soon as we pulled into the parking structure she started becoming upset. It's funny that she's fine with parking in the 15 min lot outside because whenever we park there we are just running into the pharmacy to pick up meds. She clearly knows that parking structure=appointments=her personal space being violated. Nothing invasive had to happen today, thank goodness, but Ruby still screamed bloody murder every time a nurse/doctor came within 2 feet of her. Poor kiddo...looks like diaper changes are going to be hard for a while. She always regresses after a visit to the docs and won't let me change her without being terrified I'm going to hurt her. So sad :(
BUT the appointment itself brought good news so I will try to focus on that! Ruby no longer needs captopril! How awesome is that! Captopril is, by far, her most annoying med because we have to administer it 3 times a day. This will mean Ruby only needs 2 meds every morning. Truly a wonderful development :) Ruby will need an ECHO in 4 months and we will find out more about her heart function then, but for now...it's all good. Another good development is that Ruby gained some more weight! She is well over 21 lbs. This is actually a pretty big gain over the last 2 weeks so perhaps GI will tell us to feed her a bit less. I would welcome that because it would mean she might be able to come off of the feeding pump quicker. But that's all conjecture at this point so we shall see...
See? I promised you a happier post and I delivered. Yay me :) Also, sorry for the lack of pics but I can't pull them off of facebook to put on here because my computer has no space! I'm sure there is an easier way to do it but I'm too lazy to figure it out. Most of you are friends with me on FB anyways so you can always go to my page and check out how cute Ruby is there ;)
BUT the appointment itself brought good news so I will try to focus on that! Ruby no longer needs captopril! How awesome is that! Captopril is, by far, her most annoying med because we have to administer it 3 times a day. This will mean Ruby only needs 2 meds every morning. Truly a wonderful development :) Ruby will need an ECHO in 4 months and we will find out more about her heart function then, but for now...it's all good. Another good development is that Ruby gained some more weight! She is well over 21 lbs. This is actually a pretty big gain over the last 2 weeks so perhaps GI will tell us to feed her a bit less. I would welcome that because it would mean she might be able to come off of the feeding pump quicker. But that's all conjecture at this point so we shall see...
See? I promised you a happier post and I delivered. Yay me :) Also, sorry for the lack of pics but I can't pull them off of facebook to put on here because my computer has no space! I'm sure there is an easier way to do it but I'm too lazy to figure it out. Most of you are friends with me on FB anyways so you can always go to my page and check out how cute Ruby is there ;)
Thursday, February 3, 2011
Mind Garbage
*The title of this one tells it all. This is just the nasty stuff that's been rolling around in my head the last few days when it's late at night and Ruby is asleep. I apologize in advance.
This blog has become invaluable to me, mainly in its purpose of allowing me to truly express how I feel about mothering an extraordinary and yet medically complicated child. I belong to several groups as a mother. I don't mean the card-carrying kind of groups. I mean that I place myself into categories as a mother. I am a mother of a child with a chromosomal abnormality, a 22q mom. I am a "heart mom." I am also a baby-wearing, co-sleeping, natural child-birth kind of mom. The other relationships with mothers that Ruby and I associate with have mostly grown out of these three categories. And I am thankful for the internet and the ability to connect with some of these other families that it has provided. And yet sometimes, as we all do, I feel so alone in my role as a mother to Ruby. While it is true that other parents share similar concerns for their children as I do in raising Ruby, sometimes I just feel so weighed down and alone in it all.
From the internet we only see snipets of what other people's lives are truly like. Some people only share the best, and others share the worst. That leads me to make comparisons that aren't truly accurate or fair. This also leaves me feeling alone and inadequate. We are all so horribly trapped in our own minds, aren't we? No one can feel exactly what we feel and even when we try to bridge the gap between us we usually fall short. Words are such a limited way to communicate. Empathy is so difficult. The only person I've ever seen succeed in being truly empathetic is probably my mother. That woman cares so much...about everyone...it amazes me. But now I'm getting off topic...
This blog is a way for me to bridge that gap. To let people into what I'm thinking and feeling, mostly for selfish reasons but also because I want people to know what I feel in the hopes that they will feel less alone. Perhaps they can relate to some small part of my experiences. I know that's why I read other parents' blogs. They give me hope and make me feel less isolated. Sometimes they do the opposite, because well...heart defects are unforgiving. They kill. And reading other children's stories sometimes remind me of that. It scares me so much. Sometimes the fear is paralyzing, as I'm sure I've mentioned before.
Ruby has been coughing a lot at night and during her naps. That scares me. Would a "normal" parent say it's a cold and move on? Maybe not. Maybe they would worry about it like I do. But I know Ruby's lungs aren't great. They never will be. Her lung profusion isn't the same as the rest of the population and she will always be more fragile because of it. So every cough frightens me. Especially when it does not seem to be connected with an obvious virus. I plan on calling her ped tomorrow if the coughing persists. And it's probably nothing but we'll see.
So I'm going to get right to it: I don't want my child to die. I don't want her to die before me, but I know that is most likely. I want her to make friends, and date, and get into trouble, and do all of those things. What will her life be like as she grows? Will she be significantly delayed. Will she be intelligent enough to know she is different and see how that difference separates her from her peers. Will she even get a chance to think about that? Will she die after her next surgery? Or the next one? I wish I knew. I know that probably sounds crazy, but if I knew she was going to die before she reached adolescence at least I wouldn't have to worry about those awful years. I wouldn't have to worry about whether or not to have another child. Dan and I talk about it with each other. And we both know we wouldn't want another child if we lost Ruby. I just don't think I could do it--to raise another child and have that child not know their sibling. I think I'm too selfish and that I wouldn't be able to adequately raise another child with Ruby gone. I would be to lost and I think that I wouldn't be a very good person, let alone a good parent. And yet, if Ruby lives and thrives as she is now, I want her to experience the joy of a sibling. And I would love to have a house filled with children, just not without her.
I know how well she is doing at the moment, but I hear of so many deaths. And I know that my child is not exempt from the evils of her CHD. Some people seem to have the attitude that things happen for a reason or God has a plan, but I don't think that. I believe in God but I don't think He works like that. I just don't. And maybe that would give me solace and I'm glad it helps others, but to me...well my brain just doesn't allow that kind of thinking. I really hope that doesn't offend anyone because that is not my intent...just trying to bridge that gap.
Goodness, so many things have been turning around in my mind lately that this is quite a jumble. There is more too. I've been angry. Angry that Ruby is different. Angry that she has to fight so hard for every new skill. Every milestone. Angry at other people for not understanding. Angry at other people for not trying to understand. All irrational feelings, because I know that the people around me love and care and do try to understand. But sometimes I still feel it. I am angry that for the first time I felt a pang of jealousy when my sister told me her son ate sweet potatoes for the first time and loved it. Not angry at him or her but with myself for feeling that way. I am foremost happy for her and him because I love him like he's mine, but I just wish Ruby could eat. If I did have another child and they were eating before Ruby I know would feel the same jealousy...how weird is that? I wish it wasn't so hard. That every. single. meal. wasn't so damn hard. It's so effortless for some and I know that my sister doesn't take it for granted because she feels Ruby's struggles along with me, and so when her son eats she knows exactly why she should be so happy and proud of him. And I feel that way too. Unfortunately there is that nasty pain in my chest that hits me back and reminds me that Ruby is different. Different. Different.
And I just hate it. So much that I want to scream. And most of the time I don't feel like that but right now I do. It probably seems like a feel that way all of the time from the posts on this blog, but the truth is the only times I feel that way are when I write a post like this. Because sometimes it builds up to a point and erupts on here. Most likely this one is due to too much time sitting at home during these snow days with too much time to think. Don't get me wrong I've loved these lazy days, but I think tomorrow an adventure out of the house is in order. Because lately, I've been thinking far too much. Thinking about all of the times I have been out in public and given Ruby a bolus feed. People stare or they avoid. I don't know what I expect of other people. Perhaps just a smile and nod as you would to any mother feeding her cute toddler. I don't know. It's not their fault...it's just irritating. I often push back feeds to avoid the issue when at others' houses. I don't know why, because these people are my friends and they would understand, but it's sometimes just easier to avoid the look on people's faces when I pull out the tubes. A sense of guilt is washing over me for feeling that way. I should never be embarrassed. Ruby has gone through too much for me to ever feel embarrassed or uncomfortable. And if I feel that way now, what kind of self-value will that give her? Sometimes I feel as if all I do is fail her...even though I know that's not really true. After all, I'm human and susceptible to all of the same unwanted emotions that we all get from time to time.
OK, that's enough negativity for now. Next post will be a happy one I promise ;) Just needed to vent. And so there it is. Sorry for being such a downer but if I get all of this out on here, then I seem to be able to function as a happier and more stable person in the real world. Thank you internet people for listening...or reading...or whatever :P
This blog has become invaluable to me, mainly in its purpose of allowing me to truly express how I feel about mothering an extraordinary and yet medically complicated child. I belong to several groups as a mother. I don't mean the card-carrying kind of groups. I mean that I place myself into categories as a mother. I am a mother of a child with a chromosomal abnormality, a 22q mom. I am a "heart mom." I am also a baby-wearing, co-sleeping, natural child-birth kind of mom. The other relationships with mothers that Ruby and I associate with have mostly grown out of these three categories. And I am thankful for the internet and the ability to connect with some of these other families that it has provided. And yet sometimes, as we all do, I feel so alone in my role as a mother to Ruby. While it is true that other parents share similar concerns for their children as I do in raising Ruby, sometimes I just feel so weighed down and alone in it all.
From the internet we only see snipets of what other people's lives are truly like. Some people only share the best, and others share the worst. That leads me to make comparisons that aren't truly accurate or fair. This also leaves me feeling alone and inadequate. We are all so horribly trapped in our own minds, aren't we? No one can feel exactly what we feel and even when we try to bridge the gap between us we usually fall short. Words are such a limited way to communicate. Empathy is so difficult. The only person I've ever seen succeed in being truly empathetic is probably my mother. That woman cares so much...about everyone...it amazes me. But now I'm getting off topic...
This blog is a way for me to bridge that gap. To let people into what I'm thinking and feeling, mostly for selfish reasons but also because I want people to know what I feel in the hopes that they will feel less alone. Perhaps they can relate to some small part of my experiences. I know that's why I read other parents' blogs. They give me hope and make me feel less isolated. Sometimes they do the opposite, because well...heart defects are unforgiving. They kill. And reading other children's stories sometimes remind me of that. It scares me so much. Sometimes the fear is paralyzing, as I'm sure I've mentioned before.
Ruby has been coughing a lot at night and during her naps. That scares me. Would a "normal" parent say it's a cold and move on? Maybe not. Maybe they would worry about it like I do. But I know Ruby's lungs aren't great. They never will be. Her lung profusion isn't the same as the rest of the population and she will always be more fragile because of it. So every cough frightens me. Especially when it does not seem to be connected with an obvious virus. I plan on calling her ped tomorrow if the coughing persists. And it's probably nothing but we'll see.
So I'm going to get right to it: I don't want my child to die. I don't want her to die before me, but I know that is most likely. I want her to make friends, and date, and get into trouble, and do all of those things. What will her life be like as she grows? Will she be significantly delayed. Will she be intelligent enough to know she is different and see how that difference separates her from her peers. Will she even get a chance to think about that? Will she die after her next surgery? Or the next one? I wish I knew. I know that probably sounds crazy, but if I knew she was going to die before she reached adolescence at least I wouldn't have to worry about those awful years. I wouldn't have to worry about whether or not to have another child. Dan and I talk about it with each other. And we both know we wouldn't want another child if we lost Ruby. I just don't think I could do it--to raise another child and have that child not know their sibling. I think I'm too selfish and that I wouldn't be able to adequately raise another child with Ruby gone. I would be to lost and I think that I wouldn't be a very good person, let alone a good parent. And yet, if Ruby lives and thrives as she is now, I want her to experience the joy of a sibling. And I would love to have a house filled with children, just not without her.
I know how well she is doing at the moment, but I hear of so many deaths. And I know that my child is not exempt from the evils of her CHD. Some people seem to have the attitude that things happen for a reason or God has a plan, but I don't think that. I believe in God but I don't think He works like that. I just don't. And maybe that would give me solace and I'm glad it helps others, but to me...well my brain just doesn't allow that kind of thinking. I really hope that doesn't offend anyone because that is not my intent...just trying to bridge that gap.
Goodness, so many things have been turning around in my mind lately that this is quite a jumble. There is more too. I've been angry. Angry that Ruby is different. Angry that she has to fight so hard for every new skill. Every milestone. Angry at other people for not understanding. Angry at other people for not trying to understand. All irrational feelings, because I know that the people around me love and care and do try to understand. But sometimes I still feel it. I am angry that for the first time I felt a pang of jealousy when my sister told me her son ate sweet potatoes for the first time and loved it. Not angry at him or her but with myself for feeling that way. I am foremost happy for her and him because I love him like he's mine, but I just wish Ruby could eat. If I did have another child and they were eating before Ruby I know would feel the same jealousy...how weird is that? I wish it wasn't so hard. That every. single. meal. wasn't so damn hard. It's so effortless for some and I know that my sister doesn't take it for granted because she feels Ruby's struggles along with me, and so when her son eats she knows exactly why she should be so happy and proud of him. And I feel that way too. Unfortunately there is that nasty pain in my chest that hits me back and reminds me that Ruby is different. Different. Different.
And I just hate it. So much that I want to scream. And most of the time I don't feel like that but right now I do. It probably seems like a feel that way all of the time from the posts on this blog, but the truth is the only times I feel that way are when I write a post like this. Because sometimes it builds up to a point and erupts on here. Most likely this one is due to too much time sitting at home during these snow days with too much time to think. Don't get me wrong I've loved these lazy days, but I think tomorrow an adventure out of the house is in order. Because lately, I've been thinking far too much. Thinking about all of the times I have been out in public and given Ruby a bolus feed. People stare or they avoid. I don't know what I expect of other people. Perhaps just a smile and nod as you would to any mother feeding her cute toddler. I don't know. It's not their fault...it's just irritating. I often push back feeds to avoid the issue when at others' houses. I don't know why, because these people are my friends and they would understand, but it's sometimes just easier to avoid the look on people's faces when I pull out the tubes. A sense of guilt is washing over me for feeling that way. I should never be embarrassed. Ruby has gone through too much for me to ever feel embarrassed or uncomfortable. And if I feel that way now, what kind of self-value will that give her? Sometimes I feel as if all I do is fail her...even though I know that's not really true. After all, I'm human and susceptible to all of the same unwanted emotions that we all get from time to time.
OK, that's enough negativity for now. Next post will be a happy one I promise ;) Just needed to vent. And so there it is. Sorry for being such a downer but if I get all of this out on here, then I seem to be able to function as a happier and more stable person in the real world. Thank you internet people for listening...or reading...or whatever :P
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