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!

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?

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 ;)

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

As Always...Two Steps Forward, One Step Back

I fear that the last time I posted with overconfidence on the subject of Ruby getting off of her feeding pump. Everything had been going along fine until we hit 8 oz boluses. We had been increasing the amount by 1 oz per bolus every week and she had NO difficulties. Then we hit 8 and she started projectile vomiting. After a few more attempts it was clear that it was not going to happen so we backed down to 7 oz. But ever since we tried 8 and she vomited, she has been grunting and straining to push the food back out of her stomach and into the syringe which have turned feedings into a complete struggle. So now we are back down to 4 oz boluses...where we started. And she still has some trouble allowing those feeds to go in smoothly :(

All of this has got me down. Really down. I was so happy about her reaching the 8 oz goal. It meant no more feeding pump...EVER. But that is not the case. And worse it seems like we might have ruined the whole bolus feeding experience for good. I'm afraid this has worsened her oral aversion as well. She seems to think it a negative thing when her tummy starts feeling full, which was the exact opposite intention of switching to boluses. She has not been eating much at all these last few weeks. It's been a big deal if we can even get her to taste again. Sadness all around.

I'm really really hoping these changes won't stick and that she'll get back on track with her feedings and with eating soon. It's so hard to see her falter and not know what to do to help her. I'm tired of it. Tired of every meal being a battle. Every feeding a nightmare. I know I should be grateful for the progress she has made and rejoice in things like her being off of the pump during the day, but right now I'm just bummed. It never seems to get any easier even when it does. She is dealing with food so much better than she was this time last year and yet the distance between how she interacts with food versus most other children still feels so very far.

Anyways, I don't have too much time to edit this or finish off in a nice way...just wanted to explain what's been going on lately. Let's hope for better days soon.

Sassy Toddler Syndrome

Last week was rough. Ruby became a toddler last Wednesday...seriously it happened that quickly. Because of her chromosome deletion I'm always on the lookout for behavioral disorders. And as much as I HATE to put her in that box and slap a label on the outside, it's so hard not to. I was so stressed those first couple days. And when stressed I become vulnerable. Susceptible to ideas like, "draw a hard line with your child," "set strict boundaries," "be rigid with discipline." But I know that I am not that mom. That's just not who I am. I am not a screamer. I am not strict. I am quiet...most of the time. And I am flexible. That is how I am going to parent my child.

Ruby is not quite 1 1/2 years old. She is in an odd stage of life. She understands desire, want, and pleasure, but has an extremely limited concept of self-control or patience. She can't even communicate her frustrations and I know she feels limited by her inability to walk and move the way her peers do. All of these things lead to minor behavioral problems. I see very clearly now that they are NOT abnormal behavioral problems. Ruby is simply a toddler.

I know that Dan and I were both demanding children. Actually Dan is still demanding :P We are very emotional, we are very contrary, we are VERY stubborn about certain things and as toddlers I can only imagine how these traits exhibited themselves. Undoubtedly Ruby is like us. She is very determined and insistent, and while these characteristics helped her to survive her first few months in this world they can make for a combative toddler. Thank goodness she is also incredibly affectionate, bright, compassionate, and adorable. :)

I feel renewed and freed by this realization that she is simply growing up. And I know I can handle it, because my mom could handle me, and Dan's mom could handle him--although I have no idea how! But here's how I plan to "handle" Ruby: I will love her. I will acknowledge all of her accomplishments and all of her good behavior. I will not sweat the small stuff or turn our house into a war zone where it's parent vs. child. I will keep things upbeat and positive and transition quickly out of discipline with distraction. And I will have fun with her! Because after all this is a very little person we are talking about. What good does it do to scream at or punish someone who can not understand what is going on. The only thing she will learn from that is to mimic aggressive and negative behavior and that is not who I want my child to be. I think that some people are too quick to use the word spoiled when a kid is merely being a kid. A child is not spoiled because they whine or throw a tantrum or two. They are a CHILD! That doesn't mean I will reward bad behavior or allow Ruby to hit or have everything she wants just because she wants it. It means that I will discipline her the way a 1 1/2 year old should be disciplined--with a whole lot of forgiveness and understanding for what she is going through as a developing human being.

Happy Holidays!

Hope everyone had fun during the Holidays, I know our family did! One Ruby plus one Ronan equals a whole lot of happiness for everyone. Both Christmas and New Year's Eve were relatively relaxing holidays for us and that was just fine by me!

"Uh, Ruby? You know there are presents under the tree, right?"

Ruby has been doing great. She hasn't had a cold for a week or so and that's been a big relief. Boy did we need a break form runny noses, coughs, and keeping ourselves in quarantine. It's been nice to be out and about like we usually are. We've made it to Discovery World and the Domes recently which were fun as always. Casey and Ronan joined us at the Domes, and both kiddies adored it. I really hope our babies have as much fun growing up together as we did. Every day was an adventure. :)

Some of the family at Christmas. I love these people :)

In other news I'm pretty sure Dan has gotten me addicted to coffee. I've always liked coffee but since we started trying to have kids I cut the habit so since then I haven't had much caffeine. But now that he's working from home there is always coffee being made and I inevitably drink some. And now I am dead to the world until I have at least two cups...bummer. I know this is not a Ruby update but I really miss being able to just wake up and go! Husbands...

Need I add a caption to this?

But speaking of a Ruby update: GI-wise she has been...well, she's like a different child! 75% of her feeds are done as bolus feeds during the day, with the other 25% still on the pump at night. This is AMAZING! It means that she does not have to be attatched to that thing during the day, a true joy now that she is so mobile and close to walking. It's also is a sign that her reflux is under control. Last year Ruby was on the pump for 20 hours a day, being fed into her intestine, and her stomach was still vented 24/7 into a sputum trap. What a lovely name, right? So much fun to explain that one to strangers. "What's that? Oh, that's her sputum trap. Those are just her stomach juices sloshing around in there...just ignore it." Sure... Anyways, now she is fed into her tummy, and is being fed in a far more "normal" fashion. I can honestly say I never thought she would get to this point, at least not by this age. I am so happy for her, and I believe she will be off of the pump entirely in a few weeks! Yay, Ruby!!

Passed out after Christmas fun

Other than that life's been good...normal good. Sometimes happy, sometimes sad. I'm looking forward to a good year with my baby. Hopefully it will be surgery free and we won't have any major hospitalizations. So wish us luck!

Happy New Year! And YES, she made it to midnight!