Over-Thinking

I am most definitely a person who over-thinks things, which is probably why I love writing this blog so much. It's a way for me to sort things out in an organized fashion...or at least a slightly more organized. Anyways, I am fairly neurotic. I can be extremely self-conscious, as those closest to me know. I constantly worry about the relationships in my life; whether they are strong enough and so forth. I worry about whether I have let someone down or out, whether I have been a good enough friend, sister, daughter, wife, and of course mother. The list goes on and on. Sometimes these worries consume me. I feel suffocated and the very things I worry about come to fruition because I am in too dense a fog to prevent their occurrence. Lately one of the things I'm been over-thinking is Ruby's behavior and development.

Now I know I've talked about her development before, and I know that's something that every parent thinks about and worries about...especially parents of kids with 22q. But I also constantly worry about her behavior. I'm aware that many children with 22q Del have behavioral problems and that is ALWAYS in my mind when I watch Ruby play, get sassy, or interact with other kids. So far, when I think about it calmly and rationally, I don't think she has exhibited any behaviors that I find abnormal for her age. She does have a tendency to use repetitive behaviors to self-soothe...but it's not quite self-stemming. It's actually quite similar to some of the of things I do; things like rubbing my left arm while speaking in front of others or moving my toes together when I get mad. And her actions have not become obsessive or inhibited her play so her OT has said not to worry. I really should take her advice.

Other things that often concern me are normal toddler things. Whining about things, throwing tantrums (usually only when tired or sick), getting mad about sharing toys. While these are all standard for a toddler I am always thinking, "Oh no! Does she have a behavioral disorder? Is she not listening because of ODD? Why is she not playing nicely?" Ah..the mind of a mother! Anyway, all of these things circle in my head day after day. And I've decided to stop the cycle. No more. No more over-thinking. Ruby is who she is. She is going to fuss and whine, sometimes more than other children and sometimes less. She is not a perfect person and neither am I. I am going to deal with her moods and behavior the way I see fit, and not the way others do. I am going to enjoy all of her and not get preoccupied with how I think she "should" be acting. So there world! I am putting it out there...no more over-thinking!!!

OK, well maybe just less over-thinking. After all we can't change our very nature ;)

Not Talking

Things are so good most of the time. Life moves along steadily, and for me with Ruby, very often joyfully. I wake up, get Ruby's feeding pump set. We cuddle, get dressed, slowly drag ourselves from bed. We play, eat (a little bit), go on play-dates, read, and do all of the normal things that a toddler and mother duo might do. And then there are days like today. Days that seem completely fine. Busy, normal-for-us days, and yet I find myself sobbing as I ride home in the car. So why did that happen?

I don't know for certain. I assume it was just one of those things. One of those cosmic piling of events and circumstances that lead a person to feel like crap about a particular topic...if that makes any sense. We had Speech today. It went fine, just like most of our speech sessions. Later we had an ENT appointment--more talk about talking, so to speak. Ruby and I went to dinner with friends and one tiny little thing someone said there set me off. I don't mean I was mad at them, I wasn't and I'm still not. I don't think I even seemed sad at the time. But what was said brought out my own insecurities. That I am failing her. That I am doing something wrong. And that I am the reason why Ruby is not talking.

Maybe I am. I don't know and that is part of what makes it so frustrating. Is it the 22q, is it the delayed start she got from being in the hospital so long, is it from us and how we interact with her, or is it just...her? Who knows?! I certainly don't, and although I feel as though I am doing everything in my power to help her speak perhaps I'm not. I follow my instincts and I think that I've doing a pretty good job, but nobody is perfect.

I really hate being so touchy about this. I hate that one person can make a COMPLETELY innocent comment and I'm off. My little brain just runs rampant with all of the perceived implications of what that person truly meant. By the time I'm done over-analyzing and totally misconstruing what that person said I am a mess. And that's what happened on my ride home today. So friend, if you read this and know I'm talking about you, please know that this has NOTHING to do with you and all to do with me and my own crazyiness.

My sister said the other day that the two things she has learned about parenting are to be flexible and don't judge. Because nothing happens the way you plan it and we all are just trying to get by the best way we can. It's so easy to be defensive when it comes to your kids, and when you have a kid that's different I think that the defensiveness goes into overdrive. There's all this baggage when your child has problems. For me, I'm so used to being Ruby's protector and advocate that I take offense and get emotional pretty quickly. Tonight I hid it from my friends but as soon as I had time to stew in my own thoughts I lost it.

Gah! I feel like this post is all over the place! Oh well, at least it's an accurate representation of my state of mind ;) So how to conclude? I guess I want to say that even though most of the time I feel OK about Ruby not talking, it's something that I know she's behind on and that makes me worry. And one of the things I worry about is that I am somehow to blame. So if you know me and love me, and we ever start discussing my little "non-talker" just keep all this in mind if I start acting crazy.

The Non-Talker...at least she's cute ;)

The Stereotypical Thanksgiving Post

Well, I debated whether or not to take part in the whole, "I'm thankful for..." blog thing that seems to happen on most people's sites and you know I just couldn't resist ;) So I'm thankful for:

The way Ruby wakes up like a pop-tart in the morning. She's fast asleep and then "pop" she sits up and is ready to play.

My husband's brain. Boy do I find his smarts sexy.

Ruby's love of music. She just has to dance to everything she hears.

My mother who, if you know her, is well...she's just the perfect mom and granny.

The fact that I can call up my sister and do just about any mundane thing with her like go to the store and we have an amazing time.

My nephew's dimples. I just want to eat him up.

Ruby's cuddles. Her cuddles are so intense and affectionate that you just melt.

My dad's hugs. They still make me feel warm and safe.

How Ruby needs to give everyone a kiss around her if she even kisses one person. And the fact that it has to be on the lips.

My friends, who really are the best friends in the world and they know it. Nuff said.

For everybody and everything that I don't have time to mention here but that makes me smile...and that is a big list.

Getting to know new people who face similar challenges as us with their brave and beautiful children.

Ruby's curls. They are just so frickin cute.

How Dan sleeps with Ruby in his arms every night, and how she has a crazy hard time falling asleep without him.

The amazing support I have received from extended family and friends. You all know who you are.

The way Ruby shrieks with glee at every single balloon she sees. Same goes for trees, dogs, cats, and signs.

Taking long walks with my baby.

All of the people in my life, past and present, who have helped me to become the person I am.

Wine.

My daughter's life. She makes me a better person and gives me more joy than I ever thought a body could handle.

For the best year of my life.

NICU Memory

Just a little post tonight. Ruby had a playdate with a couple of her heart buddies today. While there, we mamas started swapping hospital stories and I recalled how we used to get my sister to see little Rubes. The NICU has a strict visitation policy. Only Dan and I, and our parents, were allowed to see Ruby for the first 4 1/2 months of her life. My sister had seen her at her birth and for one visit when she came home for her 2 day stint at 2 months old. This, of course, was heart breaking for her and for me.

Meeting her Auntie for the first time since birth

When we were back in the NICU and had FINALLY gotten a "window seat" we devised a way for Casey (my sis) to see Ruby. There is a waiting area just outside the NICU that is perpendicular to the main hall of the wing. So basically, if you are in the waiting area you can look out of the window and see into a few of the NICU rooms. At night, if you turn on the lights in the NICU and turn off the lights in the waiting room, you can see in pretty clearly. When we figured this out Casey used to come by and we'd hold little Ruby as close as we could to the window (as far as her leads and various wires would stretch) and she'd be able to see her niece. It was so sweet...and sad.

Anyway, I'm glad they get to spend so much time together now. It took months of consistent weekly visits for Ruby to get so close to her, but all that devotion paid off! Now when we pull up to her Auntie's house Ruby squeals and points with anticipation...she just loves her Auntie Casey :)

I LOVE this pic! I need a new one of them though, because Casey is quite pregnant here!

Ruby's OHS Annivsary

Last year around this time we were finally reunited with Ruby after our longest parting. The actual surgery latest for 11 hours but we were separated from 8am until around 10pm. When I think back to that morning I remember feeling the same way that a person does when waking up early to take a long trip...with all of the happy anticipation replaced with terror. We woke up very early in order to get to the hospital and spend time alone with our daughter. When we arrived I remember thinking, "Should I wake her up?" We did. We knew that we both needed to hold her for what could be the last time. We both needed to imprint that memory so that it would be something we could always look back on with peace and fulfillment. Ruby was calm and affectionate. She snuggled deeply in our arms as she done many times before and rested. My parents came and even the cleaning lady I mentioned in yesterday's post came in early to visit with her. We all tried to remain calm in order to prevent Ruby from becoming nervous. And as the morning wore on more and more medical personal started sifting in.

We signed consent forms and were presented with the same information and disclaimers we had been told many times before. And suddenly it was time to say goodbye. I had to take the hardest walk I've ever taken. Sadly it's a walk I will have to take again and again as Ruby grows. I carried my child, with Dan by our side, to those double doors that parents can't cross. Even now, recalling that walk and that separation causes my heart to catch in my throat. It was terrifying. It felt like a death march, like I was willingly handing my child over to an executioner. I wanted to soak up every moment with her and I was so scared my last memory would be of her crying. She did not. I hugged her and tried so hard not to cry. I didn't want her to see fear or sadness in my eyes. She went off with the nurse, thankfully without a struggle but as soon as those doors closed I erupted. My heart broke with the loss of control and the potential loss of my daughter. I kept thinking about the fact that in moments she was going to be restrained. And in that instant she would be afraid. I hated that her last thoughts would contain fear. I hated that I couldn't be there to hold her. I still hate it. I hope she wasn't too frightened...but I'm sure she was. Just as she now is during every doctor visit and every hospitalization. It was horrible and it still is.

The walk back to her room to meet my parents and collect the last of her belongings seemed incredibly long. I didn't want to look at my mother. I knew she would be crying and that my tears would cause her to cry harder. I made myself stop. I regained composure and knew that was the only slip I would allow myself. The rest of the day I would remain clinical and distanced from what was really happening in order to survive. Thankfully I was able to do just that.

We made our way to the waiting room and in there well...we did just that. That place was not so much fun after 11 hrs or so. First of all it was quite uncomfortable. They were doing construction next door so it was loud. The chairs were stiff. There were no couches. It smelled like urine. (The new waiting room is WAY better) We're also stuck in this room with families whose kids are in surgery for really minor things. And it's kind of hard to hear all of these parents talk about ridiculous fluff while your kid is on the table for something that has just as good a chance at killing her as it does saving her. Anyway, the rest of the day went by in that smelly little room. We got updates every hour or so. I would go and pump. We would eat a little something. It took forever.

Ruby Post-Op

One of the best updates we received was that the surgeon had attempted a complete repair. Up until that point we were unsure if only a partial repair could be completed. That would mean another surgery in a few months and possibly not going home until after that second operation. So we were overjoyed to hear that was not the case. But, if you know Dan and I, we don't like to get too happy about things until all is said and done, and so we remained skeptical of the outcome. Around 11 hrs after we had said goodbye to Ruby, we got the update that the surgery was done! We were now shuffled to another waiting room outside the CICU and waiting for what seemed like an eternity (around 2 hrs). We got the word that they were going to be wheeling Ruby to the CICU and that we would be able to see her briefly in passing. When we saw her bed coming we were not surprised or scared. All of our preparation had proven very helpful. I was just relieved to see her face after thinking that I never would again. What I do remember was that I told Dan, "She looks so pale." He said, "Kerry, that's what pink looks like" as he pointed to her monitor. Her O2 saturation level was 100%. Even in those early days she'd never hit 100. Never.

We had to wait some more and we were eventually admitted into her room. It was bright. It was crowded with pumps. We had 2 nurses devoted just to little Ruby. The monitors beeped constantly. But I remember sleeping better that night than I had since the day she had been readmitted to the hospital after our short stint home. In the CICU you are allowed to sleep in the room with your child. I was there to guard over her and protect her as I should have been since the beginning. I knew enough from our research that she was no where near safe. That the next few days and weeks would be the most trying for her, but I felt such immense relief because I was so close to her. I was able to sleep by her side and have never spent a night away from her since.

Still so beautiful. Nothing quite like seeing your child's heart beat from the outside though. :/

The Eve of Ruby's OHS

Well, here we go again... One year ago today Dan and I were preparing for Ruby's open heart surgery (OHS). I don't really know what to say on the subject. I'm sure I'll figure something out as I ramble along. Some families celebrate the anniversaries of their child's lifesaving surgery. Honestly I don't think we'll ever be one of those families. When I look back on that day and the days and nights surrounding it I mostly feel sick to my stomach. But I think I can suppress that feeling long enough to write down what we were doing one year ago to prepare for what was to come.

As I've alluded to before, I believed that Ruby would die during or after her surgery. Dan and I were obsessed with statistics before her OHS, even though we knew that they can not paint a fully accurate picture of what is to come. We looked up the stats for successful unifocalizations and ToF repairs from different hospitals and harassed the cardiology staff at CHOW enough to get some, albeit incorrect, stats for surgeries like Ruby's at our hospital. I knew that the success rate was so-so. I knew there was a very real chance she would die and I'm not a very optimistic person so...I chose to believe that she would. I think I wanted to be as prepared as possible for the worst, even though there really is no way to prepare for the death of your child.

In the days before her OHS Dan and I talked about what we should do with her things; all of the things in her room in the NICU I mean. We knew we would be "homeless" during her actual surgery and that if it was successful she would be moved to the CICU. But in the interum...what on Earth were we supposed to do with all of her stuff!? And have you seen the pics? She had a TON of stuff! We came to the conclusion we needed to unload it the day before her surgery and leave it in the car. That way if she died, we wouldn't have to go through the additionally painful process of removing it. Dan and I talked about this several times, once in front of a nurse who scolded us, saying, "Don't think about such things!" I told her, "We have to think about these things because she might die. How can we not?" This is our life, this is our reality. I have to think about it because I don't want to be going through my little girls books, toys, and clothing smelling her sweet smell and flashing back on all of our memories knowing that I would never get a chance to make any more with her.

So we did empty her room. We cleaned out my milk in the freezer. We erased as much of ourselves from that awful place as we could. And then we waited. I tried to numb myself like I did in those early days. I tried to remind myself that it was the right decision and that it was all worth it...that the pain she was about to endure was worth it. I didn't cry at all in those days. But I did try to think about the things I needed to do in case she died. I remember bringing in my camera from home to get better pictures of Ruby. I knew I would want at least one nice print that I could have for home. I also made my dad take a picture of Dan, Ruby, and me as a family. We didn't have any pictures of the three of us since her first days. Dan and I also tried to familiarize ourselves with what we would see after her operation. We looked at pictures of infants with their chests still open after surgery. During her pre-op we took a tour of the CICU with that sickeningly upbeat PA, who actually said things like "saw open her chest" with a twinkle in her eye and smile on her lips. We saw the tree of pumps, the lifeless bodies, the nervous parents, and simultaneously hoped and feared that we would get to that point.

Family Portrait

She had a cath a few weeks before the OHS. Not much had changed but Dan and I finally understood exactly what her heart looked like. She also had lots of blood work. Some of which couldn't be done because the staff at CHOW rarely have success in that department with our little girl. And can I say here that I HATE blood draws. I know we all do but watching your child go through that again and again and again and again...well you get the idea :( You know, one of the kindest souls we met in the NICU was the cleaning lady, whose name I probably shouldn't post here. She LOVED Ruby and if I could bring myself to take her back to that Hell she would be the only person I'd want to see. She used to sing to Ruby in her own language and Ruby would smile and talk back. It was wonderful to see. And when poor little Rubes was screaming in terror from all that blood work that sweet lady cried along with me outside her room. I'm so glad she was there to watch over Ruby when I wasn't.

I'd also like to paint a picture of Ruby's condition before her OHS. She required more and more O2 to maintain her sats. She was on 5 L of high flow O2 sating in the 60s and sometimes low 70s. She had rashes all over her body and face from her monitoring leads and the tape required to keep her cannula in place (she was an expert on removing it). She needed blood transfusions as well as the increase in O2 to keep her sats up. She was vented continuously and fed into her intestine 24 hours a day. She was tired all of the time. She was sweating profusely from her heart working so hard. She could barely hold her head up and was very weak. She was in heart failure. She needed the surgery soon or she would most certainly die. She was 3 1/2 months old. Dismal, huh?

Anyways, those were our days before her surgery. As for the actual eve we simply held Ruby, sang her to sleep, and left just a little later than usual.

Despite all that she's such a beauty!

Politics...sigh

I love Wisconsin but the truth is I feel betrayed by it's people right now. They have spoken and what they have said in their loudest voice is, "We are impatient. We want more money. We don't care about those in need. It's survival of the fittest." Did I hear that wrong? Someone please tell me I did.

In a few years will people take a good look at what will become of this state and have a change of heart? Perhaps they will notice that their beloved parks now have NO TRESSPASSING signs on them. That their once cherished lakes and forests will either be abandoned monuments to nature or worse gated communities to the wealthy. Or perhaps they will take note of the failing school system that will slowly have less and less money to pay for enriching and necessary programs like art, music, and heaven forbid...even gym! Maybe they will drive past the few are far between free clinics are be surprised by the waiting line of mothers, children, and the elderly that will certainly extend to a ridiculous length...they might even be in that line themselves. Will they fear leaving their homes when the crime rate skyrockets as the poor are denied the basic necessities for life? Maybe they will take their children on a walk to their local library only to find the doors locked and a FOR SALE sign posted for all to see. They might even catch a glimpse of my family whose uninsurable daughter will have easily hit her $5 million insurance cap scraping to get by despite the fact that my husband, by most standards, has a really good job. Everything has a cost. Is your proposed $100 tax cut really worth it?

I hope that these things do not come to pass. I hope that before any real "change" on this scale can occur, Wisconsin will peel back the layers of deception and placation to find what really lies at the heart of Scott Walker and his accessories. I hope that I am merely being dramatic. My heart aches with such hope. Because if I'm right, than the very things I love about this beautiful state will cease to exist and the world I grew up in will no longer be here for my daughter. And frankly that sucks.