The Truth

The Truth: Life is a giant pile of shit. Life is hard and messy and so damn complicated I feel like throwing up most days. Life is survival. We like to pretend we are separate from the rest of nature but our lives are simple. We fight every day for our right to breath and exist on this planet. Sometimes we get eaten, sometimes just maimed, and sometimes we escape death. Mostly life sucks.

So why, oh why, do we do it? Why do we wake up everyday and go to work, or clean the house, or try to teach our children that the world is a magical place? Because despite all of the hardships life is wondrous too. The will to survive, thrive, and ultimately procreate is so strong that we are able to overlook most of the horrible things that surround us and drown in moments of pure joy. We take pause to witness the look on our children's faces when they learn something new about the world and all of the misery and pain fades.

That is why I move in the morning. That is what keeps me going. Because most moments all I want to do is die. Most moments I hate my life so much that I want to carve into my own skin to break out of the panic I feel. Most moments I have to fight for every breath. But the moments that are brilliant shine so brightly that the scary thoughts are pushed aside. I lock them in a tiny box that sits somewhere between my throat and stomach and tell them to back the Hell off. And I try to dwell on the good. I look in my daughter's eyes and know that all of the pain is worth something.

She deserves so much better than I can give. But I will keep trying. Even if it destroys me and even if it's not enough. Because I am a mother.

Taking Risks

As I navigate the waters of parenting a child with "exceptional" needs I find myself faced with all sorts of decisions I had never anticipated. Perhaps that's not entirely true--most of the crossings are the same, but my concerns are a bit different...more exaggerated. I paddle along in my parental canoe and down one fork in the river lies a safer calmer path. Down the other lies rough and exciting waters. Other paddlers in other canoes come to this break in the river constantly, but my boat is...different. It is not "meant" for the rough waters in the same way the others are. It is more sensitive to the bumps and turns that the more thrilling path entails. Ok, so I know this analogy is cliche but it works ;)

I often envision this theoretical journey as I make choices in Ruby's care. I am now fairly in-tune with the special needs community and I find it easy to place parents of such children in two categories. Now I'm not saying that there are only two types of ways to parent a child with special needs. Every parent is unique, and most obviously, every child and their set of concerns is unique...hence the term "special" or "exceptional" or whatever label gets placed on children who don't fit perfectly in the box with the big 'ol NORMAL sticker on it. What I mean to say, is that I see many parents who approach their child's differences and medical concerns with extreme caution--with what amounts to an astounding degree of diligence, care, and protection. And I see many other parents who seem to risk a bit more in order to allow their child more freedom...the same freedom that "normal" children are awarded with less deliberation. (My there are a lot of quotes in this post!)

Does that make any sense? Calm safe waters=exceptional diligence and protection. Exciting rapids=risk for the sake of freedom. Before I go any further I don't want to come off as denigrating either style...but I do want to work through my own thoughts on why I often choose to paddle down those rough waters with Ruby by my side.

About a week after Ruby was born it became clear how different her life was going to be from the average child. And I remember vowing to my mother that I would do everything in my power to give her the most normal life possible. Upon reflection I think I should have said the most fulfilling life possible. I certainly hope Ruby does not have a normal life, I hope her life is exceptional! I hope it is full of joy and excitement. I hope that she can look back on her childhood as if everyday was an adventure...just as I do because that's what my mother gave me. And to accomplish this I feel as though I sometimes put her at risk.

Ruby gets sick more than many children, and when she gets sick it certainly hits her harder than most kids. Part of this is due to her chromosomal deletion and her T-Cell count being on the "lower end of the normal range" as immunology put it. It also has to do with the fact that her pulmonary arteries, and therefore lung profusion, will never be as large or function as well as a person with a normal anatomy. But I refuse to deny her the same childhood experiences that so many other children have. I take her to museums, the zoo, and playgrounds. She interacts with other children constantly, and some of them are fighting colds when we see them. Hell, I even let her play in one of those disgusting ball pits at a Dairy Queen! We still take more precautions than some parents. Hand sanitizer and wipes are always close at hand. And I never knowingly expose her to people with serious illnesses. But I am aware that we do things that some parents with a child of similar challenges as Ruby would deem far to risky.

So why do it? Because life is worth living. Her life is worth LIVING! Ruby's life needs to contain a certain amount of danger if it is going to be worth anything. She has ALREADY paid in more blood and pain than most adults can comprehend for her chance at life. And so she deserves the right to risk a bit more in order to receive all that her life has to offer. As her mother I am going to see that she can take those risks. And I will be there to minimize them. And I will be there to nurse her when she is sick. And I will be there to console her when things turn out badly. But I will also be the one to see that nothing-less-than-brilliant shine in her eye when she experiences a moment of pure joy, learning, excitement, or accomplishment. Because that my friends is a worthy life. That is a life I can be proud to give her...a life she can be proud she risked.

Camping, Signing, and Social Skills

Mauthe Lake was wonderful. I'm happy to report that Ruby is a natural camper. She was in love. The trees, the hikes, the animals, the tent...she couldn't get enough of it. This, of course, meant to world to me because as a parent you can only hope that your children will find joy in the things closest to your heart, and to have that hope realized was wonderful. I have always felt that the only time I am able to truly let go is when I am camping. Time ceases to exist. The biggest priorities are eating, sleeping, hiking, and reading. Being in nature is certainly revitalizing, and it would appear that Ruby feels the same way.

Anywho...we are back home now and settling back into the rhythm of our life. And although I long for the lake and the woods I am glad to be home. I really missed my friends and it feels great to be around them again. They love me and Ruby unconditionally and that kind of love is hard to come by.

In other news: Ruby is signing more than ever. I can't wait until she speaks, but for now the signs have alleviated much of the frustration she has been feeling due to her lack of communication skills. Every morning she wakes up and the first thing she does is to run through every sign she knows as Dan and I narrate for her. She is clearly so happy to be understood. Her speech therapist reiterated what a smart child Ruby is. She has said that her receptive language skills are at or above age level...it's just the expressive language that has got her down.

Ruby has also been doing fantastic socially. She is far more comfortable with strangers as long as she is not in an entirely new setting/situation. One thing we have all noticed is that she is partial to men. My thinking behind this is that most of the nurses that Ruby has encountered are women. And (sorry to say it) but the nurses are the ones who do all of the "bad" things to her. The few men she has encountered in the medical system are doctors and their role from Ruby's perspective is to pop in a room after she's been molested by a nurse, talk to mom for 15 minutes, and pop out again. I assume this is why she is so much quicker to warm to men.

I am so worried that all of the progress that she has made socially will be destroyed in the next few weeks. We have a barrage of appointments coming up in June, with an ECHO in two weeks :/ Although it is non-invasive it is frightening for Ruby and that is just plain awful. Anything that causes my kiddo discomfort or fear is bad in my book...even though I know it is necessary. I'll be keeping my fingers crossed for everything to go smoothly, and for a good report.

Well, I had better go because I can hear Ruby fighting off sleep as Dan is trying to put her to bed. I'm guessing he'll want to be tagged out soon ;)