I know it’s been a long time since I updated this site with information. Let’s chalk it up to just how active our little girl has become! We celebrate our little girl’s birthday on Wednesday and I think it’s important to look back at just how far she’s come.

As I was weighing my options for how to tell her story for the past year, we happened to have Katy’s IEP planning meeting come up on the schedule. While we were there (and this happens every year), we end up listening to story after story from her teachers and therapists about what Katy is up to at school. And that’s when it struck me: I wanted them to tell Katy’s story from their point of view.

So, below you’ll find my little girl’s ninth birthday video, as told by the people who have worked with her for as many as five years already. There’s many others that could tell their stories, as well; but, I need to keep some things for next years’ video!

Our journey as a special needs family has had amazing highs and astonishing lows. Through it all, I’ve experienced the joys of a family growing stronger together in the face of a true unknown with Katy’s chromosome deletion. Even with all of that strength, we are still faced daily with obstacles and emotions that we don’t show many – if any – people at all. In the interest of helping others understand what goes on in our lives every day, here are five things you should know about a – or rather about our – special needs family, at least through my eyes.

1. We’re ostracized.

Whether you realize it or not, we’re outsiders. We have an all-consuming fear that something will happen to our child because she can’t protect herself the way a “normal” child can. We worry that she can’t say “Stop” or “Don’t” – or that she won’t realize she should have said it until it’s too late. We worry that people simply won’t understand our child. We have seen the sideways glances and rolled eyes from strangers when our child does something they consider rude or disrespectful. We’ve been verbally accosted by strangers who feel we shouldn’t have used a handicap parking spot for our “normal” looking child before I can even pull the wheelchair out of the back. We’ve listened to parents at our children’s school complain about how our child is somehow holding their little boy back. We’ve dealt with the inconsiderate use of the word “retarded” from our children’s own friends to even one of our child’s doctors. And no matter how many well-meaning people try to help, we will still feel alone.

We end up by ourselves at parties, whether we have our little girl or not. If she’s with us, than we’re constantly watching her to make sure she’s okay. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above. If she’s not with us, then we’re worried that something will happen to her away from us. We don’t go out with our friends the way we used to because it’s too frightening to leave her with someone whom might not understand what she’s trying to say or to sign. Sometimes its even too hard to get your own family to understand just how stressed out you are.

2. We’re jealous.

Even with a family like ours where four wonderful kids help out every day, we can’t help but feel a tiny pang of jealousy every time a child younger than ours simply walks up to us. Or talks to us. Or runs past us on the way to ask someone for money.

Know what’s even worse? It makes us feel guilty as hell, because we’re so proud of everything our child has accomplished. This little girl has worked harder than any of our other children to accomplish everything she has been able to do – and we wish it wasn’t so hard. We hate that that little pang of jealousy hits us because this “normal” child in front of me didn’t ask for my little girl to have a chromosome deletion. This child doesn’t realize that when he talks to me, for a split second, I think “Why? Why did this happen to my child and not to you?” And then I have to put that thought as far away as possible because it’s not fair to that child or to my little girl.

If/When Katy reads this sometime in the future, I want her to know that we have never regretted a second with her. You made us become better parents and better people. You amaze us every day with every single accomplishment you have piled on top of accomplishment.

3. We’re scared.

We try to do everything we can to set our child up for success and we always worry that we’re not doing enough. Or we’re doing too much. Or we’re doing the wrong thing. Or we haven’t done enough research. Or we won’t be able to afford that. Or how will we be able to afford that? On a daily basis, we wonder whether the decisions we’re making today will improve or degrade her quality of life. And we do it knowing full well we’ll never know the answers to those questions until they arrive – for better or worse.

We constantly worry about money because everything involved with caring for a special needs child costs way, way more than it should.

We worry what will happen to our little girl when we’re gone. So we hire lawyers to draw up special needs trusts so that our child will be financially protected when we’re gone and won’t find herself fighting the same fights we handle now for assistance and benefits. Did I mention that we worry about money?

4. We’re good at hiding things / We’re not good at hiding things.

I am a deeply private person and became even more so after my daughter’s issues arose. I’ve rarely expressed my deepest feelings too anyone save my wife. And sometimes I haven’t been able to even do that. I internalize the problems we deal with and swallow them whole, because that’s what a strong father, husband – a strong man – does. What was it that the old deodorant commercial said: “Don’t ever let them see you sweat.” I have never wanted anyone to know just how terrified I have been. I’m not sure I want them to know now.

In this day and age, Facebook has become an unbelievable lifeline and community for my wife. She found an entire village of chromosome 6 and other special needs mothers that understood her pain and frustration. That community understood what was going on when she posted what was on her mind. To others, she just seemed rude.

For a private guy like me, it took a lot to start Katy’s blog and start to bring some of the emotion of our lives to the public. It has taken even more for me to start to try to become more active within the same online community that my wife finds such comfort in. This post is, by far, the most I’ve ever revealed about our circumstances. I’m still trying to decide if I’ll even hit the post button.

5. We’re stronger than you realize. / We’re more fragile than you realize.

We’ve had to deal with watching our child get stuck 26 times over two hours as doctors attempted to get an IV in her. We’ve given our little girl over to doctors seven times to perform some sort of surgical or medical procedure that involved general anesthesia – more than all our other children combined. We’ve waited in private agony for her to be returned to us each time, hoping for the best, but scared to death that something will go horribly wrong. We’ve had to develop incredibly tough skins dealing with red-tape corporations determined not to spend a dime more than they have to on my daughter, even if they’re legally obligated to do so. We’ve fought for what we thought was right and just even when it put us at odds with family and friends.

And we’ve broken down in each others’ arms. We’ve been hurt by seemingly innocuous remarks that wouldn’t have fazed us a day – even 10 minutes before – but for some reason cut through at that very moment. We’ve hurt each other when our actions haven’t lived up to our expectations.

We’re human.

So, for our friends and family, for future friends we haven’t had the pleasure of meeting yet, for strangers to us who are friends and family to a special needs family somewhere else in this vast (but ever smaller) world of ours: What can you do?

Strive to include. Work to understand. Go out of your way on occasion to help a special needs family out. Realize that the stress and the strain take their toll. We’re just trying our best to survive. If we’ve offended you with our words or our actions in one of these times, we apologize for our moments of weakness. Hopefully, someday, we can move forward together.

We do our best to make our family life look normal and to act like everything’s fine. And we wish people might see through that facade every once in a while and understand that we appreciate the slightest effort to make us feel… special.

This past weekend, Katy celebrated her sixth birthday. One of the things that sneaks up on you when you have a little one that can’t stand on her own is that you don’t get to see just how tall she is getting very often. Consequently, I guess, it’s just shocking to find that your little girl is now SIX.

Katy has done really well since her surgery and has made some significant strides in the strength in her legs – but I’m going to keep you hanging on that one for a day at least. Video is coming – I swear!

However, today is all about a birthday celebration. Katy could care less about presents on her birthday. New playdoh set, Katy! Eh. New books, Katy! Away! New toys, Katy! Katy? All she wants to do is blow out the candles. Again and Again. And again. 10 times in all. Check out the video below.

This weekend, Michele and I were truly honored to be asked to speak to a group of 5th and 6th graders about our experience as a family raising Katy. One of Michele’s clients had done an interview with us last summer and knew the story of Katy’s chromosome deletion. She asked us to tell the kids about acceptance and how Katy has helped changed everyone in our family.

I really had no idea what to expect; but I didn’t want to let my little girl down. I prepared a presentation complete with some of the videos you’ve seen on this site, and loaded it onto Michele’s iPad  thinking there’d probably only be 10-15 kids, tops. Oops. I was speaking to 70 kids.

I may not have had the size screen I needed, but I truly wanted to include video for this presentation. Katy is one of the most loving kids around – once she feels comfortable with someone. In a setting like we were going to be – even if it was only 10-15 kids – I knew she would be shy, worried even. And she was; but thankfully not for long.

So, I told these 70 kids and 10 or so adults our story. I told them (as best I could) about Katy’s chromosome deletion. I explained that chromosomes are like instructions for your body. And when part of chromosome goes missing, the body doesn’t have it’s full sheet of instructions anymore.

I told them about Katy’s issues. That she can’t walk (yet). And she can’t talk (yet). And that she’s had five surgeries already in her five and a half years on this earth. And I said (as if I was Katy), “So if I can’t walk.. and I can’t talk… I must lead a pretty boring life right? WRONG!”

And then I showed them pictures and video of Katy horse back riding, of Katy being pushed onto the field during starting line-ups at the Lindenwood Women’s Soccer Game, of Katy swimming, of Katy playing the piano, and of Katy with a mouth full of whip cream laughing her laugh.

I tried to show them that Katy was just a kid like all of them – once you got to know them. After I was done (I think I talked for about 40 minutes), I was expecting to get one or two questions from a couple of girls that thought Katy was cute. Imagine my shock when we were asked good, insightful question after question by boys, girls, parents, everyone. What made it so special for me was it told me they were interested in my little girl.

One of the older boys asked the toughest question of all: “If you were told tomorrow that doctors could cure Katy, would we do it?” I told him I couldn’t answer that. I want the best for Katy. That never changes. But answering “yes” to that question somehow seems like I’m admitting that I want my little girl to be different than she is, that I can’t accept her for who she is right now. I don’t know if that will make any sense to anybody out there.

All I know is that on the way home after our hour of time became closer to two, Maggie and Bryan talked about how different they would probably be if it wasn’t for Katy. They already believe they are better people because of her.  I truly believe I would not have started writing again if it wasn’t for this. Every day, I watch my little girl work so hard to do things that your average, every day kid just “knows” how to do. I watch her study other kids’ feet as if she’s trying to figure out just how they’ve all made them work. I watch her study her teachers’ faces as she tries to put out the same sounds from her mouth. I watch her oldest brothers taking her out to the trampoline or rolling a ball with her. I watch her face light up when they walk in the room.

And I pick her up every morning and put her down to bed every night knowing I couldn’t feel more blessed with my family than I already am.

Our thanks to Sharon Vermont and the Congregation Shaare Emeth for inviting us into your community. This was a very special day for us. I hope the kids got as much out of it as we did.

On Tuesday, December 28, Katy had her right heel cord lengthened at Shriner’s Hospital here in St. Louis.

She has been in a cast just below her knee ever since. And, once again, our concerns on how she would react to a cast, on how she would deal with the pain, on pretty much everything, turned out to be pretty much nothing. We gave her pain pills the day of the surgery and once more the next day – not necessarily because she needed them even, but because we didn’t want her to have any pain. With Katy, we have never been able to get her to understand what exactly we mean when we ask her “Does something hurt?” It just doesn’t really register with her. By the end of the second day, though, we didn’t seen one sign that she needed another pain pill. And we haven’t seen a sign since.

Within three days, she had stopped noticing the cast and went right back to getting into everything around the house again. The only difference now, at least, is we here the “Clump, clump, clump” as she puts the cast down while she’s scooting around. The only true problem we have right now is that the cast slides out from underneath her when she’s trying to put weight on it.

She’ll be in this cast through Jan. 17 and then the doctors will decide if she needs to be in the cast for another three weeks. (I’m inclined to believe that she will be considering they told us six weeks in a cast when we first started going down this road.)

She is truly an amazing little girl.

Throughout this whole experience, one thing will forever stand out for us. After we brought her home from the hospital, she slept for much of the time and ate practically nothing. So, around 6:30 pm, we took her out for ice cream. I think I’ve talked on this website before about Katy’s absolute intolerance for medicine. ANY taste whatsoever and she will gag the entire thing up. With no true idea of whether or not she was in pain, we crushed her medication up and put it in the ice cream. She caught on pretty quickly after a few bites, but we did get pill inside of her – and we were in for one of the funniest nights with her of our lives. Our little girl has never been so talkative. She tried to repeat anything anyone would say – far more than she usually does. By the time we got back home, Katy was yelling her version of “That’s Sweet, Dude!”, and would then dissolve into giggles for the next 10 seconds. Repeat.

Ah, yes, the wonders of medicine.

I read a post this week about how some people get the chills when they listen to certain musical pieces. I’m one of those people. What’s interesting about this to me is that I never gave a thought that some people didn’t get chills when they listened to special musical numbers. Never crossed my mind. Makes you wonder what things other people experience that you don’t.

I wonder constantly how Katy sees the world. Does her chromosome deletion change something for her? She loves music of all forms. Does she get the chills sometimes over a beautiful song? Does music make some special connection in her brain? Is that why music therapy has worked so well for her?

Does her heart soar when she sees someone or something she loves?

Does her laughter feel different than mine?

I don’t know. Will I ever know how her chromosome deletion truly affects how she sees the world and how she experiences it? I hope so.

What I do know is that this week I’ve had a song stuck in my head – Israel Kamakawiwo’ole’s Somewhere Over the Rainbow. Tonight, as I was sitting down to tell you about Katy’s upcoming surgery (I’ll get to it in a second, I promise), I put that song on. For me, certain songs have more than the power to just give me chills. These pieces are like a pure emotion sent straight into a lump in my throat. So, this song comes on and instead of the problems I’m facing and have faced over the past week, the past month, the past year, I picture my family. I picture my kids. And, at least for a little while, I can hold on to a photograph in my head of how my world might be. I don’t know if we’ll ever get there, but if I can picture it – if I can still see it there in front of me – it’s nice some times to think that the dreams that you dare to dream really do come true.

Back in real life, Monday was “go visit your neighborhood Shriner’s Hospital and decide on surgery day” here at the Oswald house. We’ve decided to go with Shriner’s for Katy’s right ankle/foot. They’ve been so much better since October about taking the time to go over everything with me concerning Katy’s condition and how it relates to her chromosome deletion. I hope with all my heart that it is the right decision. Katy goes in on Tuesday, December 28 for heel cord lengthening. She’ll be in a bright pink cast from her foot up to just below her knee. And hopefully, in six weeks, my little girl will be able to put weight on her right foot for the first time in more than six months.

I can only dare to dream.

I took Katy to see her urologist this week for her final follow-up after her March 31 surgery for reflux. Thankfully, everything seems to be functioning correctly – for now. So, no more tests involving filling Katy’s bladder with 3 liters of liquid and x-raying her for a while at least. (Thank God.)

But there’s another surgery on the horizon now. As you’ve heard me talk about, we’re still trying to decide what procedure we’re going to do on Katy’s right leg/ankle. We meet tomorrow again with the doctors at Shriner’s in a meeting I requested to go over my reservations. I’ve changed a lot in Katy’s five and a half year’s on this earth, but probably no more drastic difference can be found than in the way I deal with doctors now. Simply put, my trust that doctors automatically know what’s best for my child disappeared a long time ago. We’ve gotten five opinions on this issue – every one had something different to say. So now, I go back and do it all over again until I can at least satisfy my terrified parental brain that I’ve done pretty much everything I can to make the best choice possible for Katy. The problem is this: I know more about my child’s condition than any doctor does at this point. If I won’t take the time to make sure this is right (or as right as it can be), who is? So, one more time to Shriner’s and we’ll see what procedure we’ll decide on.

We’ve covered the surgeries and the bladder. What the heck do peanuts have to do with anything? Well, I walked into Katy’s room a few nights ago after I was getting her medicine ready and I found her rolling back and forth over her peanut therapy ball. This was a new one for me. I have no idea if they’ve been working on something like this in school or not. Either way, it’s wonderful to see her being active on her own without a therapist directing her to do something.

Take a look:

Like every family dealing with a child with special needs, we have our good days and we have our bad days. We also have days like today that feature both.

We ended up at the cell phone store today, trying to get two phones fixed/replaced. For whatever reason, today was the day for Katy to just absolutely lose it at the sound of a door shutting. I honestly never saw it coming. We had been in the store for 10 minutes and she was doing great playing with her iPad.

And then the guy let the door slam.

My afternoon changed in an instant. One minute she was talking to me and the next she had been reduced to pure tears, to screams, to being uncontrollably upset. We haven’t had a meltdown like this in over a year. It took us a half an hour, maybe 45 minutes, to calm her down. Her sensitivity to these sounds had seemed to be getting so much better – until today. I just hope she was worn out today or something else was bugging her.

So that was the bad. Thankfully, we also got a taste of the good tonight after dinner. Katy had her first experience with aerosol whip cream.

I apologize this video is so long. I just couldn’t figure out where to cut anything out. If you can watch this without laughing, I have to wonder if you have any sense of humor whatsoever.

Enjoy!