Welcome friends and family!

We created this blog so that everyone near and dear to our hearts will be able to connect with us from around the globe, hear all about Quentin and the journey that we like to call "parenthood"!

Wednesday, October 12, 2011

Trying new things (part két)

"Part Két?" You ask.

Két translated in Hungarian means two.

You might be thinking I've gone off of the deep end now, but I haven't. But, still your wondering...Hungarian? Great question, and one which I intend on answering! I'm going to do this in a in a roundabout way, but we'll get there, trust me.

I spoke a post ago about trying new things. Well, this is all apart of trying new things. Yippee! So, first we started off by making new friends. Then we decided to step outside of our comfort zone and try some things that we normally would not have (ie. running a 5K). Now we are adding something new to our list. By this point your probably thinking that this doesn't really seem like it has anything to do with Hungarian. You would be wrong. But I'm not quite there. Not yet. So just hold on to your knickers (did I just say that? Really? I think that I just aged about 50 years).

In our world (the world of parents of children with special needs, that is), there are a lot of different therapies that a family might choose to explore for their children. Some people might take the traditional route (Physical Therapy, Occupational Therapy, Speech Therapy...blah, blah, blah), some people might try a few different things along with the traditional therapies and then, there are those that try everything. And when I say everything, I mean EVERYTHING. There are some people that just don't stop. That is not us. We are much more of the traditionalist type. Playing it safe, doing what the doctor's tell us. I have to admit that although I will fight tooth and nail for my child, we pretty much stay the course when it comes to therapy and medications and such. We're not really into branching out and trying new things. We kind of go with the flow and don't stray too far outside of the lines. We're the kids that color neatly. Very neatly.

I feel like playing it safe makes me feel like less of an outcast. Dealing with Quentin's diagnosis was very difficult and it took me, what felt like, forever to start feeling "okay" again. I mean, I'm in it and I'm not going to break down anymore, but I do have times where I feel like we are on an island. Me, Segis and Quentin. And, without sounding judgmental about others choices, I chose to stay away from all of the multitudes of different treatments and therapies and so forth because I tend to feel like it's more about hoping for things to change or "get better" instead of dealing with our reality. And for me I need to be realistic and not spend my time hoping because otherwise I'm going to get lost in la la land and that's not good for anyone. Especially Quentin. I know that he needs therapy to keep his joints and muscles and everything from giving him arthritis and he needs his brain to be stimulated, but how much is too much? What treatments are really going to help HIM, and which treatments are going to make ME feel better and hopeful. You know, or maybe you don't, what I mean? Like, what treatment is going to pull him out of that dark hole he's in and have him walking, talking and feeding himself? Again. Reality. There isn't one. So I stopped worrying about all of that stuff and just focused on the basics. What is our reality? What do the doctor's think will benefit our son the most? My reality is that my son has Cerebral Palsy and at this time there is nothing that can change that. It is not a disease that they are going to find a medication for and because of the controversy over stem cell therapy and stem cell research we may never know whether or not it will actually be a viable option or "cure", so to speak, for people with brain injuries, at least maybe not in our lifetime. So, I've been trying not to hope and I trying not to wish. That's the honest truth (which I want this blog to be). Sad. But true. I've seen other children that were less "affected" than our son being able to thrive with different sorts of therapies and I had long given up on those options being beneficial for our son, but I think that maybe we were just selling him short. I learned awhile ago that doctor's don't know everything and they don't REALLY know our son, not like we do, and now I'm starting to think that maybe going by the book isn't exactly what's right for our son. Maybe, just maybe, we should try stepping out of our comfort zone just a little and allowing him the chance to show us what he CAN do instead of us deciding that he can't do it without even trying. I live in reality, but I'm feeling like maybe hope should be a part of that reality. Maybe hoping for small things, just the tiniest of things to happen isn't going to wreck my world after all.

And so here we are. We have come to the point of the post and all of the Hungarian mumbo jumbo. FINALLY! WOO HOO! Now let's talk about the "new thing" that we are trying. This isn't some radical therapy, it isn't so far outside of the box that you are going to think that I've lost my mind. It's simple. It's actually not too different than traditional therapy. Maybe that's why we like it so much. We're coloring outside of the lines, but just slightly. Baby steps, people. Baby steps. So, In Tucson and around the world actually, there is a program called Conductive Education. I don't just want to call it therapy, but it is therapy with a touch of something better. It was founded by a Hungarian man named Andras Pëto in 1984 in Budapest, Hungary. Did you make the connection yet? I know, now your thinking, all that build up about speaking Hungarian and that was it? Yup. That was it. But it's pretty cool. The therapy, that is. Again, It's not so outside of the box that it differs greatly from traditional therapy, but the program really focuses on Quentin "helping" in his therapy sessions versus therapy just "happening" to him. The idea is that the patient or participant is actually involved in the therapy and that they are a part of the process (there is a little more to it than that, so if you are interested check out http://www.swgaitway.org for more information). That's what we really like about it. I will be posting about Quentin's first session next, but I have to say quickly that it was cool to see him being asked to participate during his therapy. It just felt like he was being treated like any other kiddo out there and that was special, and not in the "special needs" kind of way. Needless to say, I'm so glad that we are stepping out. I really think that Quentin will be able to benefit from this therapy and even though it's not about producing a miracle but it is something that will help him in the long run and will strengthen the abilities that he has and who knows maybe bring out something all-together unexpected. See? There I go...wishin' and a hopin'!

I guess you could say that we are really starting to learn how to focus our attention on what Quentin CAN do right now and also pushing the boundaries of what he can do, now and in the future, to encompass those things that may have been outside of those lines that we had confined him to previously. It feels liberating and exciting and scary all at once. What if this doesn't really change anything? Our biggest fear. The thing that sometimes holds us back from taking a step off the beaten path. Really, only time will tell. It's a leap of faith. And, it can't hurt, right? Well, it can't hurt him. But me? I'm fragile. You might think that it would be the other way around, but our kiddo is tough. Probably tougher than his dad and I put together. It's not easy, but I no longer want our family to be defined by what we CANNOT do, but what we CAN do. It's important. It's life altering. In the simplest way possible it's making us better. Our journey is an ever winding road that, on more than one occasion, will cause us to take pause and chose a new path. We aren't perfect and it's okay (or at least I try to tell myself that) but trying new things is thrilling. Thanks to everyone who has been supporting our decision to explore new territory, it means more than you will ever know.

This post took me forever to write, so if it seems a little disjointed, I apologize.

Tuesday, September 20, 2011

Quentin's First My Team Triumph 5K Race

As I think about the day of the race, it brings tears to my eyes. Tears of joy, that is. What an amazing experience.

Let's start at the beginning. Waking up at 4:45 AM. Yes, you read this correctly. I said 4:45 AM. I know, it's so unlike me, but for this I would have done anything.

It reminded me a little of the old days getting ready for a volleyball tournament actually. The night before we prepared as if going into battle. This was serious business and we didn't want to be caught off guard. We needed to be ready for anything! So, we laid out our red shirts and pinned the numbers on, just like we were told. We made sure that we had our clothes, visors, socks and shoes ready for the morning. We even put Quentin to sleep in his "jogging" pants (I used to do that too)! We packed our bags with anything and everything that I could think of because we just couldn't leave anything to chance. Segis was a little stressed since we only had one alarm to rely on and he knows me and the snooze button tend to be best friends, but we did it. And here is the proof!

"Captain" Q with his biggest supporters, Mommy and Daddy

We were all given red shirts to wear to support our teams (I know all of you CAL fans are saying, "What? How could you?" and probably would have given a good "Take off that red shirt" shout, but what's a mom to do?! Plus, Segis is a UNLV grad and he likes red, so I let it slide). There were so many people there and it felt really awesome to pull up in our car and see the other "Captains", "Angels" and volunteers ready to go in their red shirts in support of My Team Triumph-Southern Arizona. Since we actually arrived on time (shocker, I know) we were there before any of the kids were able to get settled into their chairs and I wish that we had a picture of that because it was a really special moment for me to see that. It was special because I know how hard everyone worked to raise the money that was needed to get the chairs from the Michigan chapter to Tucson. It was also very special because it reminded me of how loved our children are; Our family and friends so generously gave their hard earned dollars so that we could be there that morning participating in this incredible event. They gave so that we could give other people the opportunity to participate in events like this for years and years to come. The chairs to me represented a sense of community, of coming together, supporting and understanding without judgement and I am still in awe. Thinking about it today brings great joy to my heart. I am forever grateful to all of my loved ones, not only for your monetary support, but for your emotional support and encouragement.

Quentin had FIVE "Angels" other than Segis and I (incredible support, right?). We would like to take a moment to introduce you to them and send out a special thanks to all of them. So, without further ado, I'd like to first introduce...

Sue and Annie Connell, two of our tenants that participated. So happy that they came out to support us and the cause!

Ben and Ashley (last name unknown...ooops!). Ashley is a Speech Therapist and Ben, her husband, is a true competitor. He and Ashley, who by the way, used to run cross country in high school, ended up pushing Quentin A LOT. They were amazing and I can't say enough good things about them!

And last, but certainly not least, Lucy Barraza. We hit it off immediately and Lucy was outstanding in her commitment to our team, as well as the cause...she is looking forward to the next event already!
photo courtesy of Lucy Barraza

Although we did train some, I was unsure of what I was getting myself into and honestly I entered into this race with great trepidation, but overall the experience made up for the fact that I didn't finish as well as I would have liked. We crossed the finish line at 43:05, not too shabby for our first 5K, but I really didn't push Quentin very much throughout the race because the race alone was pretty exhausting without the challenge of adding the weight of Quentin and the chair. That my friends, was where Ben and Ashley came in and rocked it out. I'd like to say that it was their youth that gave them such energy, but I think it's just their personalities. They were so encouraging and supportive. They never gave it a second thought to helping push Quentin and I think they actually enjoyed it. It was as if they were out taking a morning stroll (my face probably told a very different story). They were checking in with Quentin every few kilometers making sure that he was okay, which I greatly appreciated and which made me realize that he was in very capable and caring hands. They probably were honestly the only reason I didn't walk anymore than I did. They were easygoing and made running very relaxing and fun, which I never thought it could be, and again I am very thankful to them.

When we got close to the end Ben relinquished the reigns back over to me to finish out the race. That's us coming to the finish! I was ready to quit at that moment and start walking, but the cheering was infectious and gave me the boost that I needed to complete the race. Crossing the finish line was a sweet moment...very surreal.

Quentin handled the race like a true professional racer would. He didn't cry at all during the race, he was starving and pretty mad after the race, but I'm glad that he made it through the whole thing without an episode. I don't know if he was in shock the entire time or if he really enjoyed it, I'd like to believe it was the latter!

I know that I've been talking about meeting new people and making new friends lately, so I thought that I would share a picture of our little group so that you all can finally put faces with names. It was a really hectic day, so not everyone is included, but most of us are here and a few extras even!

From Left to Right: Segis, Alicia, Quentin; Kevin, Zach (my adorable red headed buddy) & Patricia Jordan; Christian (the coolest kiddo in our bunch...typically sporting shades), Lola & Shauna Quintero; at the end is Lucas (Quentin's blond haired, blue eyed brother...same curls, I love it!) and Steve King.

Here are some closer shots:
Denise & Lucas King
photo courtesy of Lucy Barraza
Shauna & Christian (with shades) Quintero
photo courtesy of Lucy Barraza

Couldn't you just eat these kids up?! Well, I could. I have grown to adore them all (and their parents too) in a really short period of time!

I could go on and on about the experience and what it meant, but I'll try and wrap it up. Thank you so much to Steve & Denise King for providing us with the opportunity to have this experience with our kiddos and for bringing this event to Tucson. They are pretty amazing people and it's a blessing to know them. Also, again I want to thank everyone that contributed (we raised over $1,000.00...amazing!), the list is long, so I will send you your thanks individually! A big thanks to my hubby too, for being so supportive!

"Captain" Q! The reason why we do what we do!
photo courtesy of Lucy Barraza

P.S. On a not so side note, I have to say, with much regret, that I unknowingly overlooked my husband's desire to run in the event but I do appreciate that he was a total champion and was our cheerleader and picture taker throughout the event. I think that for the next event I will take a step back and allow him to have his own experience with Quentin. Undoubtedly he will enjoy being able to have that time to bond with Quentin in a way that only he will understand and I look forward to that for him. Segis is already looking forward to beating my time, so we are looking for a jogging stroller in order for him to train for the next event!!!

Wednesday, August 24, 2011

Trying new things

I'm branching out. "What do you mean?", you ask. I mean, I'm trying new things. Which in turn means, Quentin is trying new things. Yes, I figured since this is his blog I'd talk a little about him today! So, we went bowling. Crazy, I know. It was actually an eye opening experience for me. I felt like if I could go to the bowling alley and they had equipment that made bowling handicap accessible, than there has to be so much more out there for us to explore. Although I am somewhat of a people person, I don't usually get involved with the community and get involved with organizations supporting special needs like I should. So, I decided (after bowling) that I wanted to try something different. I needed to get us out of this rut, because we are honestly stuck in a rut. I don't love Tucson, but I have to find a way to get my child out of the house. So, I am doing just that.

Awhile back I saw a story on the news and then through an email that was sent to me with a video on youtube about a man that competed in triathlons with his son with cerebral palsy. The man's name is Dick Hoyt and his son is Rick. You have to watch the video (grab your tissue), which you can find on MyTeamTriumph.com (check out the southern arizona chapter website), to fully get the understanding of what I'm trying to explain. He wanted to allow his son to experience everything out of life and because his son couldn't run, he ran, because he couldn't swim, he swam, you get my drift...AMAZING!

Now to get to the point. Some of my new found friends have started a chapter of that same organization here in Tucson! How great is that? These people are truly fantastic. Anywho, Quentin and I are going to race. It doesn't sound like anything that I would do, but I decided to step outside of the box and be present for my son and to expand his horizons. Quentin will be a "captain" and I will be an "angel". The "angel's" get to push the "captain's" for the 5K run/walk. I can honestly say that I'm nervous (even though I can walk) and excited already and the event isn't even until the 17th.

It never ceases to amaze me what people are capable of in the name of their children. I hope to learn many new things from all of the great people in the special needs community here in Tucson...they are truly "angels"!

Friday, July 29, 2011

Just a thought...or two!!!

Some days I wonder what it would be like if I did not have a child.

Some days I wonder what it would be like if I did not have a child with special needs.

Some days I feel like the train I am on is more like a merry-go-round going nowhere, slowly.

Some days I feel like the dysfunction is enough to drive me insane, literally.

Then there are the days when:

I hear a new noise coming out of Quentin when I thought there were no new noises.

I hear Quentin laugh and it's one of those belly busting giggles that make me laugh.

I feel like being a mom is the most important thing that I will ever do in my life.

I feel like being Quentin's mom is the most rewarding experience I will ever have in my life.

So today I sit back and smile at the good that has come into my life and craziness that I endure and hope that tomorrow will bring the same, but maybe with a little less crazy!

Wednesday, July 13, 2011

My little boy turns six today!

I have typed this over and over again and still find it hard to write the right words today. There is so much I want to say, but how? I truly cannot believe that my baby boy is turning six today. It seems like yesterday we were welcoming him into the world. I have so many emotions right now and I'm not sure that I want to share them all, so I'll keep it short and sweet.

On this day six years ago our lives were changed forever, and as I sit here and write I can no longer hold back the tears that flow easily and freely remembering the day so vividly. So for fear that I won't be able to put myself back together again if I continue, I'll say only this..."my cup runneth over".

Dear monkey,

I'll love you forever!



Tuesday, June 28, 2011

Weight, weight, weight!

I feel as though this could be the topic of discussion everyday, but once again weight is on my mind. Quentin's weight, to be exact. We had an appointment with the nutritionist a week ago. One of those appointments that takes me an hour to prepare for, you know: waking Quentin, dressing him, feeding him, giving him medicine, getting him and his chair in the car, making sure that I don't look completely hideous, oh yeah and brushing our teeth, schlepping the two of us fifteen minutes across town, getting the chair off of the car and getting Quentin into it and finally arriving just on time for our appointment (or a few minutes late, but whose keeping track of that anyway). The appointment which we have every three to four months that consists of weighing Quentin and inevitably not being able to remember where the nutritionist wrote down the weight of Quentin's chair on the previous appointment, so of course we must go through the whole process again. The appointment in which we discuss how to add calories to Quentin's diet, the same ones that we discussed just three months ago, of course. The appointment that should last for ten minutes but takes at least a half an hour. The appointment that just feels like a waste of time, but makes them feel like we are being good parents by allowing them to check up on us and assure that we are following their recommendations.

So, I know you must be saying to yourself right now, "tell me how you really feel Alicia"! After all of this rambling on, I am just happy to report that Quentin is now almost a complete 37 lbs. We have increased his weight steadily and consistently and it feels amazing to know that even though, yes, we do use the supplements that they give us; No, we do not use them in every meal, every day because there are just too many things happening in any given day to remember and to do every single thing that we are "supposed" to be doing feels downright impossible. Every year I tell myself that I am going to create a daily calendar for Quentin so that I can make sure that I get everything done, but every year it gets pushed to the back burner and never gets done. As I sit here typing I am thinking of how I can set up the schedule and that I really should put that darn calendar together!!! But, right now at this moment in time I just feel so happy that he is on track (5th percentile..woo hoo) and that they aren't going to badger me again for another four months.

Just a side note. We had a play date a few Saturday's ago and it was so much fun. I met a new mommy Denise and her little boy Lucas who has beautiful blonde curly hair and blue eyes (he also has CP). Denise was amazing. As soon as we got to our host's home, she came over to Quentin and had him interacting with the other boys, she was stretching him and sitting with him. It felt so nice to be greeted in a way that was to all of us very "normal". Sometimes I feel myself worrying about where I'm going and how people are going to react to Quentin and his differences and on that day I really felt none of those typical apprehensions and it was really nice and relaxing. So I am happy to say that my new group of mommies is amazing and that I look forward to our next outing and sharing time with their kiddos (who are as wonderful as their moms are)!

Tuesday, June 7, 2011

Our new respite worker

So they say that summer isn't going to begin until June 21st, but I think that someone forgot to tell Arizona that. We have already begun to reach the wonderful triple digit weather here and I'm dreading the days when it's even hotter. I know that was off the subject, but I have to mention to all of my friends and family that live in beautiful CA (can't forget the lucky Hawaii residents either) that while you are living in bliss in your 85 degree beach weather, we are slowly melting away.

I know that I started this post with something more important to say. Now where was I? Oh yeah, we now have respite worker #2. Her name is Nicole and she is a 20-something pre-med student from Phoenix currently attending U of A. How lucky are we? She made her debut this past Saturday and so we stayed home for the first hour and a half to allow her to get comfortable, at least I told myself it was for her benefit, and then we went to dinner for a few hours and came back so that I could show her the bedtime routine. She couldn't get him to eat, poor thing, so she was holding him in his favorite position, head resting on the lady pillows, when we got home (he's such a man)! I think that she will definitely be ready to take on the full five hours next time since she got to see the whole routine, but we'll just have to see how I feel.

We have actually started to do many more things now that we have respite. Although most of it has to do with food, we are enjoying ourselves and it feels good to know that we have two very capable individuals helping us out. Now we are able to do something every Saturday night (5PM to 10PM) just the two of us and it's a nice change of pace to get out of our cramped space.

Our new friends have created a facebook page dedicated to Tucson families with children with cerebral palsy. I think that will probably open us up to meeting more families and for me more women to interact with. I still miss my girlfriends, but I enjoy making new friends. There is a playgroup date this Saturday and I'm excited that Quentin will be able to have some new friends.

There is a lot of things happening this summer, so I'll be in touch! Love you all.