Friday, November 30, 2007

It's the most wonderful time of the year

I'm sitting here listening to Christmas music, Mark is baking cookies (yes, Mark is doing the baking) and Eric and Jack are watching "Elf". It's been raining all day, which is very unusual for us, but adds to the "Christmasy" atmosphere. We've got our outdoor lights and decorations up (but not our tree yet -- we get a real tree, and it's too early yet). I just LOVE this time of year!

We have no plans this weekend ... I just want to sleep in, lounge around and do nothing for at least one day. Think that will happen? Me neither.

Eric and school are like water and oil and it's just not working out. Eric morphs into this kid I don't recognize when he is at school and I can't take anymore phone calls and emails. So ........ we will be moving him after Christmas break to the self-contained gifted Kindergarten class. If his behavior continues to be an issue ... well, I'll start investigating military schools.

My sweet Jack had a wonderful week. We are rounding the corner on closing out the year without having to step one foot inside a hospital and not having to be on antibiotics once for a respiratory infection. It doesn't get any better than that! (Hopefully, I haven't spoken too soon).

Wishing you all a great weekend filled with holiday cheer.


Monday, November 26, 2007

Jack Update

Note to Jen in Texas - we moved from Phoenix to St. Louis in 1996 so Hilary could attend CID/The Moog School. We moved back to Phoenix in 2002. If private insurance doesn't pay for the device, our Department of Developmental Disabilities will - however, then they own the system - not us, which I don't like. Our private insurance is typically very good and should cover this device. Thanks for your input though, it's much appreciated.


Jack tried out the eye response system from Eye Tech today. This system is so much easier than the other system to calibrate Jack's eyes and you only have to calibrate it once, not every time you use it (unlike the other system). Hopefully our insurance company won't "choke" at the $12,000 price tag! Here is a video clip of him using the system. His eyes are moving the cursor and, as you can see, he is all over the place. It will take awhile for him to learn to stay focused long enough to make a choice - but everyone feels confident that Jack will figure it out and do great things with the system. What was so awesome was hearing how excited Jack was to make something work with his eyes . . . you can hear his gleeful voice in the video.

We are two weeks post radiation and the results so far have been negligible. I emailed Jack's neurologist asking how radiation that is powerful enough to kill cancer can't stop the saliva from flowing. He told me not to give up yet, that he has seen it take between 4 and 6 weeks for maximum results. So we wait and hope for tangible results. Just another lesson in patience . . .

If things go well, the remainder of this week should be uneventful and quiet. May you all have a peaceful week.


Wednesday, November 21, 2007

Happy Thanksgiving

Thank you to all our friends who follow Jack's journey (and then some). Your friendship, words of support, care and concern mean more to us than you will ever know. May you all have a happy and healthy Thanksgiving surrounded by the love of family and friends.

and . . .

Remember that a little love goes a long way.
Remember that a lot... goes forever.
Remember that friendship is a wise investment.
Life's treasures are people... together.
Realize that it's never too late.
Do ordinary things in an extraordinary way.
Have health and hope and happiness.
Take the time to wish upon a star.
And don't ever forget... for even a day...
How very special you are.

~Douglas Pagels Collection


Kids' table

Jack's Thanksgiving Dinner
(not exactly turkey and mash potatoes)

Jack enjoying Christmas music on the iPod

Sunday, November 18, 2007

Weekend of Dance

Update: by the time we left Sunday evening, Eric was on maximum dance/music overload (as was I) and he just kept saying "I'm outta here" and at one point he left the Ballroom and said he was going to find the elevator and go back to our room ... and off he went. After a few minutes I went out into the lobby and saw him wandering around trying to find the elevators. I'm not sure what he thought he was going to do once he got to our room since he didn't have a room key to get in. The event ran over and we made it home by 4am ... got a few hours of sleep and I was out the door for work. I let Mary and Eric stay home from school. Oh... to be a kid again!

Mary, Eric and I are in Los Angeles for the "Oireachtas", the regional Irish dance competition that Mary and my niece, Shannon are participating in. Mary finished up yesterday and her Ceile team did well, placing 11th out of 40+ teams. Shannon dances today and we hope to get on the road by 7pm. We should roll into Phoenix around 2am (with the time change) and hopefully, I'll get a few hours of sleep before it's time to get up and start another busy week! Jack, Hilary and Mark are enjoying the peace and quiet of not having Eric buzzing around all weekend. Eric is doing great considering he's been stuck in a room for two days listening to the same music play over and over again and watching dance after dance after dance.

Here is a video clip of Mary's team dancing (it stops before the dance is finished because my memory card was full).

and a few pictures ..........

Tuesday, November 13, 2007

Radiation Completed

After (1) trying every medication known to help decrease saliva production; (2) ligating (tying off) the lower salivary glands; and (3) completing a year and a half of botox injections with limited results, and almost two years after we first met with a radiation oncologist to discuss radiating Jack's salivary glands ... Jack finally had the radiation treatment today. Radiation is a treatment of last resort other than surgically removing the glands (which is a heck of a lot more painful than radiation). Jack was a trooper through the whole thing. He had to be in the room alone for about a half hour. They had a camera in the room and we could see him on a monitor, but I wasn't comfortable with him being in there by himself and not being able to see his face - so I requested a pulse-ox, which they quickly provided. Being able to see his numbers throughout the treatment made me feel better. Everyone treated Jack well and they even gave me a little gift when we finished (I guess they felt bad for the scheduling snafu a couple weeks ago). We should see maximum results within two weeks. Wish us luck!

Here are some pictures post treatment (after the radiation mask was removed):

Happy to have the mask off!

Tomorrow morning Eric has a well-check with the pediatrician. Eric hasn't had a well check since he was a year old (who's got time for well-checks?) I'm only taking him in because he needs vaccinations for school. There are several vaccines I won't agree to give him -- a couple of the newer ones. However, I'm okay with the ones that have been around since I was a kid. When we explained to Eric what vaccines he needed and why, he - naturally - wanted all the details about the diseases that he could get if he didn't get the vaccine. I suppose he wanted to weigh the pros and cons before he agreed to this! Tomorrow should be interesting .........

Friday, November 09, 2007

Week Over

TGIF ... I'm tired and ready for the weekend.

Jack had his just because appointment with the pulmonologist on Wednesday and that went fine. He wants to see Jack again next June just because. I really do like this pulmonologist. He's the third one we've had since moving home and he is definitely the best in town, especially as far as being responsive to phone calls and seeing Jack when he is sick. The pulmonology group we saw before our current doc would always tell me to take Jack to the ER whenever I'd call to get an appointment when he was sick -- they never even tried to fit him into the schedule. Obviously, they didn't understand that I don't do ERs.

Eric had another rough week at school. His teacher emailed me a very detailed report of Eric's behavior on Monday. To be honest, I don't really need all the details of Eric's bad day. I understand she wants us to be aware of what Eric's issues are, but I really wish she'd just take Eric by the ear and haul him down the Principal's office, if that's what it takes to put some fear in him! Seriously though, I think she needs to be a little tougher on him. Monday night, Mark was talking to Eric about his behavior and after several minutes of responding with "I don't know" to every question Mark asked, Eric apparently had had enough as he looked at Mark and said: "I'm just about ready to call 9-1-1" He definitely has a knack for making you laugh when you really shouldn't (of course, Mark and I only laughed about it out of Eric's sight).

Next week will be a busy one with more dr's appointments, Eric's school play, and we head to Los Angeles on Friday (or Thursday night, not sure yet) for an Irish Dance competition for Mary. I'm just going to hang out this weekend and rest (yeah, right!)

Enjoy your weekend and savor the moments.

Monday, November 05, 2007


For reasons some may understand and most may not ... Jack's birthday is a very difficult day for me. But, I got through it and I think Jack enjoyed his birthday weekend and that's what really matters. We went out to dinner both Saturday and Sunday and he always enjoys getting out of the house. Since I didn't send out my usual birthday email this year, I didn't hear from many of the people who typically send the obligatory response wishing Jack a happy birthday. However, one very special doctor did remember Jack's birthday even without a reminder. Dr. Garcia was a PICU fellow who managed Jack and his vent for the first two years of Jack's life. After finishing his training, Dr. Garcia returned home to Puerto Rico, but has kept in touch with us through the years. We love Dr. Garcia and he gave me a much needed lift in my spirits by remembering Jack's birthday.

Dr. Garcia and Jack:

No less meaningful were the e-cards, the gifts and all your well wishes on Jack's blog. Jack and I are very lucky to have so many people in our lives who care - thank you all!

I rescheduled Jack's radiation appointment for next week. He sees the pulmonologist on Wednesday and I need to somehow fit in a time for the company representatives for another eye-response communication system to come out to the house and try it out on Jack. We aren't sure we want to go with the ERICA system because several of Jack's therapists think this other system might be better for Jack. We've got a busy couple of weeks coming up and before we know it, it will be Thanksgiving. Where did this year go?

I'll close with a picture of Jack enjoying "Happy Birthday" sung by the waiters at the restaurant we went to on Saturday.

Have a great week my friends.

Sunday, November 04, 2007

Happy Birthday Jack

Happy 9th Birthday to my son ...
My inspiration ...
My compass ...
My teacher ...
My sunshine ...
My everything ...

Love you buddy!

Friday, November 02, 2007

Prelude to the Birthday

Jack’s 9th birthday is this weekend. Every year since Jack’s 5th birthday, I’ve sent out a birthday email letter to friends and family sharing my thoughts about Jack, about myself and about this journey we are on. I’ve shared my thoughts through words, through pictures and through videos. The weeks leading up to Jack’s birthdays are always a time of great retrospection, soul searching and emotion and each year’s birthday letter has its own unique tone, largely a reflection of the events of the prior year. So, I share with you my birthday letters of past, as well as my thoughts and reflections as Jack prepares to celebrate his 9th birthday.

Jack's 5th Birthday

Hi Everyone:

I just want to share with you that Jack celebrates his 5th birthday today. If you had told me five years ago that Jack wouldn't walk, talk, eat or breathe on his own at the age of five, I think I would have crawled into the nearest hole and died. In the beginning of this journey, we all had so much hope. I, along with Jack's doctors, nurses and therapists worked so hard to achieve independence for Jack. Independence from the wheelchair, the feeding tube and most of all, independence from that damn ventilator. But, despite all our hard work . . . it's not to be.

Today, I have new hopes for Jack. I hope that every morning when he wakes up and every night before he closes his eyes, he feels safe and knows that he is loved. I hope that his days on this earth are lived without pain. I hope he achieves a way to communicate his feelings and desires to others. I hope he stays healthy. I hope he accomplishes all that he is capable of.

As for me, my idea of happiness has changed considerably. I'm happy to only have to suction Jack 10 times a day, rather than 100. I'm happy if he only pukes once a week, instead of every day. I'm happy when the DME company gets my supply order right the first time. I'm happy to never see the inside of a PICU again. I'm happy to see his contagious, beautiful smile. I'm happy to hear him laugh. I'm happy if he's happy.

It has taken many years, a lot of tears (and an occasional Xanax), but I have finally come to accept that Jack will always be who he is today - wheelchair, feeding tube, vent and all. With this acceptance, comes freedom. Freedom from always pushing him to do what he isn't physically capable of doing (he's so thankful for that). Freedom from always having to be in control (well, most of the time). Freedom from wanting to have an answer to everything and, most importantly, freedom from having to know Why? With freedom, comes peace.

Well, this is getting entirely too profound. On a lighter note, it has been said:

"Life may not be the party we hoped for,
but while we are here we might as well dance"

So, Jack and I are going to dance the day away ~

The last five years have not been easy for sure, yet, I consider myself lucky because I've met so many remarkable people along the way. I feel truly honored to be the mom of such an amazing and inspiring little boy. Thanks to each of you for being part of our journey these last five years.


Jack's 6th Birthday
(after he suffered an anoxic event – see Jack’s Story for details)

Hi Everyone;

Jack celebrates his 6th birthday today. As you may remember, last year on Jack’s birthday I shared with you that I had finally achieved acceptance with regard to Jack’s limitations and challenges. What a difference a year can make. A year ago, Jack was chasing his little brother around the park in his wheelchair. Today, it takes all he can give just to get his hand to the controls of his wheelchair. I am renewed in my struggle to understand and accept why Jack must now work harder to achieve even less than he could accomplish a year ago. Yet, despite his new challenges, Jack still manages to face each day with his trademark smile. I suppose it’s not fair to ask for anything more. I want to thank each of you for helping Jack, and for helping me, get through this most difficult year. Jack and I are forever indebted to you for your continued and unwavering support and encouragement. Together, Jack and I will tackle another year of challenges and, hopefully, manage a few successes along the way. Thank you for allowing me to share with you my little hero’s very special day.


Jack's 7th Birthday

Dear Friends,

Today is Jack’s 7th birthday . . . simply, amazing to me. Jack’s birthday is always a time of reflection for me. I think to myself . . . another year of “THIS” . . . we’ve actually made it through another year. There was a time when I hoped that each passing year meant we were that much closer to the end of “THIS” and we could then get on with living the life we had planned for Jack. Obviously, “THIS” is here to stay and, over the years, I’ve learned to appreciate and enjoy this life with Jack. Jack is such a gift. He defines what is important in life – patience, persistence, contentment, simplicity and unconditional love. He challenges me on so many levels, he keeps me grounded and he gives my life such purpose and direction. A little boy who can speak no words, speaks volumes by the way he lives each day. So, on his special day, I share with you the one thing that defines Jack, the one thing that has remained consistent through all of “THIS” . . . . . . . . “THAT SMILE”!

Jack's 8th Birthday

Dear Friends,

Jack is celebrating his 8th birthday. What a ride this last year has been. It has been a rough year for Jack from a health standpoint – with many respiratory illnesses and a difficult recovery from his spinal fusion surgery. Yet, Jack managed to get through it all with his amazing spirit and incredible resilience. This year on Jack’s birthday, rather than share with you my words, I share the words written by a dear friend regarding her reflections on Jack – as someone from the outside looking in:

Jack's existence has meaning and opportunity for every person who meets him. Jack is no genetic mistake, his life on earth gives multitudes the chance to be awed by their own good fortune, to be humbled by Jack's patience and strength, and the opportunity to really matter, by being there for him and his family.

I thank each one of you for embracing the opportunity to share in Jack’s life and for being there for Jack and his family - you matter more than you’ll ever know.

I also share with you a short video I put together which includes pictures of Jack’s journey over the last 8 years. Click on the link and make sure you have your speakers on. Enjoy the ride . . .

8 years of Jack’s journey


Jack's 9th Birthday

Several weeks ago, I told a friend of mine that this year on Jack’s birthday, I won’t be sending out a birthday letter – there will be no profound words or entertaining video because I’m just not up for it. While it’s true that I haven’t prepared the traditional birthday letter and I won’t be sending out a email on Jack’s birthday . . . you’ve got to know me well enough by now, to know that I couldn’t let Jack’s birthday pass without saying something.

This year, I don’t feel particularly happy or optimistic, nor do I feel sad or disappointed. I do feel like there should be something more in life for Jack – I just don’t know what it is. I don’t know if that something more requires me to take some affirmative action or whether it is as simple as me recognizing and accepting that this is as good as it gets for Jack. This passage I recently came across in my favorite book really hit home with me:

It is true that we must experience some successes if we are going to keep on trying things for our children. Sooner or later we have got to get a hit or, yes, we will quit batting. But we might not get one right away. We might not get one for quite a while. We are going to miss. We are going to strike out. We are going to have slumps, but we will never get a hit if we don’t get up to bat.

The first few years of Jack’s life, I got up each day ready to go to bat. I took a swing at anything and everything I could reach to help Jack achieve success. The problem was that I defined success to mean no vent, no trach, no feeding tube and no wheelchair. I struck out on all accounts. With each passing year, it is exceedingly more difficult to get up to bat because the hits are few and far between. I no longer approach each new year with a set of pre-determined goals to help Jack work towards. I can’t define Jack’s successes in terms of measurable progress because then there would be none. It has come to the point where I have to measure Jack’s success on a very primitive level. Is he happy? Does he feel safe? Loved? Without pain? Yet, isn’t feeling happy, safe, loved and without pain success enough . . . for any of us?

So, as I reflect on this last year, I find successes in Jack’s smile and his laughter, in a year without surgery or pain and a year of good health. I find success in the knowledge that Jack is loved and feels the love of many. Yet, I still wonder … is there more out there? Is there something else I should be going to bat for? Nine years into this journey, I recognize that it’s unlikely I will ever accept that this is as good as it gets for Jack. I suppose it’s my struggle with the reality that is and the reality I want that forces me to step up to the plate and take another swing. I don’t always know what I’m swinging at, but I have to keep on trying.