Eight Years Ago Today

June 8, 1999.

Eight years ago today Jack was discharged from St. Louis Children’s Hospital PICU after a three month stay that began on March 7, 1999. We were about two weeks short of discharge when I was asked who I wanted to manage Jack and his ventilator after we left the PICU. It never even occurred to me that we had to have someone “manage” the vent. I think the term they use is …. denial. I could not wrap my head around the fact that I had to actually walk out of that PICU with this huge monster of a machine (the “portable” ventilator) and that Jack had to actually be attached to it to breathe.

The one thing I did know with certainty was that I’d met every pulmonologist from Children’s during our multiple stays in the PICU and there wasn’t one of them that I wanted to work with. Realizing that I wasn’t going to budge and give them a name, one of the PICU intensivists - Dr. M - came to my rescue and said he would follow Jack if I wanted.  While Dr. M agreed to follow Jack, he assigned the day-to-day task of working with me, Jack and the vent to one of the PICU Fellows -- Dr. Garcia – a very compassionate and a very patient person. It shouldn't come as a surprise that I was not an easy parent to deal with those first few years of Jack’s life. Come to think of it, I’m still not an easy parent to deal with :-) Yet, Dr. Garcia was there with us every step of the way for two years. I had his pager number and email address and he was available and willing to help any time, any day. Upon completing his fellowship, Dr. Garcia returned to Puerto Rico. However, to this day, we still hear from Ricardo on Jack’s birthday, at Christmas and other holidays - he even remembers me on Mother's Day.

Jack and I were fortunate to be in the right place at the right time and were blessed by the willingness of two very special physicians to take on the challenge of Jack (and his mom). They will both forever be a part of our “team”.

Drs. M and Garcia

One of the things I am most proud of is that since his discharge eight years ago – Jack has not been admitted to the hospital for a respiratory illness - ever. That’s quite remarkable for a ventilator dependent kid with a neuromuscular disease. About two weeks after Jack’s discharge, Dr. M told me in an email: “When we send home an infant on a ventilator and he/she is able to stay home for the first few weeks, i.e. they don’t need to be readmitted for some emergency right away, we feel this is a good sign. Yes, a vague sign, but a good sign nonetheless.” Needless to say, it was more than a vague sign – it became our standard – we don’t “do” ERs or hospitals (unless there is surgery involved or we disconnect ourselves from our vent for an extended period of time).

A lot of the credit for keeping Jack out of the hospital goes to Jack’s nurses, for not only providing excellent care, but for also trusting me. There have been many, many times when Jack’s nurses have strongly suggested that we go to the ER when Jack was sick. However, whenever I’d take the position that “we can handle this at home” – which is the position I always take - they have always deferred to my judgment and jumped in to get the job done to keep Jack home. Jack has had an amazing team of physicians and nurses who have kept him healthy and home!

During his extended stay in the PICU, Jack amassed quite a significant fan club among the doctors, nurses and respiratory therapists. As you can imagine – it was those eyes and that smile that drew people to Jack’s bedside. A few days before discharge, I left a book by Jack’s bed for those people who had cared for him to sign. Here are just a few of the comments left in Jack’s book:

Jack, I look forward to coming to work so I can see you. Seeing you always keeps my life in the proper perspective because even after all you have been through . . . you always have that perfect little smile ready to cheer me up! You are just the most wonderful baby boy . . . you are “laid back Jack” and I love you! P.S. I will always hold you dear to my heart! You’re one tough little guy!

Jack, I am so glad to hear that you will be going home soon! Not because I want you to go, but because you deserve to be home with you family and friends who love you. I will always remember coming into work and looking forward to seeing your absolutely adorable smiling face and your big bright eyes. Helping to take care of you has always been a pleasure and a true rewarding joy.

Jack, to one of the most beautiful babies I’ve ever seen. May these last months be the saddest you have, so everything is bright from now on. Stay as you are – beautiful.

Smilin’ Jack – We are so glad that you finally get to go home and be with your family. I know your sisters miss you! I am really going to miss seeing your darling, smiling face!! On bad days, I would come by and play with you for a few minutes and you would totally cheer me up. Take care sweet boy.

Little Jack Schrooten – a great title for a storybook. The little guy with the greatest smile. . . You will be missed, but I am so happy you are going home. I will be looking forward to social visits only in the future.

Jack, over the past 6 months I’ve had a chance to get to know you inside and out – all you have to show for it is a few scars! What I have to show for it is good memories of a handsome little boy with a wonderful family. My biggest wish for you is that you have a long, healthy life filled with love and happiness. Dr. M (Jack’s cardiothoracic surgeon)

Sweet, sweet Jack. This place is going to be a little less bright without your sunshine smile that you were so generous with. It has been a wonderful blessing to have known you and your mama. You are definitely a little angel sent from God to remind us why we do what we do. I guess you’ll have to find some other girls to flirt with. Just remember you can always come and visit – you don’t want us to go into Jack withdrawal, so please keep in touch. Thanks for the memories. May God’s hand always stay upon you.

Dear Jack, I’m so glad you’re finally going home. You were such a special little boy. It really won’t be the same here in the PICU without you here though. I could always count on coming over to your bedside and getting a big ‘ol smile. Even when times were down you brought joy to us.

Jack, what are we going to do without your smiling face? I will miss you terribly. I’m sad for us, but happy for you.

Jack, if you only knew how much joy you’ve brought to all of us here in the PICU . . . bless you and your family. May you find the joy in your life that you bring to those who love you.

Finally, I share with you some pictures from Jack’s discharge day. Eight years ago today ...

The sign on Jack's bed when I arrived in the morning

Jack and the very special Dr. Garcia

Jack wearing the hat Dr. Garcia got him as a going home present

Jack and his primary nurse, Kym - who came in on her day off to say good-bye to Jack
(incidently, Kym cared for Jack again last summer after his spinal fusion surgery)

In the car on the way home

At home, snuggled in bed with all his crap (aka, life support equipment)
(isn't that enough to scare the hell out of any parent?)

Hair Cuts

Jack got a much needed haircut yesterday and, after Eric's last trip to SuperCuts -- Michelle kindly offered to cut Eric's hair too! We are so blessed to have Michelle come to our house to cut Jack's hair. She makes one aspect of Jack's life so much easier. Can you imagine the looks we'd get if I wheeled Jack into SuperCuts for a haircut ...

Van update: Guess what? It was a blown rear tire - but, it was the inner tire tube, so it wasn't visible from the outside. Thankfully, the repair bill was much less than we expected.

Have a great evening or a great day (depending on when you are reading this)

Lazy Days of Summer ...

Today was anything but a "lazy day" of summer. I'll try and give you a relatively short version and hopefully keep your attention!

I decided to sign Eric up for summer camp with our school district because I thought it would be good to get him in a routine before he starts Kindergarten. Camp begins at 7:45am and ends at 11:45am. I had it all figured out, I'd drop Eric off in the morning on the way to work and he would ride the school bus from the school where summer camp is to our home school (which is just around the block from our house) and Mary would meet Eric at the bus and walk home with him. Everything was set up and good to go. Then ... I get a call last week from the freshman girls' basketball coach wanting to know if Mary would be interested in attending their basketball camp. Camp runs from noon to 1:30pm. Sounds like a great way for Mary to make some friends before she starts high school and it can't hurt for her to learn a few basketball skills in the process. Only problem, I just lost the person who was supposed to meet Eric's bus at noon. Okay -- not a problem ... my niece Shannon will do Eric pick-up this week. Everything should run smoothly today.

I was home from work today because Jack had two doctors appointments. Our first appointment was with Jack's neurologist to get the botox injections to his salivary glands. We finished up early and had a few hours before we had to head across town to the pulmonologist's office. We decided to grab a quick lunch at the Mall. As I'm driving from the neurologist's office to the Mall, I notice the back tires of van are making a really loud noise and the van is kind of shaking. We get to the Mall and I completely forget to check the tires to see if they are low or flat. While at the Mall, I get a call from my niece telling me that Eric hasn't been dropped off yet and it's 15 minutes past the time he was supposed to be "delivered". I call Mark -- he leaves work and drives to the school where summer camp was held and they tell him all the kids were put on the bus, but they were running a little late since it was the first day of school. I have no idea where my 5 year old who has never been on a school bus in his life is!! I almost wished the kid had a cell phone so I could call and check on him. Finally, I get a call from Mark that Eric's bus has arrived and he is fine. My niece gets Eric home and Mark goes back to work. We leave the Mall and get on the highway to our next doctor's appointment. Once we are back on the road, the van is sounding even worse, but I keep driving ... because I'll be damned if I'm going to miss the doctor's appointment I took off work to make. Suddenly, we hear a loud clunk ... I pull off the highway, sure that I've got a flat tire. I check all the tires and they seem fine, so ... I get back in the car, turn on my hazard lights and drive down the highway going 45 miles an hour in a 65 mile an hour zone because I WILL NOT miss this doctor's appointment. The van continues to shake terribly and at this point Kristi is on the phone to her husband and he is telling me I need to stop driving. Noooooo, I will not miss this doctor's appointment I took off work to make! I do have the sense to get off the highway and take the side streets and WE MADE IT to the pulmonologist's office. Phew! We spend all of 10 minutes with the pulmonologist because Jack is doing so well and we really have nothing to discuss. By this time, I call Mark and tell him there is something wrong with the van and he needs to call the tow truck and come get us and bring us home.

Mark heads home to get the other car (the one we can hopefully all fit in) and calls the tow truck. Kristi, Jack and I hang out at the pulmonologist office waiting for Mark. Did I tell you today was the hottest day of the year so far ... 108! Mark finally shows up and I decide I need something to drink. The pulmonologist office is adjacent to a hospital, so Kristi, Jack and I walk over to the hospital ... in 108 degree weather ... to get something to drink. We make our way through the maze of the hospital and find the cafeteria. We're standing in line to pay for our soda and we hear the vent alarm ... POWER LOST is flashing. Shi$, the vent battery is going dead. I brought the back-up battery, but it's in the van. So, imagine ... Kristi and I running through the hospital pushing Jack's wheelchair as fast as we can, hoping we can make it to the van before the battery dies. By the way, did I tell you it's 108 friggin degrees outside!

We made it back to the van just as the tow truck driver showed up. We had to put Jack in Eric's carseat and shove the wheelchair in the back of my car. But, we did it! Eric survived his first school bus ride, Mary survived her first day at basketball camp, we made it to both doctors' appointments, Jack made it home in one piece and the van is in the shop. Me .... I need a beer. What a day.

Here is the day in pictures:

Jack after getting his botox injections ... not a happy boy.

At the pulmonologist's office -- much happier!

A little wind blown after running through the hospital with the vent alarming "power lost"

The van

Jack in a "regular" car seat and not really too sure about it.

Another Blogger?

Given the opportunity, I'm sure Jack would be quite the blogger - he definitely has his mother's fondness for the computer. However, don't count him out just yet. I've been in search of a way for Jack to communicate that is not dependent on this physical strength. Right now, Jack's only means for letting us know (in a way that can be documented) what's going on in that head of his is with switches that are mounted on his wheelchair. On a good day, Jack has the strength to tap the correct switch the correct number of times to activate the computer mouse or the pre-programmed response on the switch. I've always felt that Jack's inability to communicate is due to his physical weakness, not his intelligence. I believe this because Jack's communication skills were much greater prior to his anoxic event -- he could sign, he could say a few words and he could accurately move along his communication board and easily activate it. I don't know whether his anoxic event stole some of his intelligence or just his strength. Jack's neurologist won't give me a straight answer when I ask - she takes the position that she can't say whether Jack present condition is due to his event or his disease. I think she is just trying to save us from additional guilt and pain because, regardless of why ... it is what it is.

Anyway, I digress.......

I think I've finally found a device that will give Jack his one shot at letting us know what's in that head of his. It's a computer that is activated by a person's eyes. This is not the same as the computer system where the user has the dot on his forehead -- that doesn't work for Jack because he can't move his head. The reason this other system might work is because it requires that the individual not move his head and only use his eyes. The system is used widely by adults who have ALS and have lost the ability to move a single muscle in their body, but their mind is still intact. I was given the name of a professor at Arizona State University who might be able to help Jack test the system. Interestingly, after I got the contact information for this professor, Jack was assigned a new speech therapist who I found out trained under this person. The new speech therapist has worked with Jack only once, but she agrees the "light is on" and she thinks it would be worth a shot to try it. She is going to contact the ASU professor and see if we can set something up. I'll give you more specifics about how the system works once we know Jack gets to test it.

I may be setting myself up for disappointment, but if I don't give Jack the chance, how will I ever know? I'd rather be wrong than miss the opportunity if in fact Jack has the intelligence to convey his thoughts via words on a computer. I'll keep you posted.

As you can see, I thought it was time for a new look on the blog. Blogger has all these cool customization features now and I'm sure I'll be playing around with the template all weekend. I did make the text bigger because I don't know about the rest of you, but I have a heck of a time reading my posts because the words are so small. I've got to believe there are a few others of you out there who might appreciate the larger text :-)

For those who wanted to see pictures of Mary's "new" room -- it's still a work in progress. We need to do some more painting this weekend and, now that the room is all new colors -- she needs new furniture to go with it (of course!) After it's all finished, I promise to share pictures. Stay tuned.

Have a great weekend.

A Vessel

Like many parents of children with disabilities, the single biggest issue I worry about is Jack's future. What will he be able to do, how will his life be, will he be happy, will he be safe, who will take care of him if I'm gone? What I have come to realize is that I'm making myself sick with worry over Jack because of his obvious issues and needs while at the same time holding the arrogant assumption that I have nothing to worry about when it comes to my other kids, or me or Mark because we are all healthy. Yet, I know of too many instances where the lives of perfectly healthy children and adults are altered in an instant. When I start to get anxious about Jack's future, I try and remind myself to live in the moment because it's the only thing I can be sure of. I'm not suggesting that we shouldn't plan for our kids' future and make every effort to give them the best chance at life. But, I'm learning to accept that I'm giving my children my best, and as long as I do that -- my best is good enough.

In the beginning of this journey, I wanted all the same things for Jack that we all want for our children -- school, sports, friends ... the "normal" life. I was sad because Jack can't play soccer like I envisioned my boys doing before they were born. Even though Eric can play soccer, being a soccer mom isn't all that appealing to me anymore. Because, if I'm really honest with myself, I would never have fit in as a soccer mom even if I didn't have Jack. It's not who I am.

I truly believe that I got Jack because I was supposed to. He was given to me to mold me into the person I am supposed to be. I am not a soccer mom, a PTA mom or a Girl Scout leader - I am the parent of a medically fragile child who was given a mission that I only learned of because of Jack. Before I had Jack, I didn't even know I could write. I was a Biology major in college, I couldn't write a creative thought if my life depended on it. I was not born a leader. I wasn't class president or team captain. I have never liked and still don't like to be in the spotlight. Yet, since Jack was born, I've facilitated two national conferences and started a foundation. I often wonder, who is this person? I am Jack's vessel ... he speaks through me. Our children are our compass and they direct us in what we are supposed to do with our lives -- and theirs.

I believe that each one of us was given our special child for a reason. We just have to open our minds and our hearts and listen to where they tell us to go. We are their vessels ... they were sent to make a difference in this world through us. I don't know all of you well enough to guess at how your children are leading you to make this world a better place. I know of one mom of twin boys with disabilities who is a phenomenal photographer and her view of the world as reflected in her photographs is because of how her beautiful, happy boys have changed her. I believe her photography is her boys' gift to the world. The way I see it, that gift is just as important as those given by children who will become engineers, doctors or teachers.

Each one of us will make a profound difference in this world -- maybe not on a large scale, but we will make this world a better place because of our children. They were given to us for a reason and if we stop and listen with our hearts, they will lead us in the right direction.

A Moving Video

My friend Christina -- I say "friend" even though we have never personally met (although we have talked on the phone) because we are friends of the heart -- is Massimo's (aka "Max's") mom and Christina and I met on the trach website because Max has a trach due to complications from being a preemie. Last March, Max had surgery (called an LTR) to open up his airway in the hopes that he would get his trach out. Unfortunately, after a very long month in the hospital struggling to breathe comfortably, Max needed to be retrached. However, Max's doctor and Christina are optimistic that it is a short-term situation and Max will be trach free again soon. Christina chronicled Max's journey in a video she shared with me and gave me permission to share with you. Although this particular journey was only one month, it represents the lifelong journey we parents of children with special needs travel. There are days of hope, days of despair and then returning again to hope in the new day. I was so moved by the video - you can see so much in Max's beautiful eyes. Thank you Christina for allowing me to share this moving video.

Make an on-line slide show at www.OneTrueMedia.com

The Pain of Painting

Rather than take the opportunity to relax and enjoy this three day weekend, we decided to paint Mary's bedroom instead. What started out as a simple project turned out to be a lot more work than expected. Isn't that always the case? Problem with painting is that I have this trick shoulder that likes to wiggle its way out of socket on occasion. It's from my early years as a softball pitcher. Ten years of swinging your arm around in a circle is bound to stretch out all those strings in your shoulder that are supposed to keep it in it's place. All the pushing of the paint roller up and down the wall must have loosened things up a bit because I went to move my arm in one direction and my shoulder went another. Ugh! Sometimes I can get it back in by myself and sometimes a trip to the ER is required. Fortunately this time, I was able to shimmey it back into socket. I suppose I should see an orthopedic surgeon to have it fixed, but I'm not about to sign up for an elective surgery and intentionally place myself in a hospital environment. I know better!

Poor Jack has been a bit neglected because of the painting project. It's kind of difficult to paint and and give Jack a lot of attention at the same time -- especially when we are on different floors of the house. There's lots of running up and down the stairs. It goes something like this: paint . . . suction . . . paint . . . pour food in g-tube . . . paint . . . change DVD . . . paint . . . suction.

Thinking about my pitching days, I decided to look through my old photos to find one of me in action. Okay, so this is not an action shot, it's a goofy posed shot. I look a bit disgusted with the whole thing, don't I? (I was a very serious kid.) If I had to guess, I'd say I was in 3rd grade in this photo. I'm sure my sisters will get a kick out of this!




Funny side note, when I was looking through my stuff to find the picture, I found a bag with things I brought home from the hospital when Jack first came home after he was born. I found a pulse-ox probe. Apparently, I thought it was going to be a keepsake. Ha,ha - joke's on me!

This Child of Mine

Mary is suffering the consequences of getting very little sleep the last week and she is being quite the little brat right now; Eric is running around the house like a madman spreading toys and chaos in his path; Hilary is pacing (which she does when she gets into her creative, story-writing mode) and then . . . there is Jack. Jack just is. He lies in bed unable to move little more than his fingers, watching with such intensity the microcosm swirling around him and he smiles, he laughs and he is so content just taking it all in. This child of mine is so amazing. Every evening when I walk in the door from work, I go directly to Jack’s room and the warmth I feel when he sees me is tangible. I can’t explain it, but his presence is so powerful. The way he looks at me, it’s almost frightening. It’s as if he sees directly into my heart, my head and my soul. I swear he knows everything about me. And, those eyes … they talk to me. They say “Mom, everything is OK, don’t worry about my g-button, those difficult medical people, insurance and equipment companies, nursing issues or billable hours.” “Mom, don’t sweat the small stuff, and it really is all small stuff.” “All that really matters, Mom, is that you love and you are loved.”

I don’t need to read books; I only need to read my son. If I could get into that head of his - what else would be revealed? This child of mine truly brings me to my knees. He says so much without saying a word. The simple act of holding his hand brings about a sense of peace and compels me to stop and reflect on life during those times when I feel overwhelmed.

I know this all sounds incredibly melodramatic, but tonight has been one of those nights where being in Jack’s presence has moved me. Tonight is one of those times when I felt compelled to stop, reflect and write. This child of mine has taught me so much and, God willing, there is much more he has yet to teach me. I look forward to it.

It’s been over an hour since I started this entry and Eric is now crashed out asleep on the recliner here in Jack’s room; Mary is in her bedroom, hopefully catching up on some much needed sleep; Hilary is upstairs on the computer pounding out the words to her story; and it’s time for me to get this little boy next to me ready for bed. Thank you for taking the time to check in on us and for caring. Some of you I know, many of you I don’t, but all of you are appreciated.

Wherever You Go, There You Are

"WHEREVER YOU GO, THERE YOU ARE"

The significance of this statement is that it can teach you to stop constantly wishing you were somewhere else.

. . .

The truth is, if you have destructive mental habits -- if you get annoyed and bothered easily, if you feel angry and frustrated a great deal of the time, or if you're constantly wishing things were different, these identical tendencies will follow you, wherever you go. And the reverse is also true. If you are a generally happy person who rarely gets annoyed and bothered, then you can move from place to place, from person to person, with very little negative impact.

. . .

Something wonderful begins to happen with the simple realization that life, like an automobile, is driven from the inside out, not the other way around.

Excerpts from Don't Sweat The Small Stuff ...

********************************
Clearly, the author of this book doesn't have to deal with a medically involved child, physicians, nursing agencies, DMEs, insurance companies, or school districts on a regular basis :-) I'm almost finished with the book and my take on it is that the author's approach to dealing with what life throws at you is a bit too simplistic -- at least in my reality. Admittedly, there are a few good ideas and exercises that I can take from the book and realistically apply to daily life. It's a decent read, but I don't think I'd take it as gospel.

Where am I today? I'm in a good place today. I mustered up the energy to call United Healthcare and was fortunate to get a customer service rep who didn't give me any grief, who understood the error and sent the charges back through for reprocessing, and who didn't lecture me on how the system works (pleeeaassee!) Best of all . . . I was off the phone in less than a half hour. Life is good!

I also emailed two of Jack's doctors in St. Louis with questions and I heard back from both of them within hours of hitting the "send" button. I just love our docs in St. Louis (save one) . . . they are accessible, responsive, respectful and compassionate. Too bad they are 1500 miles away.

Where are you today? Hopefully, not wishing you were somewhere else.

Ciao.

Today was one of those days

Today was one of those days that makes you want to go postal.

Last October when Jack had his broviac removed by the surgeon (who didn't even have the decency to numb his skin before he ripped it out), the surgeon's nurse was shocked at the size of Jack's g-button* - she said they put bigger buttons in infants. Why she even felt the need to concern herself with Jack's g-button is beyond me since that is not why we were seeing the surgeon. Notwithstanding the fact that we had NO problems with the current button, I agreed to try a larger size. The operative word is try. We started with a size that was 3 sizes up and it leaked like crazy, so we went down a couple more sizes and, for the last few months Jack has had a size that is bigger than what we started with and which is still leaking. Having had enough of the leaking, I called the surgeon's nurse today and asked her to fax an order to the DME for the size we started out with. She told me she wasn't "comfortable" going any smaller. I explained to her that we never asked for her to change the size, we weren't having any problem before she decided to make a change and that it was completely wrong for her to not let us go back to the size we started with. She refused to fax in an order and told me that I could bring Jack in to have the doctor look at it and see if he would order the smaller size. Why in the hell would I take him in to see the doctor -- why would the doctor know more about what size Mic-Key button Jack needs than I do? THERE WAS NOTHING WRONG with the size we had in before she got the bright idea of trying a bigger size. I told her that it was very, very inappropriate what she was doing and that I would just have my pediatrician fax over a script for the size I want. What a bunch of b.s.

After completing that unpleasant exchange, I called the DME and let them know that they would be getting a script for a new size Mic-Key. I was then informed that I was only entitled to one button every 3-6 months. I asked her who she got that information from, as I've been able to get buttons whenever I needed them over THE LAST 8 YEARS without any problem. She said that's what her boss told her. Needless to say, I wasn't pleasant in my response ... letting her know that until she hears from MY insurance company that they won't pay for a new button, then she had better send me what I order. I also informed her that DME companies are notorious for lying to their customers and telling them that there are limits on supplies when in fact that is not the case at all. I suggested that she believe half of what her company tells her and half of what customers tell her and that somewhere in between lies the truth. Needless to say, I had two new Mic-key buttons delivered by the time I got home from work tonight.

Why is it that the people who are PAID to provide me with services and supplies go out of their way to create hurdles every step of the way? Why is it that the majority of those in the medical arena fail to realize that the patient is the customer?

Is this the small stuff I'm not suppose to sweat over? Is this the kind of stuff I'm just supposed to shrug my shoulders at and say "ok" if that's what they say, so be it? Sure, none of what I dealt with today was a life and death issue. Yet, it is just so infuriating to have to deal with such arrogance and ignorance and argue and fight with people who don't know and don't care just to get what I'm entitled to in the first place.

After those two phone calls, I couldn't force myself to pick up the phone and call United Healthcare to go over the stack of EOBs with incorrectly denied claims. I just wasn't up for dealing with any more arrogance and ignorance. Tomorrow is another day . . .



*g-button = A gastrostomy button is a tube placed in the stomach through which feedings are given. The button is placed through an incision in the stomach and abdominal wall. (for the layman reading this)

Graduation Act II

I'm home after several fun days in NJ/NYC. My only complaint ... it was COLD! Other than that, it was a great time. I only wish my entire family could have been there to enjoy it with me. My sister and I went into New York City on Friday and did a little sightseeing. I also had a nice visit with my friend Carrie, who drove up from South Jersey to see me. Thanks Carrie!

My sister's graduation ceremony was on Saturday. I'm very proud of my sister. She worked very hard to earn her MBA from Columbia University. My sister married young, had kids young and still managed to work her way up the corporate ladder at Amercian Express over the last 17 years. She has done very well and she has accomplished much. Congrats Maureen!

Very happy to be done with school!

We went to St. Patrick's Cathedral in the City and I lit a candle and said a prayer to St. Jude - the Patron Saint for hopeless causes (can't hurt to ask, right?)

Eric had his pre-school graduation on Friday - which, of course, I was unable to attend. Mark and Mary went and enjoyed the little skit put on by the kids. (Before you nominate me for the bad mommy of the year award, I made my plane reservations for New Jersey before I knew he even had a pre-school graduation.) The little boys had to decorate their ties with things that they liked. Any guess as to what Eric decorated his tie with? (those would be bugs!)

Jack is happy to see his mommy.

Thank you all for your nice comments about Mary. She read all the comments and they meant alot to her. She's on a bus heading to Disneyland as I type this. I remember the days of taking the bus to Disneyland with my classmates. Some things never change. She's due back home Tuesday around midnight.

Have a great week everyone.

Graduation

One graduation down, one to go. Here are some pictures from Mary's 8th grade graduation (and a picture at home with Jack before we left for graduation.) Mary is so sad to be leaving her friends. Little does she know that 4 years from now, she'll be sad to leave her high school friends and another 4 years after that ... she'll think the saddest day of her life is having to leave her college friends. I can only hope and pray that graduation sadness is the worst sadness she'll ever have to experience in her life! I'm up and out the door early tomorrow morning to catch my flight to New Jersey for the next graduation.

Jack is much better and back to his baseline. Thank you Jack! It really makes me happy when Jack can get through an illness without having to involve medical professionals (it's that love/hate relationship with doctors that I have.)

Thanks for checking in and I'll see you all back here on Sunday.

And I paid for this?

Mark took Eric to SuperCuts yesterday for a hair cut. Here is what we got for $10:

All you moms out there, tell me ... would you have walked out of there with your kid's hair looking like that? It doesn't take a hair expert to figure out something is not right! I guess you get what you pay for, eh?

I also paid (more than $10) for this:

Mary is so excited about having her braces off that every time I turn around, she is snapping a picture of herself with my phone camera! Clearly, our orthodontist is much better at his trade than the hair "stylist" (and I use that term loosely).

This week is a crazy week. Mary's 8th grade graduation ceremony is Wednesday and I leave at 8am Thursday morning for New Jersey to attend my sister's graduation from Columbia. Mary leaves this weekend for her 8th grade trip to Disneyland and I have to get her ready before I leave. Too much to do and no time to do it.

Jack is battling something - he has a higher than normal heart rate and bloody secretions. His sats are fine, so I'm not too worried, except for the fact that I'll be gone for four days and Mark will have to try and figure things out in my absence. He's a great dad, but not so great at troubleshooting Jack. I just hope Jack starts to improve before I leave, or it will be a very stressful four days for all involved.

Ciao.

Happy Mother's Day

Thoughts of a Mom

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.

You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

***********************************

Happy Mother's Day to ALL mothers. To my fellow sorority sisters - you are all amazing women and amazing moms - you truly are the elite. If I must be part of this sorority, I can't think of a better group of women to hang out with. Have a great weekend my friends.

Smile

Smile and the world will smile with you!

Moments of Perfection

For my birthday, Kristi got me the book "Don't Sweat the Small Stuff ... and it's all small stuff". You think she is trying to tell me something?! Nine pages into the book and bingo: "Make Peace with Imperfection". How appropriate. And I quote:

I've yet to meet an absolute perfectionist whose life was filled with inner peace. The need for perfection and the desire for inner tranquility conflict with each other. Whenever we are attached to having something a certain way, better than it already is, we are, almost by definition, engaged in a losing battle. Rather than be content and grateful for what we have, we are focused on what's wrong with something and our need to fix it.

The proposed solution:

. . . catch yourself when you fall into your habit of insisting that things should be other than they are. Gently remind yourself that life is okay the way it is, right now. In the absence of your judgment, everything would be fine. As you begin to eliminate your need for perfection in all areas of your life, you'll begin to discover the perfection in life itself.

I'm not sure things shouldn't be other than they are right now, after all . . . Jack should be playing and running around, not confined to a wheelchair and hooked to a machine 24/7. Nor am I sure that in the absence of my judgment everything would be "fine".

However, knowing that things will never be my way (the "perfect" way), I recognize the importance of savoring each moment of joy, each moment when things do go according to plans, and the moments when life is calm and uneventful. It is important at those times to recognize that "life is okay the way it is right now, at this MOMENT". By enjoying the moment ... it IS possible to discover perfection in the moment itself. We don't need (or get) a lifetime of "okay; however, the moments of "okay" are enough to sustain us and fill us with inner peace .......... if only for the moment.

Golf Anyone?

Today was a gorgeous day -- unusually cool for May in Phoenix. We walked to the park for a little golf with the boys. Eric has a pretty good swing, we might have to capitalize on that in the future! Eric hit and chased the ball around the park for over an hour. I got a short video clip - it's not great, but you get the idea. Have a great rest of the weekend!

Jack the caddy.

Make video montages at www.OneTrueMedia.com

Too much golfing tires a kid out!

Mom's Birthday

Okay, so I turned 30 today (for the 16th time!!) What a fun day today was. I spent the majority of the day on the phone talking with family and friends. Who cares that I didn't bill but an hour or two at work ... I am blessed to be surrounded by so many people who care. Thank you all for thinking of me today. We topped off the day with dinner at the Cheesecake Factory. Hilary had to work, so she didn't go (but, she doesn't yet know that she missed out because she is still at work ;-)

Definitely, enjoying the moment!

Alert status downgraded

The nursing alert status has been downgraded to blue (guarded). I had a long and productive conversation today with both the nursing supervisor and the nurse manager. Kristina, you'll appreciate this -- they called Kristi before they called me to ask her if I left the agency, would she go with me (OF COURSE she would - she loves Jack). Kristi and I talked about finding a new agency, but the fact is, the staffing problem is universal and switching agencies wouldn't guarantee nursing. I do feel much better because they told me that I am a priority client because (1) I am in this for the long haul, and (2) Mark and I both work outside the home. They assured me that Kristi will be here every day until they find someone we are comfortable with. They suggested getting someone else in two days a week to give the person an opportunity to bond with Jack. I think that is a good idea for a lot of reasons. Everyone acknowledged that Kristi is so attached to Jack that she is the one having the most difficult time letting someone else care for him. I am so incredibly lucky to have a nurse who is so protective of Jack, but I think in the long run, it will be better if we can get someone else in who we can trust with Jack -- knowing that this person will never take Kristi's place. The nursing supervisor told me that she recognizes that she needs to find someone who not only I approve of, but who Kristi approves of too.

As of now, Kristi is on the schedule full time until they find someone who is a good match. Of course, me being the person who takes everything to the worst case scenario - in my mind, I already had the "for sale" sign in the yard and was searching for an apartment to move into since I was surely going to have to quit my job and stay home with Jack. I guess I can relax for the time being, eh?

Onward we march ..........

Nursing Issues

So much for not having anything to worry about. Nursing issues have risen to an orange (high) alert status. I'll try to give you the short version. We've been with the same agency since we moved home -- almost 5 years and Kristi has been with us the entire time. Kristi has always worked 4 days a week and we always had a different nurse 1 day a week. Our 1 day a week nurse has been a revolving door. The nurse has either moved or we weren't comfortable with the care provided. We were without our "1 day a week" nurse before we left for Jack's surgery in St. Louis and we decided after we got home that we only wanted someone who knew Jack and who we trusted 100% (aka Kristi) taking care of Jack during his recovery period. Kristi has been our only nurse since August until we got the last nurse who was way too reckless with Jack and we asked him off the case. Kristi is exhausted and really wants one day off a week, but also doesn't want to leave us without nursing one day a week because ... HELLO .... Mark and I both work full time! The agency called Kristi today and asked her when she wants to start working only 4 days a week. She told them when they get someone else in here who can work 1 day a week. The agency told her that "no" - if she wanted one day off, she would be required to take it off even if they couldn't staff the day. They told Kristi that families have to do without nursing and that is the way it is. I'm getting all of this from Kristi, the agency doesn't even have the decency to call me. Needless to say, I left a very forceful message with the nursing director and told her I expected a phone call tomorrow. I am so pissed right now, I can't see straight. We are approved for 71 hours of nursing a week and we are getting less than 50 staffed most weeks and, now, they think they are going to cut out another day. Life is stressful enough dealing with Jack's health issues, but adding the stress of getting enough nursing coverage so you can go to work, earn a living and support your family can push you over the edge. Mark and I already eat up so much of our vacation and sick time because of lack of nursing, we are not in a position to be without nursing one day a week on a regular basis. Anyway, this is just a total vent post because I’m so mad right now, I just have to get it out!

Ahhhhh … just another day in the life.

NOT ENJOYING THE MOMENT!

It's Tuesday morning ...

and there is absolutely nothing new to report. Kristi can't work until noon today, so I'm at home with Jack and attempting to get some work done (yeah, right!) It is nice to have the house all to myself, with Jack of course ... but, he is certainly not demanding and he's a complete joy to just hang with. Here are some pictures from this morning - sorry, it's all I've got for today.

Jack and mom checking out mom's favorite websites

(I set the timer on my camera for the picture of me and Jack and quickly jumped in bed to get the "live" shot)

I was sitting in Eric's room this morning waiting to get him ready for school and just had to snap this picture. Classic picture of sibs sharing a bathroom in the morning. You have to look real closely to see Eric!

ENJOYING THE MOMENT ...

Home from Vegas

I made it home from Vegas with a few dollars left in my pocket. I only gambled (and lost) $5, but as anyone who has been to Vegas knows - it ain't cheap. We saw a show, ate a lot, drank a lot and spent a lot of time sitting in traffic on Las Vegas Boulevard! I was amazed at the number of people in Vegas. Definitely, "Disneyland" for adults. I had a lot of fun . . . so much fun I didn't have time to document it in pictures. So sorry! It was a great time spent with some great friends. I wouldn't say it was a restful time (except for Friday morning when they called and asked where I was ... it was 9:30am and I wasn't up yet ... whoops!!) But, it was nice to be away from the stresses of home and work for a few days.

My kids were happy to see me, or should I say - they were happy to see the gifts I brought home. The first words out of Eric's mouth were "What did you bring me?" Of course, Jack was just happy to see his mommy.

The nursing saga continues. The new nurse who was supposed to start this coming week decided she didn't want to work our case because she wasn't comfortable working with Jack (at least that is what they are telling me). We are now back to square one with Kristi being our only nurse. May is going to be an extremely busy month with Mary's graduation from 8th grade and all the events that go along with that and with me leaving for New Jersey in a few weeks for my sister's graduation. I REALLY need more than one nurse! This whole nursing thing is so frustrating at times.

That's my lame update. I've got loads of laundry and tons of housecleaning to get done before the start of another week. Hope you all have a good one and thanks for checking in and thanks for your Vegas well wishes.

Heading to Vegas

I'm flying to Las Vegas tomorrow for a girlfriends' rendezvous. Believe it or not, I've never been to Las Vegas! I'm not much of a gambler, but I am looking forward to spending time with my friends, eating, drinking, shopping and, most importantly .... sleeping two full nights without having to listen to a ventilator. Yippee! Jack is fantastically healthy and Kristi will be working the majority of the time I'm away - so, I'm very comfortable leaving for a few days. As painful as it will be, I'm not taking my computer with me. I am taking my camera and will share pictures and all the details when I return (well, maybe not ALL the details :-)

Until then ... ENJOY THE MOMENT.

Don't ever forget . . .

Comments to the Comments

I have received so many responses to my "Perfection" post, both in the comments posted and in emails. I am amazed and truly humbled that I "speak" for so many of you. I was actually hesitant to post the entry because I thought some people might see me as this horrible mother who doesn't love or appreciate her children. But, as most of you have hopefully figured out, the issues I've had to work through reside with me, not my kids. Thank you to those of you who shared with me that you too have the same struggles.

To my friend Kerry . . . filet mignon, eh? Funny thing is, I can't stand red meat! (but, I do appreciate the analogy.) As for not being "happy enough" -- that's a tough one. There are those who will tell you that happiness is a choice, that all you have to do is choose to be happy and voila -- Happiness! However, I know better. It's exceptionally difficult to be happy when you are living with chronic exhaustion, worry and stress. For myself, I'll settle for contentment. Contentment is good . . . albeit transient. As simplistic as it sounds, it really is about trying to live one day at a time and enjoying one moment at a time. Anything beyond that is just too overwhelming. It's the moments of contentment that sustain you. If it's any comfort Kerry -- most of my days are sloppy joe days too :-)

To Jen - who left a comment asking if I've ever written about my journey with Hilary. In so many ways, my journey with Hilary ended when Jack was born. 100% of my time and attention turned to Jack and, for the most part, remains with Jack because his very life depends on my time and attention. Ironically, the year Jack was born was the year Hilary started talking. Up until that year, she hadn't made much progress and it was suggested that Hilary might not make any further progress and she might be better off in a total communication environment. However, the year I was completely out of the picture (literally) was the year Hilary "took off" with her speech. Okay, what does that tell you? Without question, Hilary's early years were a journey worth writing about. We experienced all of the same challenges and dilemmas that parents of newly diagnosed deaf children encounter -- total communication or oral? Mainstream or school for the deaf? Hearing aids or cochlear implant? Interestingly, we've tried every one of the above .... so, I guess, we do have a lot of experiences to share. The biggest and best decisions we ever made were to give Hilary the cochlear implant and to move to St. Louis. Today, Hilary is 16 years old, she is completely "oral" - she communicates by talking (although she is difficult for many people to understand) and she relies on her implant and lip reading to understand her speaker. Hilary is a sophomore in high school, she is fully mainstreamed without any support services and she just started her first job. Yes, Hilary is doing okay! Hilary's success is due in large part to the incredible teachers, speech therapists and audiologists at the Moog Center for Deaf Education* in St. Louis, which Hilary attended for five years. It is a remarkable school that achieves remarkable results with deaf children. As we sit here today, I'm not sure there is much about Hilary I could journal on. However, I am always willing to share our experiences with other parents of deaf children whenever asked.

(*long story short - we moved to St. Louis to attend the Central Institute for the Deaf (CID). Two months after Hilary started attending school there, CID fired the Director of Deaf Education (Jean Moog). It was a huge fiasco and the bottom line is that Jean started her own school and took with her the majority of the teachers and therapists from CID. We made the decision to leave CID and follow Jean Moog.)

Okay, I've rambled on long enough. Until next time . . . ENJOY THE MOMENT.

Update?

I feel like I should post something new and bump my latest "confession" down a notch. I have to share with you that it took many, many hours and a few glasses of wine to draft the last post. If I was ever to write a book, I'd have to take a sabbatical to get it done (which doesn't sound like a half bad idea right about now!) Thanks for all your comments ... they are much appreciated.

Anyway, not much going on. All is quiet, all is well. We have Kristi all this week which makes life so much less stressful. We have a new nurse who oriented last week and will orient again on Friday and then work one day a week starting next week. She doesn't have any vent experience, but ... not to worry. As long as she knows how to keep the trach clear of secretions and use an ambu-bag - we'll be fine. It's been my experience that the nurses who come in "fresh" actually end up working out better because they don't have preconceived ideas of how things should be done. They get to learn how to do things "Jack's way". Fortunately, Jack is healthy and doing well, so it's a good time to find another nurse to bring on board. We wish Kristi would just move in with us, but she does have a family of her own (darnit!)

I'll try and update with something of substance - but not too "deep", soon.

*In case anyone is worried ... I should add that the new nurse will be trained on the vent and I'm sure she'll pick it up quickly -- it's not rocket science.

Perfection

No child is perfectly whole in mind, body, spirit, ability ... nor can any child meet all of a parent's expectations. Yet, there is a wholeness of each and every child that is unique and brings with it a unique set of possibilities and limitations, a unique set of opportunities for fulfillment.

Fred Rogers, Mister Rogers' Neighborhood

************************************

“Must be nice to be perfect."  If I heard this once, I heard it a hundred times growing up. Apparently, I thought highly of myself and I didn’t hesitate to profess to the rest of my family that my way was the right way ... the only way ... the perfect way! I am told that as early as first grade I was re-doing my class work because it had to be perfect. A speck of crayon outside the lines was simply not acceptable. While I don’t claim to be perfect, I do confess that I am a perfectionist.

A friend of mine tells me that nothing in life happens by chance; that each of our lives is a carefully orchestrated series of events designed to teach us specific lessons catered to our individual weaknesses and flaws. Any guess as to which flaw of mine precipitated the events of my life?

Sixteen and a half years ago, I anxiously awaited the birth of my first child, anticipating nothing less than a healthy and perfect little girl. Hilary was born without complication and our first year was uneventful. Hilary was an easy baby – almost too easy. At thirteen months of age, Hilary was diagnosed with a profound hearing loss – Hilary is deaf. I was devastated, but took some comfort in the fact that she was a beautiful and bright child and, at least to the rest of the world, she looked perfect. We learned sign language and Hilary picked it up quickly. Yet, it wasn’t good enough for me. I wanted her to talk. I wanted her to be like everyone else. I wanted her to be perfect. Because Hilary received no benefit from hearing aids, the decision was made to give Hilary a cochlear implant when she was four and a half years old. After being implanted, it became clear that the services Hilary needed to maximize the benefit of the implant were not in Arizona. I did my research, talked to several other parents of children who had cochlear implants and decided that if Hilary was to ever learn to talk, she needed to attend one of the best oral schools for the deaf in the country – the Central Institute for the Deaf located in St. Louis, Missouri. Without hesitation, we put our house on the market, left our family, friends and jobs behind and moved to St. Louis. For the next three years, I was consumed with Hilary learning to hear with her implant and speak with her voice. I was the parent of a deaf child who attended an elite school for the deaf. I was surrounded by other parents who had also relocated from all over the country and who shared my same concerns, worries and passion to have their child talk one day. None of us could imagine a worse fate in life than having a deaf child.

Apparently, there was more I needed to learn.

My world and my focus came to an abrupt halt on November 4, 1998, when John Michael (“Jack”) came storming into this world seven weeks ahead of schedule. Jack had a bumpy start, but came home after six weeks on oxygen only. I breathed a huge sigh of relief, thinking we had dodged any major complications from his premature birth. Jack’s stay at home was short-lived. He bounced between the hospital and home for two months before his final stay that lasted three months. I distinctly remember during Jack’s first PICU stay, standing in the hallway looking at a bulletin board with pictures of PICU graduates and the one thing that caught my attention was that there was a lot of kids on that board with trachs. One day, Jack’s cardiothoracic surgeon came walking by and I made the comment to him that seeing all the kids with trachs on their bulletin board didn’t give me a warm fuzzy feeling. He told me he didn’t think I had anything to worry about. (Ha!) During those many months Jack was in the PICU, I prayed like I have never prayed before and my only request was … please, no trach. I didn’t have any experience with trachs, but I knew enough to know that my definition of perfect did not include a child with a hole in his neck. Not only did Jack come home with a hole in his neck, he came home with a hole in his stomach and a whole lot of equipment that I wanted nothing to do with. My mission from the minute Jack came home was to get rid of it all – post haste. I was relentless. I had Jack off that vent 8 or more hours a day, I gave him food by mouth and I had him in his stander several hours a day. I was bound and determined that this was all temporary and that someday Jack would be a typical little boy running around the soccer field. He would be my perfect son, he just needed time.

Jack’s first year quickly faded into his second year and his second year into this third and, despite the fact that he had made little progress during this time, I refused to give up. I continued to push Jack and I continued to be disappointed. After several years, one of Jack’s doctors gently suggested that maybe it was time I made peace with the ventilator. How could I admit to him that the issue wasn’t a matter of accepting a machine, it went much deeper than that – it was facing and accepting the reality that Jack would never be the perfect little boy I dreamed he would be . . . the little boy I needed him to be.

I am a perfectionist and I am the parent of two children with disabilities – a tough combination to reconcile. Without reservation, I love my children with all my heart -profoundly and unconditionally. My greatest challenge, however, has been to reconcile my mind with my heart. My mind is always in overdrive, it relentlessly confronts me with the decisions I have made and with visions of what could have been, what is, and what will be. I am not only a perfectionist, I am a thinker of the first order. It is a constant struggle for me to turn off my thoughts and simply allow my heart to rule.

Author, Anna Quindlen made the following observation: “The thing that is really hard, and really amazing, is giving up on being perfect and beginning the work of becoming yourself.” Indeed. I am learning to measure perfection in relation to my child’s capabilities rather than by my standards. I am learning to allow my children to be who they are, not who I would have them be. I am learning that happiness is not achieved through perfection but through acceptance. With a bit more difficulty, I am learning that to give up my demand for perfection does not mean that I have failed. Yes, I am learning to accept things as they are, rather than as I want them to be. However, there are still those days I wish I was spending my Saturday mornings on the sidelines watching Jack kick a soccer ball around the field instead of spending it suctioning his airway and giving him tube feedings; and those days I wish my vacation time was spent on the beach with my family instead of in a Children’s Hospital. There are still those days I feel completely cheated. Some may think that because I have other children who can do the things that Jack cannot, that somehow this should lessen the pain and loss I feel. It does not. I’ve also been reminded on occasion that “it could be worse.” For the record, I’m acutely aware that it could be worse. On the other hand, my response to that comment is “it could be better.”

I would agree that nothing in life happens by chance. I have been blessed with four incredibly unique children each of whom came into my life in a “perfectly” orchestrated sequence. Hilary is my ice breaker; she opened me up to change and she prepared me for what was coming. Mary is my respite; she was the calm before the storm and she continues to be a calming force in my life. Jack is my storm; he is the storm from which has sprung a rainbow of life’s lessons - lessons of courage, hope, strength, patience, perseverance, acceptance and a love deeper than I ever thought possible. Eric is my bonus; he is everything I dreamed of, but never expected to get.

While I may not have the “perfect” children I once dreamed of, I have four beautiful children who are perfectly happy being who they are. I can’t ask for anything more than that. I have learned.

My children - each at one year of age.

Happy Friday

Cheers!

(I promise my blog thought I've been promising for two weeks by the end of the weekend. It's turning into a thesis! Don't get your hopes up too high though, I'd hate to disappoint)

**Carrie, the Blue Moon is for you ;-)

On a positive note

While I recognize that it's okay to share all my feelings, I prefer to move past the negative as quickly as possible. Negativity is toxic. I try to avoid toxic people and the last thing I want is to become one of those people I'd want to avoid!

So, on a positive note, I thought I'd share some of the good things in life right now:

~Mary is on Spring Break this week which means one less hour of driving in the morning (yippee!)

~ We've made it all the way to April and Jack has not had one single respiratory illness the entire winter.

~ Jack hasn't had to see his pulmonologist since last June or his pediatrician since last May (remarkable!)

~ Everyone who has seen Jack lately raves about how GOOD he looks!

~ In a few weeks I will be enjoying a couple of days in Las Vegas with some of my real cyber-friends.

~ In a month I will be going to New York for my sister's graduation from Columbia (all by myself).

~ It's no longer dark when I leave the office in the evening so I've been able to enjoy beautiful sunsets on my drive home.

I'm sure there is much more I can add to this list, but I need to get to work ;-)

Have a wonderful day my friends!

An Illusion?

I went to Easter Sunday mass this morning with my kids (sans Jack, of course). This last year, it's become more and more difficult for me to attend mass at our church for a multitude of reasons. Today's sermon pretty much sealed the deal for me. For reasons I cannot understand, the priest used his platform to discuss the "evilness" of the internet - an appropriate topic for Easter Sunday, don't you think? He stated more than once (because this guy really likes to repeat himself) that the internet is just an "illusion". An illusion is defined as: "something that deceives by producing a false or misleading impression of reality."

If you were to believe him, then the last 8 months of Jack's life that I've chronicled on this website is false, misleading and deceptive. Perhaps I should forward him the link and then invite him over for dinner and then ask him if everything he read is an illusion. No, this life you are reading about is all too REAL! All the incredible love and support I receive from my internet friends is REAL. There is a website for a little girl named Annie who is fighting for her life right now in the PICU at St. Louis Children's Hospital as she awaits a second lung transplant. I check Annie's website several times a day for updates on her condition. I know Annie and I know Annie's mom ... Annie is REAL. I also check in several times a day with my internet support group - other parents of children with trachs who are some of the most supportive, informative and compassionate moms I have ever met. These people are REAL, their children are REAL and the struggles and joys they share as parents of medically fragile children are REAL.

Yes, bad things can happen because of the internet and, yes, there are many occasions where people pretend to be someone other than who they really are. However, there are also many good things that come from the internet and many more occasions where the people really are who they say they are. To make the blanket statement that the internet is evil and an illusion is irresponsible and total b.s.

Sorry this is such a pisser of a post, but this guy really made me angry and there was no reason to even "go there" in what should have been a sermon focused on celebration and positive things.

So, to all my "illusory" internet friends ... I hope you all have a REALly wonderful week.

Love ya!

***********
Just to clarify - I haven't given up on my faith, just this particular church.

Gone Shopping

Jack took a trip to one of his favorite places this evening ... the mall! We picked up his new glasses and did a little shopping. I'm looking forward to a quiet weekend - our only plans are Easter dinner at my sister's house.

Have a great weekend and a joyous Easter.

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Kari -- oh, the pressure!! Hopefully soon .... lately, I've been choosing sleep over writing. I hope to catch up on both this weekend.

Thank you

Thank you all for your kind and supportive words and for giving me permission to tell it like it is. As Kari correctly noted, it's emotionally draining to confess (and write) the truth. It's much easier to pretend "it's all right as rain" (I really like that expression!) Many of my posts, except for those that are simply recaps of our day, require much introspection and take some time to write. I don't just sit down at the computer and pound out a post in a matter of minutes. I do a lot of thinking, writing, re-thinking and re-writing. I respect the fact that so many of you can relate to my feelings and I am humbled by your comments. Just know that you all are as much my inspiration as I am yours. I'm no more "super" than the rest of you.

I've been working on a "blog thought" for several weeks now but I'm having a heck of a time translating my thoughts into words. It's a tough subject for me, which is no doubt why I'm struggling with it. I hope to finish it soon ... not that you are all waiting with bated breath for my next "confession".

Have a great rest of the week!

Ciao.

My Mantra

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

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I carry these words in my wallet, in my Daytimer and even taped to my computer to remind myself that I have very little control over things in my life and that sometimes I just have to let it be. It's so much easier to say these words than to live them.

I feel uncomfortable and somewhat guilty when I draft posts that are downers - it goes against the persona people have of me, or perhaps the persona I want to believe people have of me. I really dislike it when I allow myself to be overcome with negativity and I dislike it even more after I've let the world in on my negativity. Part of me is not sure this blogging is a good thing as it allows people see a side of me they wouldn't likely see if they only knew me in person (thankfully, the majority of the people I see on a daily basis are unaware of this site.) It's not to say that I'm always happy and chipper in person, but I'm fairly good at pretending things are "just dandy" for the most part.

I just have to remember that this journey Jack and I are on is long and arduous and it must be enjoyed or endured -- as the case may be -- one day at a time. Some days are better than others, but at the end of the day, all I have to do is look into those incredible eyes and I know that if he can keep on going, so must I.