Sunday, April 29, 2007

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.

Wednesday, April 25, 2007

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.

Sunday, April 22, 2007

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.

Wednesday, April 18, 2007


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.

Sunday, April 15, 2007


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.

Friday, April 13, 2007

Happy Friday


(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 ;-)

Tuesday, April 10, 2007

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!

Sunday, April 08, 2007

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.

Friday, April 06, 2007

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.

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

Wednesday, April 04, 2007

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!


Sunday, April 01, 2007

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.


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.