Thursday, May 31, 2007

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, giggly 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.

Monday, May 28, 2007

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.

Sunday, May 27, 2007

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!

Wednesday, May 23, 2007

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.

Tuesday, May 22, 2007

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.

Monday, May 21, 2007

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)

Sunday, May 20, 2007

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.

Wednesday, May 16, 2007

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.



Monday, May 14, 2007

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.

Saturday, May 12, 2007

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.

Thursday, May 10, 2007

Smile

Smile and the world will smile with you!

Tuesday, May 08, 2007

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.

Saturday, May 05, 2007

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.




Too much golfing tires a kid out!

Thursday, May 03, 2007

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!

Wednesday, May 02, 2007

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 ..........

Tuesday, May 01, 2007

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 ...