Hope is the thing that is willing to take a chance on the future. Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job. There is a worse thing than false hope. It is no hope.
What do you do when the sun goes down?
Jack hasn't had his hair cut since March. His personal hairstylist moved to Maryland and we haven't found a replacement yet. It looks like we are going to have to break down and take him into a salon. There is a new Barbershop by our house - I think it's time to venture out.Change is in the air at our house. Last week, Mark started a new job. Mark has had so many jobs over the years as a result of the moves we've made, downsizing and acquisitions. When Mark got on with Edward Jones (8 years ago), we really felt - and hoped - that he would finish out his career there. EJ is a great company with great benefits. Unfortunately, for reasons we will never understand, the person who was Mark's peer (and purported "friend") who then became his boss less than a year ago, made it her mission to destroy Mark's career at EJ. As much as we didn't want to leave the great benefits that EJ has, Mark had no choice but to leave the company. He is back working for American Express, the company he worked for before we moved to St. Louis in 1996. Amex is another great company and while change is always difficult, we feel like it is a good move. It does create more stress for me because of his hours, but I'm trying to just take things one day at a time. I'm also hoping to get some more nursing hours lined up. As for Mark's former boss, I take some comfort in knowing that "what goes around, comes around."
For us, a change in jobs is more than just a change in who is writing the paycheck. The most important thing to consider when making a job change is, not surprisingly, the medical benefits. Before Mark accepted the job with Amex, I spent over an hour and a half on the phone with their benefits person (including a conference call with the representative from Aetna) asking questions and posing every conceivably scenario until I was satisfied that we could make the job change. Most importantly, I had to make sure we could still take Jack to St. Louis for his care (I'm told we can). The last time I dealt with Aetna was when Hilary got her cochlear implant (in 1995) - which they initially denied, but approved on appeal. I just hope that the transition to the new insurance company will go smoothly (ya think?) At least we got United Healthcare to pay for Jack's eye gaze system before Mark left EJ.
Not much else going on here. It's hotter than hell (literally) - 113 degrees today. But, it's a dry heat :-) I'm usually not outside during the day, so I don't really notice the extreme heat (except in my monthly utility bill) - but this weekend I was out and about more than usual and it really is HOT out there!
Mary is home from New Jersey (she's tired and crabby); Eric is bored (according to him, he never gets to do anything); Hilary is a hermit and Jack is doing great!
That's the update from here my friends.
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Since none of us will let Eric watch Sponge Bob for the 1000th time on the big TVs, he's resorted to the portable DVD player. He's quite the Sponge Bob addict ... I hope this is just a phase!
Last night I fell asleep while laying next to Jack in his bed. We were listening to Jack's iPod - which had classical music loaded on it. I was awakened from my sleep by the sounds of Jack crying. I looked over to Jack and he was literally sobbing and had tears running down his cheeks. It wasn't an "I'm hurt" kind of crying, it was an emotional crying. As I looked at Jack and listened to the music (I can't tell you what song was playing), I remembered another time when Jack was moved to tears by the music. When I asked Jack if he wanted me to turn off the music, he stopped crying and smiled. To be perfectly honest, it's really scary how "deep" this kid is.
The other time Jack cried over a song it was the Carpenters' song Solitaire - which is a really sad song, but I would never have thought Jack was paying that much attention to the words or could even understand the words. I have no idea what moved Jack to tears with the song that was playing last night since it was an instrumental and had no words.
I've said before that Jack is wise beyond his years. How many 9 year olds do you know who are moved to tears by music? Whenever I question how much Jack really understands, I am reassured that he understands a whole lot more than I do after events like last night. Sometimes I wonder if Jack truly is an angel on earth sent to be my teacher. Or perhaps that's just wishful thinking on my part to help make some sense out of the life that has been bestowed on Jack ... or perhaps I've just lost my marbles after too many years of sleep deprivation.
Regardless, Jack is not only a wise soul, he is a sensitive soul too.
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Here is the video I put together for the Trach Conference:
We made it to Cincinnati safe and sound. Yesterday we drove down from Columbus and then spent some time down at the riverfront. Eric is having a great time, but man . . . can that kid talk (nonstop!) The Conference officially starts this evening - so, everyone will start arriving today. It should be fun. I'll try and update through the weekend.
I got my new project out the door today, so I finally have some time to share the details. As many of you may remember, several months ago I participated in a "Dear Future Physician" letter writing campaign initiated by a first year medical student as part of her "Reflections in Doctoring" course. The primary message I tried to convey to our future physicians is to "allow kindness and compassion to guide you and, above all else, be a physician who cares".
After writing the letter, I felt compelled to find a way to extend the message in my letter so that it would reach and impact as many young physicians as possible. I came up with the idea of having pocket stones engraved with the words Kindness, Compassion and Care, and providing young physicians with one of these stones to carry in the pocket of their white jacket as a tangible symbol and reminder to always strive to provide compassionate care to their patients and their patients' families.
I ran the idea by several physicians and one of the PICU intensivists who took care of Jack when he was a baby has agreed to be one of the first to try the program. She is now the Director of Critical Care Medicine at Johns Hopkins. If the program proves to be successful (ie: it has a measurable impact in serving as a reminder to physicians to practice compassionate care), then the plan is to reach out to medical schools and hospitals across the country.
It was suggested that it would be powerful for young physicians to see pictures of Jack through the years while listening to the words of my letter. So, I put together a DVD of me reading the letter with a montage of Jack and I included the DVD with the pocket stones I sent out. Here is what I put together:
I received a letter in the mail yesterday that provides, in part:
Based on the information reviewed, we are pleased to inform you that the Speech Generating Device and accessories that John Schrooten will receive from Eyetech, is approved for coverage.
Score one for the little guy! I knew it would be approved on appeal because United Healthcare-less denied the device on a completely bogus basis. UHC cited an exclusion that didn't even exist in the policy. Imagine if we didn't have DDD (Medicaid) as back-up insurance. UHC's b.s. denial would have cost Jack a six month delay in getting the device. It's just so wrong and, unfortunately, the norm for how insurance companies operate.
Onward ...........
Yes ... I'm here! Sorry for the lack of updates. I've got two significant projects I'm working on right now (the Trach Conference and my "Dear Future Physician" project) and work continues to be out of control busy. I seriously have no time to sit, think and write. The Conference is next week and I have to get the other project out the door before I leave for Cincinnati. I will share the details of my "Future Physician" project with you soon - I'm really excited about it. If I can just get through the next two weeks, life should calm down after that (at least in theory).
Eric is so happy to be out of school for a couple of months. The girls are enjoying sleeping in until noon and Jack likes having a house full of people during the day. Life - on the home front - is quiet, uneventful and good.
Here are Eric graduation pictures as promised:
Just some pics from the last week
Has having two children with special needs changed your political and/or religious views? If so, how have they changed?
All is well. Work has been insanely busy and by the time I get home, I'm exhausted and don't feel very inspired to write. I'm also in the final weeks of preparation for a Conference that I am the coordinator for and things are a bit crazy on that front as well. I have so much to do in the next few weeks. The Conference is in Cincinnati and I'm taking Mary and Eric with me. It's an opportunity to spend a weekend with my fellow trach moms and I'm really looking forward to it (except for the part where I have to get up in front of the audience and speak.) I wish Jack could come, but there is no way I can fly with him, and a road trip to Cincinnati is not my idea of a fun summer vacation. Plus, we have our "big" road trip to St. Louis in October.
Not a whole lot to share on the Jack front -- no news is definitely good news when it comes to Jack. I'll try and get some new pics up this weekend.
A cute story Eric's teacher shared with me today:
Last week after lunch, Eric and another boy came up to me. They said that they had been debating whether they should be friends of bugs or enemies of bugs. They decided that they wanted to help bugs instead of hurting them like other people. Then, Eric looks me in the eye and says, "Miss Herbert we have been trying to help the ants and they just don't seem to want our help!" They had been trying to help the ants move to a "safer" location but the ants were not going for it! I suggested that maybe the best way to help ants was to not hurt them. . . I just about died laughing after. They were so cute and so serious!
My friend Cindy posed a question that I will answer sometime this weekend. It's a "loaded" question and one that I want to answer, but one that requires some thought and time to compose a proper response. It's after 10pm now and if I was to try and answer it now, I'd be up until 1am, I'm sure. So, stay tuned for the answer to this question:
Has having two children with special needs changed your political and/or religious views? If so, how have they changed?
I just have to post this "late" question from my friend Kris in PA, because when you get to be my age, you don't get too many compliments like this:
"how in the world do you stay so young and vibrant. Every once in a while you post a picture of yourself and I am always in complete awe of all you do and have been through and how amazing you look! Seriously, I want the recipe."
Ummm . . . photoshopping?! Just kidding. Seriously, Kris "young and vibrant?" I love you! My sister and I were just discussing how old we are. Our 40s just snuck up on us (and a few of us are on the downslide to the big *gulp* 5-0). It seems like just yesterday our kids were all in diapers. In answer to your question: It must be genetics, because it certainly isn't healthy eating, exercise, low stress and plenty of sleep.
Which brings to mind something I recently read in "The Anatomy of Hope" by Jerome Groopman, M.D. There was a discussion on a study of resilience in women. To quantitate the women's handling of stress, the researcher assessed changes in the amount of cortisol, establishing its baseline levels in a home setting, and then in the laboratory during experiments in which the subjects were asked to recall a negative experience. What they found was that women who were classified as "resilient" did not show a sharp rise in cortisol when a negative experience was recalled; this indicated that they would physiologically modulate their response to severe stress. In contrast to the resilient women, were those referred to as "vulnerable" and, for those women, the amount of coritsol that was released was significantly higher when compared to the resilient women. In addition, resilient women were able to more quickly extinguish a startle reflex. The study is ongoing and they hope to address how different affective styles, like resilience, may play out over life in terms of a woman's health.
I've always said that I thrive on chaos and, in spite of the extra-ordinary difficulties and out-of-controlness (is that even a word?) in my life, for the most part, I'm managing to get through it without my body falling apart on me. In the last 10 years, I've probably been sick, maybe 2 or 3 times. I'd have to guess that I fit into the resilient category, which probably accounts for why I don't look 100 years old (even though I often feel like it). So, back to my original answer ........ Genetics.
Speaking of how fast time flies - here are some fun pictures of most of our kids when they were just little ones and a picture of most of the same kids from last Christmas. (Except for my youngest brother, we all got married around the same time and had our kids at the same time).
(that would be Mary in the infant carrier and Hilary in the front row with the blonde curls)
If the two of us could leave tomorrow for a girls weekend to some exotic location, where would we go?
We only get a weekend? If I was limited to a weekend, I'd pick San Francisco. I'm not sure if that qualifies as "exotic". If I could get away for a few weeks, I'd pick Ireland. Again, not sure that qualifies as exotic. I do have plans to escape to the Caribbean next February with my friend Peg. We are going on this 7-day cruise. Celtic Spring - one of the Irish groups performing on the cruise, is a family of kids whose parents I went to college with. You wanna come, Anne?
what's your favourite drink (alcoholic, or otherwise) and who would you prefer to share it with?
I love an ice cold beer -- my favorite these days is a Blue Moon with a slice of orange. I'd prefer to share it with my trach-board girlfriends. Nothing like a few beers to get me talking.
Just wonder how you manage to work and take care of all that you have to do?
I'm wondering the same thing too! I have a lot of help ... my husband, my sister and Jack's nurses make it all possible. My husband works from 7am-4:30pm, so he is out the door early - which leaves me with morning duty, but he is home earlier than me - so he gets homework/dinner duty. I get all three kids up and out the door to school and usually get into the office around 9:15am. I usually don't get home until around 7pm. I have very reliable nurses who show up at my house M-F at 7am - on time and who almost never miss a day of work. Jack's nurses also help out with the never ending laundry when they can. It's not something I ask them to do, but I sure do appreciate it. Our nurse leaves when Mark gets home, except for the days Eric has soccer - then she stays longer (usually working a 12 hour day). I have a sister who has made it possible for Mary to actively participate in Irish dance because my niece also dances and they take Mary along with them for most performances and competitions. Mark handles most the appointments (dentist, orthodontist, doctors) for all the kids but Jack. I handle all of Jack's appointments, meetings, etc. It also helps that I have very understanding bosses and a lot of flexibility in my job. I have an office where I can shut the door and take care of Jack-related stuff when I need to.
I'm pretty good at multi-tasking. For example, while I'm working on this blog response, I'm scanning pictures on the other computer for a video I'm putting together, I helped Eric brush his teeth and got him to bed, I ran down stairs and put a video in for Jack and I started a load of laundry. After all the kids are in bed and asleep - usually around 10:30pm - I spend time working on the many projects I've got going on right now (facilitating a conference next month, my foundation and my "Dear Future Physician" project). I usually go to bed around 11:30 or midnight. Lately, I've been getting up at 4:30am a couple times a week to go to the YMCA to work out for 50 minutes (timing is everything). I make it back to the house in time to get everyone up and start the day.
Bottom line -- I've learned to function on very little sleep!
What is your profession?
I'm an attorney. I practice with a small law firm in a small, but growing city 40 miles south of Phoenix.
What did you want to be when you grew up?
Since as long as I can remember, I wanted to be doctor. Here's my story. Considering how much time I've spent around doctors because of Jack, it's rather ironic, don't you think?
What would your perfect day consist of?
It's sound really selfish, but ... my perfect day would involve waking up (by myself) in some insanely expensive hotel room at a resort on a beach -- the Hotel Del Coronado would work for me. Having a light breakfast, walking along the beach and then meeting up with my sisters (or friends) for lunch. Followed by a pedicure and massage and then a short siesta. I'd meet my sisters (or friends) for happy hour drinks and dinner. I'd go back to my hotel room (by myself), take a long, hot bubble bath in the jacuzzi tub and read a book into the wee hours of the night.
Who was your fave band while you were in high school?
I don't think I really had one. I wasn't your typical teenager. I didn't hang out with friends or go to high school dances. I never even went to my high school prom. I was quiet and not very social in high school.
If you could have lunch with anyone, dead/alive who would it be?
(it better be me ;)
It would absolutely be you my Canadian friend, Tess! After you, it would be my Grandma Betty. She was the best grandma in the world and I sure miss her.
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Thanks to all who posed questions - that was fun.
Life is relatively uneventful these days and there really isn't much to write about. I try and write something at least twice a week, but right now, there's not a whole lot going on and my "profound" thoughts are lost in space somewhere. So, I thought I'd follow the lead of another blogger whose blog I regularly read and ask my readers to comment with the burning questions you want know about me. I'm taking a risk here because if no one wants to know anything about me, I'll feel like a self-centered dolt. But, I'm desperate for material here, so - I'm willing to risk it. Let's give it a try, shall we? I invite you to ask a question of me. I will then turn your questions into a blog post. Let's see how this goes. Anonymous comments are welcome.
To my friends out there who I know read this blog (you know who you are), I expect you to come to my rescue if I don't get any comments, okay?
Last week was my 14th and final IEP for Hilary. We've come a long way from the very first IEP meeting, sitting in tiny chairs around a preschooler-size table at Phoenix Day School for the Deaf. At that time, Hilary had an extensive sign language vocabulary and she was in a total communication program where she was taught to use both sign language and her voice to communicate. Hilary didn't actually start using her voice to communicate until she was about 8 years old (almost 4 years after getting her cochlear implant.) She was around 10 years old before she used her voice as her primary means of communication. Today, Hilary barely remembers any sign language and she never uses it. Hilary's only goal in her final year of high school is to self-advocate. From this point forward, Hilary is on her own.
I think she'll do okay.
From this ~
to this ~
Looks like I'm done with IEPs all together. I finally heard back from the school district regarding Jack. They will be sending me all the paperwork in the mail that I need to withdraw Jack from school, as well as a list of the equipment they want to pick up at my house. That's one charade out of my life.
Jack is doing great and has been waking up each day in the best mood. He's feeling well and is just really happy these days. Life is good!
Wishing all of you a wonderful and peaceful week.
(p.s. thanks for all the "Happy Mother's Day" wishes. You all are such great friends.)
In honor of Mother's Day this Sunday, I share the following thoughts with all mothers, but especially with my fellow sorority sisters.
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
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.
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This sentence really hits home for me:
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.
Amen to that!
No big news to share, so here is a little bit of this and a little bit of that ........
* my brother from North Carolina didn't make it out this weekend as planned. The dork missed his flight and because his stay was going to be short anyway, he decided it wasn't worth re-booking his flight for the next day. He is leaving for Afghanistan next month, so we were hoping to see him before left, but, I guess it wasn't meant to be.
* my sister, Maureen is officially home. Yea! (she moved to NJ a year after I moved home ... I was not happy . . . but, I'm happy now!)
* my mom's latest MRI remains clean (still no tumor growth) Yea! Yea! (she was only supposed to live 6-9 months (according to the doctors) - she is now 10 months post-op)
* I haven't heard a word from the School District since sending my "You're fired" email. Not sure what to make of that.
* I'm one year older as of yesterday (not necessarily a "yea", but it beats the alternative).
That's about all I've got from here. I'll leave you with a few pictures of my beautiful niece - Saturday was Prom and I took some pics:
My Blog thought titled "My Boring" that I posted a while back was chosen to be published in the May issue of Exceptional Parent Magazine (online version). I wouldn't say that this article is my best writing, but, I'm happy that EP thought it was worth sharing. I guess you have to start somewhere, right?
Jack's teacher cancelled today because she had to go to a bridal shower. She cancelled last week because she had a staff meeting and she cancelled the week before because she had school pictures. Oh, and she hasn't once asked to reschedule her missed sessions.
Needless to say "THE" email ending the charade was sent tonight. I'll keep you posted.
And, here is a glimpse into the life of a kid of a blogger (he's learned that every time I pull out the camera, he's likely to end up on the "computer")
Is this not just the most deceiving picture of my little imp . . .
I about fell off my chair I was laughing so hard when I saw this picture. He's the picture of sweetness, eh? Out of all my kids, this is my first kid to wear a cap and gown for Kindergarten graduation. I don't typically order school pictures, but I just might have to order this one for the humor factor.
We had a quiet weekend -- Jack is doing fantastic. My brother from NC and my sister from NJ are both coming into town this coming weekend. My sister is actually starting her new job back here, but her family won't move out until the end of June. I'm soooo happy to have my sister back home!
I'm juggling a couple of projects right now, so I haven't yet composed my "termination" letter for the school district. I'll probably let them finish out this school year and then cut off services after that.
In the meantime ........ onward!
Here's the "real deal" -- the people who really care about helping Jack reach his full potential. 
We had a great training session this evening. It seems that after each session there are more questions than answers. But, we are making progress getting the system set up so that it meets Jack's needs. It's just amazing all the things this system will be able to do. Jack was able to "launch" the internet today. We have "Google" set as our home page but that didn't do much for Jack. I also found out that we can download movies directly to the computer and Jack will be able to select and launch the movies himself. Very cool!
Onward ............
Charade: a blatant pretense or deception, esp. something so full of pretense as to be a travesty.
Consider the following:
The school district. Jack’s team put together an IEP that purports to meet Jack’s educational needs. Only two years ago Jack received 2 hours of speech therapy, 1 hour of occupational therapy, 1 hour of physical therapy and 2 hours of academic services per week. This year, the team decided that Jack only needs one hour of occupational therapy a month, 2 hours of academic services per week, zero speech therapy hours and zero physical therapy hours. Yet, Jack is the same kid he was 2 years ago, with the same potential and with new, state of the art equipment that has the potential to open up a whole new world of communication for him. Despite Jack’s new state of the art equipment (that the school district played no part in helping us get), the team gave Jack no speech therapy hours to help with his communication skills. But, they do have an IEP in place (that I signed) that gives the illusion – at least to the school district – that they are meeting Jack’s needs.
The DME (durable medical equipment) company. Today, I received a voice mail message asking me to call and set up a time for the RT to come out to the house to check Jack’s vents. This is the same company that argued with us for hours on Christmas Eve before it would come out and replace Jack’s ventilator that completely stopped working. This is the same company that fought me about bringing out a new nebulizer machine when it died on us over a weekend that Jack was receiving breathing treatments every 4 hours because he was so sick. This is the same company that repeatedly makes life difficult every time we call when Jack’s (life sustaining) equipment is not working. Yet, this same company wants to come into my house and invade my privacy for the sole purpose of having its records reflect that Jack’s equipment is working – at least at that point in time.
The nursing agency. Several weeks ago I received a letter from Jack’s nursing agency informing me that there was a recall on the model of ventilator that Jack has. The letter referenced a list of serial numbers for those vents included in the recall, yet failed to attach the list of serial numbers. What I didn’t understand was why the information was even coming from the nursing agency in the first place and not the DME company that supplies and services the ventilators. The letter provided absolutely no useful information to me. It served only to create stress by notifying me of a problem that may or may not apply to my situation and then failed to offer any information on who to contact about resolving the problem.
Each example cited above is a “charade”. Each example constitutes a blatant pretense of being concerned about Jack’s well-being when the reality is - the IEP, the monthly ventilator check and the letter are nothing more than a CYA for each party involved. It has everything to do with protecting themselves and very little to do with taking care of Jack.
After nearly ten years of the charades, I’ve had it. Simply put … I’m tired. I’m physically tired, I’m emotionally tired and I’m tired of being angry all the time. I’m tired of everyone telling me what they are going to do and what I am going to do. I’m tired of giving of my time and energy and I’m tired of having my space invaded just so everyone else looks good on paper – so that everyone but Jack is taken care of.
I’ve decided, after talking with Jack’s DDD support coordinator and someone from our vent dependent program, that I am definitely done with the school district. I can’t realistically be done with the nursing agency or the DME company. However, I can put some space between us. I’m not returning the phone call and I called the nursing agency and informed them that their letter was worthless. Does this make me feel better? Does it make me feel empowered? No, it does not. This isn’t about “winning” or having the last word. It is about not participating in the charade any longer. It’s about conserving my energy so that I can get through the next however many years with my sanity in tact. It’s not my mission in life to change “the system”, however, I can - and do - refuse to promote it.
Without question, there are MANY good people in Jack’s life who do truly care about him and who give it their all to make sure Jack reaches his full potential. These are the people I choose to give my time and my energy to. These are the people who I allow in my house and in my space and these are the people who I will be forever grateful for.
And with that .......
I really am done!
As much as I've tried to ignore my loathing of the school district since Jack's IEP in March ... I've now had it. The fact that no less than 7 people are re-arranging their schedules to attend the training session on the eye-gaze system this week except for the therapists from the school district was the straw that broke the camel's back. Jack's IEP is a joke and it's clear to me that the school district doesn't have any interest in helping Jack achieve his full potential. I'm tired of getting the school therapists up to speed. It's all backwards -- they are the ones who are supposed to be the experts. Jack has great therapists through our Department of Developmental Disabilities and he will be eligible for therapies through DDD at least until he is 18 - maybe longer. I'm just not sure if there will be an issue if I tell the school district to take a hike. I'd like to see them claim that Jack must attend "school" -- the two whole hours of "instruction" they give him a week (when they don't decide to cancel because something more important comes up.) Maybe we'll just take the position that we are home schooling Jack ... but, whatever you do, don't tell Eric that :-)
Then there is Hilary. She is supposed to get a half hour of speech therapy a week which she hasn't had on a consistent basis the entire school year. I got a message to call and set up a time for her IEP for next year. I think I'll tell the high school special ed coordinator to take a hike as well.
What I've experienced with both Jack and Hilary and our school district just confirms that we made the right decision 12 years ago when we picked up and moved to St. Louis. I can't even imagine how Hilary would be doing today if we had stayed here in Arizona, but I have no doubt she wouldn't be fully mainstreamed in high school with no support services. No interpreter, no resource classroom and no special accommodations. All of which is remarkable for a deaf kid!
I've been stewing about this all weekend. I'm tired of the charade and I'm not going to play anymore. As you can see, my way of dealing with conflict is to avoid it. I'd rather cut the school district completely out than fight for what Jack is entitled to. I actually prefer to look at it as choosing my battles wisely. I realized years ago that I can't take on every system I encounter as the parent of a chronically ill/medical complex/special needs child. If I really believe something is worth fighting for, I'll do it. I just don't think the services the school district (should) provide are worth fighting for in Jack's case. In any event, it should be an interesting week. I should add that our school district has a reputation of being one of the worst when it comes to meeting the needs of its special ed students, so it's not just my kids who are being short changed.
We did have a GOOD weekend with Jack. He is tolerating being in his wheelchair again and he really enjoyed getting outside for a walk yesterday. I don't know if I mentioned that he was positive for pseudomonas (which shows up as a lovely bright green slim in his vent circuits). He will be on an inhaled antibiotic for a month. I'm really not liking this road we are heading down because Jack had issues with pseudomonas the entire year leading up to his spinal fusion surgery and we could never get rid of it. It was only after being on all the IV antibiotics from his surgery that he finally kicked the pseudomonas. However, I'm not "going there" in my mind just yet.
I'll leave you with a picture of Eric from when we went shopping today. He grabbed the dummy out of the display window and sat down with it for a friendly chat. What a goof!
Have a great week!
This week, I had the pleasure of receiving in the mail, the following letter (in part):
To the Family of Mary Schrooten: As this successful school year winds to a close, it is time to recognize and reward those students who have demonstrated excellence in academics. Mary is one of those students! On behalf of the staff of Hamilton High School, I would like to invite you to the 9th Annual Academic Awards Ceremony. . . . Mary is being recognized for her academic success this year.
Mary is truly my "easy" kid and such a joy to have around. Other than the fact that her room always looks like a tornado hit it, she gives me almost no trouble. She is always willing to help me out and she has such a tender heart for "special" kids. I think I'll keep her!
Jack and I are hanging out together this evening. Mark took Hilary and Eric to the movie and Mary is spending the night at a girlfriend's house. I had a nice day. I met my dear friend, Mary, for lunch at my favorite restaurant - the Cheesecake Factory. I hope you all are having a great weekend. I still haven't finished my taxes. Tomorrow. Really, tomorrow is the day!
Peace my friends.
It’s after 10:30pm and Jack is still awake. No matter what time he wakes up in the morning, Jack rarely falls asleep before 11pm. I told him last night that this has got to stop because I need to get to bed earlier. I try and have his night time routine done by 9:30 or 10pm, hoping that once I turn off the light he’ll go to sleep. Jack, however, has a little trick for getting me back into his room – he finds a way to increase his heart rate. His heart rate will be in the 70s all evening long, but as soon as the light goes off, his heart rate jumps to the 120s. There’s nothing wrong with him that I can tell, it’s just his way of telling me to “get back in here”. It always works. I suction and get nothing, I check his diaper – it’s dry. I check his positioning, the vent circuits and anything else I can think of and everything usually checks out fine. It’s now to the point where I lay down with Jack every night until he falls asleep.
As I lay in the darkness of Jack’s room, the sound of the ventilator menacingly shatters the silence of a sleeping household. As I listen to the ventilator, I think to myself, “How did we get here?” How did that little boy in the first picture on my blog banner become this child sleeping next to me. How? It’s in the darkness of Jack’s room as I lay next to him, holding his hand and listening to the rhythmic whooshing of the ventilator that the tears no one ever sees fall.
The highs and lows of this journey are so extreme and unpredictable. It was only two weeks ago that I was on cloud nine – so happy and excited about Jack’s new communication system. My state of happiness was so short lived. The joy of knowing what is possible for Jack with the new system is tempered by the reality of what is required to make it possible. A lot of work, a lot of time and a lot of patience - none of which are at the top of my “best attributes” list. If only I could close my eyes, click my heels together and wish it to happen.
Not too long ago, I was told by someone that I was one of the most unselfish people he knew. While I appreciated the kind words, nothing could be further from the truth. If I was unselfish, I wouldn’t hate the ventilator, I would be thankful for it because it is keeping Jack alive. Instead, all I can focus on is how it disrupts my life. To me, the ventilator symbolizes everything about this life I hate – confinement, dependence and lack of control. It is a constant reminder of what has been stolen from me, from Jack and from my family because of Jack’s disease. If I was unselfish, I would stay focused on all the wonderful things Jack will be able to do with his new communication system instead of on how much work it's going to take to make it happen. If I was unselfish, I'd stop dwelling on how unhappy I am and appreciate the fact that, in spite of it all, Jack is happy.
My secretary told me today that I was grumpy. You think so? I used to be pretty good at separating my home life from my work life and putting on a good front at work. Not so much anymore.
Tomorrow is another day. Hopefully, this roller coaster I’m on is headed UP, on its way to a happy place. If not to a happy place, at least to a place of contentment. Contentment is easier to sustain.
**************
It's now after midnight and Jack is finally sleeping. Time for me to steal away to the couch in the family room. The only place in the house where I can sleep and be close enough to hear Jack's alarms should they go off, but far enough away that I don't hear that damn ventilator.
Not much to update, but how do you like my new blog look? I spent most of the morning working on it and practically all day hanging out in Jack's bed .... me on my computer, Jack watching TV (and me). I also got everything put together so I can get our taxes done, I worked some on a video I'm putting together for an upcoming conference and I edited and finalized my "Dear Physician of the Future" letter to forward to Dr. M for "publishing". So, while I was on my computer all day, I wasn't completely unproductive.
Jack had a good day and I do feel bad about not getting him dressed and out of bed for a bit. I could say I'm lazy, but the fact is, I'm tired. I'm always tired. And it's so exhausting to get Jack out and about. Jack is just lucky his parents go to work five days a week, or he'd probably never get out of bed. Thankfully, Kristi is working a few hours tomorrow -- she always gets Jack up and moving. Tomorrow is my day to hike, so I'll be up and moving as well. The only bummer is, I have to get up at 5am. Wonder why I'm tired?!
Not much else to share, well ... except that our beta fish - "Finny" - died today (toilet-side services already held, sorry). Mark was all worried about telling Eric. Eric could have cared less. When Mark told him about Finny, the first thing out of his mouth ... "are you going to order me that book or not?" (he wants Mark to order him some video game book). On a side note, Eric asked me the other day "How old do you have to be to be a grown-up?" He was mad because he had to go to school, so apparently he was thinking ahead to when he gets to make all the decisions. Ahhhh, life is just so backwards. What I'd give to not have to be making the decisions all the time!
That's all I've got for now.
I emailed Jack's St. Louis ophthalmologist to tell him about Jack's eye gaze system and to let him know that we had Jack using the device at a distance of 2 feet without his glasses. I wanted to know what the optimum distance is for Jack with and without his glasses. He told me that with glasses Jack sees best at 2 feet and without his glasses he's not seeing much at 2 feet because he is so nearsighted. My question - why would you give Jack a prescription for glasses that gives him his best vision at only 2 feet in front of him? What does he see with his bifocals ... 2 inches in front of him? It makes me sad having just realized that Jack spends the majority of his day in bed watching television and he can't even see the darn thing. What's worse is that Jack doesn't even know that what he is seeing is not as good as it gets. It's just not right that this child cannot talk to me!
So now I have to psych myself up to call the local ophthalmologist and ask him for a new prescription for glasses that will allow Jack to see the distance from his bed to the TV. We'll then change out his glasses depending on what he is doing. Hopefully the guy won't give me any grief. Eventually, Jack will probably need new lens implants that will provide the best vision at what we determine to be his most ideal distance. I'm thinking it will be the distance to his eye gaze system. I anticipate several trips to St. Louis over the next year or two.
In other news .... I shared my "Dear Physician of the Future" letter with one of Jack's former STL docs (who is now the Director of Critical Care Medicine at Children's Hospital of Los Angeles) and he wants to share the letter on the PICU listserv and post it on a website for pediatric critical care docs. He said "you could reach thousands of doctors by this route". He is a doctor who totally "gets it".
That's the update from here. Life continues to move along at breakneck speed here at the Schrooten Ranch. Where do I get off? I am so ready for a vacation all by myself for a few days!
Peace.
Thank you for riding along with us on our journey.
