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.
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?
Thank you for riding along with us on our journey.
