Category Archives: TBT

TBT–Dear Ann

It’s Throw-back Thursday. A day to revisit an older blog post. This one is from when I a was a tad, um, infuriated with a celebrity.

Originally posted 23-OCT-2012

Dear Ann,

May I call you Ann? I feel we can be informal since you feel so comfortable insulting my child. I mean, really, only family should be able to make us think that we are not good enough. On the other hand….

You, MS. COULTER, are not my family. You are not of my world, my life, my heart.

Because you, Ms. Coulter, from your bully pulpit are comfortable enough behind the camera. But have you ever had to face the affect of your insults and disparaging remarks? When you attack public figures, I usually give you some leeway. After all, they are grown-ups who have had to develop a thick skin in order to navigate life in the public eye.

But my child? My child, Ms. Coulter, does not and should not ever be the brunt of your pitiful attacks. Neither has her sister. A sister who knows that calling some one a retard is wrong but not why. You, Ms. Coulter, do not have to explain to your 9-year old that her sister is not retarded but intellectually disabled.

You see, Ms. Coulter, in your complete and utter ignorance, do not realize that when you call our President a retard (which by the way, should be treasonous no matter what your political leanings) you are not insulting him. You are, in fact, insulting the estimated 2.5 million US citizens you do not even acknowledge.

That is the sad truth, isn’t it Ms. Coulter? You do not SEE those who are intellectually disabled. You only see your own agenda and how to get your name in the headlines. Doing it by insulting my daughter and others like her, that is heinous.

I know the arguments for using the word retard. I have this discussion with friends and family members. I am from the generation where you could call some one “gay” but not mean homosexual. I am from the generation where retard was an insult you called your friends in a lighthearted manner.

But, unlike you, Ms. Coulter, I grew up. And unlike you, I am lucky to have an intellectually disabled child who only knows love. But some day, unfortunately she and her sister will come into contact with some one like you. I fear that day. I fear the day when some one looks at my daughter and sees a RETARD and not a beautiful girl.

I ask you, Ms. Coulter to look at this face:

and tell her sister that her beloved sister is retard. Because that is what you did when you thought you were insulting the President of the United States of America.

From a mom who knows better,
Kerri

Throw back Thursday–a year ago

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.

TBT, blog style

(Originally posted 10-AUG-2012)

A year ago today Boo had surgery to release a tethered spinal cord. I will never forget how this one thing devastated me. All her other health crisises were just that, a crisis. I had to keep calm, carry on and be the rock for not only Boo but for every other family member too.

But this, it just took the rug out from underneath me. I am still not sure why. I remember when GI (of all specialities) wanted to do the MRI of the spine to see if, by slim chance, Boo had a tethered cord. Her doc had recently been to a conference where they found that children who have extreme bowel issues ended up having an undiagnosed tethering. For some reason (medical, beyond me) the nerve endings interfered with the bowels.

Since Boo had to be sedated anyway, I e-mailed all the docs and asked if anyone else wanted something done to schedule it for the same day. Neurology decided to rescan her brain to see if there was any change to the corpus callosum (the white matter in between your gray matter, Boo’s was too thin).

Since we were told that the corpus callosum could not ‘grow back’ I expected to hear that Boo’s brain still showed evidence of a lack of CC. I figured the spine MRI would be fine.

I couldn’t have been more unprepared.

The brain MRI showed that the corpus callosum had completely grown in. That it was, for lack of better terminology, perfect. BUT the spine MRI showed a tethered chord and she would need surgery.

Here was the kicker, unlike all the other crisises, the decision for surgery was up to me. Not the neurosurgeon (whom I despised) that went to an actual medical school, but me. The mom. The one without a medical degree. Sure it was up to husband, too. But let’s face it, this was a decision that I had to make.

We were told that the tethering was “POSSIBLY” affecting her bowels but they didn’t know for sure. What they did know was between now and when she was in her late teens she would most “PROBABLY” need to have the surgery. It was up to me to decide when and if. That the surgery was “no big deal” he did it all the time. (yup, I still dislike him) I replied that he didn’t operate on MY daughter’s spine every day of the week and this was major surgery for her, if not for him.

Hello, can I say again that I do not have a medical degree?

Since I (inappropriately) despised the neurosurgeon we met, I got a second opinion at another hospital. Where, I basically got the same diagnosis. However Doctor #2 felt that the tethering was more severe than what doctor #1 thought. She said that if it was her daughter she would do the surgery sooner rather than later. She went in to all the risks associated with waiting. She emphasized with how hard the decision was to make. I loved her.

But off we went to our local Pedi for his opinion. He told us that when the number one doc in the country tells you your daughter needs surgery you don’t go against his recommendation. And as much as I loved doctor #2, our pedi (correctly) felt that since Boo’s 13 other doctors were at hospital #1 we should stick with doctor #1. Because in the case of Boo, if something can go wrong it will.

I went home and broke. Literally fell to the floor and broke.

That was when I learned how strong and how much I depend on my BFF, Tia. She let me break and was strong enough to carry me through the hardest (at the time) decision. It was then that I realized that without my ‘village’ life with Boo is impossible.

I decided to do the surgery sooner rather than later. I felt that the pain would be more easily managed, that because she would have to stay flat in bed it would be easier to do at 2.9 than 18 years. That if something went wrong, I would rather have her not know. My rationale was Boo had just started walking independently that week. If she was unable to go back to walking afterwards, in my mind, it would be better not to have walked. I was probably wrong in all of these thoughts. But they were mine, honest and true.

So a year ago, on August 10th Boo had spinal surgery.

She made a speedy recovery. On day 2 of laying flat, the minute she was allowed to sit up, she did. And promptly tried to break out of the crib. She loved the Princess Carriage (I put in a lot of miles walking the halls).

So, Doctor #1 was right. The surgery went fine. He was wrong about some things. Turns out that Doctor #2 was right, the tethering was much more severe than he thought. The surgery lasted much longer and was not as “quick and easy” as he thought it would be.

The nurses at Children’s Hospital Boston are simply the best. Not only did they not let doctor #1 discharge her when he wanted at post-op day 2. They went over his head to keep her to post-op day 3 as per protocol and she was beyond constipated. They were loving, supportive and thought of everything. Even her bandage!

The surgery also did NOT fix her bowel issues. Although she did grow an inch, so while she is still “short” she is growing. Hey, I take my side benefits where I can. I still cannot stand him, but my daughter can still walk so it’s all good.

The surgery went so well, in fact, that as soon as we got home Boo was climbing on top of my kitchen table. The next week she fell down the stairs and gave herself a nice concussion. But the spine was fine.

And so was Boo. We survived not only the surgery but the experience. I will never forget how happy I was to be discharged from the hospital. I will never forget how when I needed strength Tia was there.

I will never forget that it okay to break once in a while. As long as I have Tia.

TBT–Out of the Mouths of Babes

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Welcome to Throw Back Thursday, blog style.

(Originally posted 18-JUL-2012)

Abby is taking some summer help in math at a local school. This morning when I dropped Abby off she was telling me about the kids in her class. Some were from her current class and others she didn’t know. Abby said that there was only one other girl, a bunch of boys and one weird boy.

Weird boy, I asked, do you mean the boy with Down syndrome?

What’s that? Abby replied.

Well he is special needs, like Boo, I explained

Oh, is that why he has a teacher just for him in the class? (Yup) That makes sense now. I thought there was something different but couldn’t figure it out. Why didn’t they tell me so I could help him?

This conversation floored me on many levels. First, Abby has intuitively known that there is something special about Boo and has accepted her without conditions. I automatically assumed that she would recognize and accept it in another child. Second, Abby attends enough of Boo’s therapy appointments to see other children like this boy. I was completely astounded that she even had to ask, or worse in her mind label this boy as “weird”.

Abby has been a staunch defender of Boo. She would never let one of her friends use that term with her sister, so why did she do it with a boy she just met? Have I failed in some way in to prepare and nurture her to accept all others like she does Boo?

Of course, I asked Abby. Not that specifically, but why she did she not understand that this boy was special. She thought because he was so big and not little like Boo he was just a boy. I asked (just to make sure) that she hadn’t made fun of this boy. She was quick to say no, but that she wished that the teacher had told her because the other boys in the class did. Abby was so cute, telling me that she would make sure it didn’t happen again! We had a long talk about Boo and how would Abby feel if one of her classmates called Boo “weird”.

But it made me think, is inclusion working? Are the teachers and other parents explaining to their children that not all children can run, read, speak like others. Whose responsibility is it really? Mine, in some way because while I can educate/prepare Abby and she can then teach her peers. But neither Abby, her dad or I can go into Boo’s class and wake up the other children/parents. I can only be responsible for the children who interact with Boo in my presence.

Is it the teacher’s responsibility? Certainty, but how can they do this without embarrassing (not the right word, but hopefully you get my point!) the child in question. Abby thought the teacher should have let the kids know. But by privacy laws, they cannot.

I think the biggest obstacle is that the other parents are not on the playground or in the classroom with their children. So they might not even be aware, like me, that their child may be prejudging some one. Think about it, if you do not have a special child would you think to educate your ‘typical’ child about a child with Downs, CP, and autism or like Boo one who is undiagnosed? I will admit that before Boo I cannot honestly say I would have said something to Abby until she asked/made a comment in my presence.

I think as children get older they may become more aware (and yes, mean). But at Abby’s age it is just a sense of innocence where they don’t really notice differences in others until the difference is glaringly obvious.

Boo is in an integrated preschool with a not so equal ratio of special/typical kiddos. Even there I notice that some parents look at us askew when Boo is not participating like their ‘typical’ kid in the class. Once a child asked their mom what was wrong with Boo and the mother, instead of educating, told the child to ‘hush’.

So I don’t know what the answer is, if integration is worth it or how to educate the world at large that Boo just has a different sense of typical.

TBT–The Perfect Day

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. I hope you enjoy the trip back in time.

(Originally published 24-JUL-2012)

Yesterday I took the day off. Completely off. No work, no housework, nothing but spending the day with Abby.

First we dropped Boo off at her school. Then….

We went to Dunkin Donuts and discovered the joy of the new Oreo donut. We went shopping. When offered the choice between doing our nails or going to a playground she chose the playground. We went to lunch, her choice where she could make our own pizza.

I was told I was the best mom ever (I am writing it down to remember when she is 16). I was told that we ‘have the most fun together’ (I am saving this for the college years).

Then I was told something was missing. I’m biting my tongue to not tell her to be selfish when she says:

The only thing missing was Boo.

So we went to get Boo from school and finished the perfect day.

TBT–Freeloading

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Welcome to Throw Back Thursday, the Blog edition. A walk back in time to before any one read Undiagnosed but Okay. I hope you enjoy the trip!

(Originally posted 12-JUL-2012)

Our friends have a house at the beach. Every year we go and freeload for a couple of days. Abby is always excited to go and so am I. Who doesn’t love a beach house? Cocktails, sun, sand, surf and a clean bathroom you don’t have to share with strangers.

Boo would rather be in occupational therapy. She hates the beach! The past couple of years have been torture for her. Last year was probably the aha moment where I realized that Boo not only had sensory issues but that they could and would be paralyzing.

This year was much easier for Boo. During low tide, as far from the water as possible. She stood on the hard-pack sand!

All Abby wanted to do was surf. Even crazy puppy got in on the action (Boo was no where near the water, preferring to stay at a safe distance!). As the tide came in, Boo felt that it was safer back at the house, so she stole Allie’s board…

But Boo spent the day at the beach and was content to go home and relax with her pup. We are going back this weekend. We hope to get Boo a little closer to the water!

TBT–That Parenting Manual needs updating

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. I hope you enjoy the trip back in time.

Originally posted 23-AUG-2013

You know how before you give birth some one gave you a What to Expect book? You also probably did a birth class. None of which prepares you for life with an actual child.

Last night Boo woke up at midnight and proceeded to throw up every 15 minutes for the next couple of hours. Then she only woke every 45 minutes to throw up. Eight hours and four loads of laundry husband comes home from his shift. As I lay Boo on the couch to go to work, she throws up one more time….all over me.

Second shower and a change of clothes and off I go to my paying job. You know when you get into the office you ask the question, how are you to your coworkers. Not that you actually care after being up all night, but just to be polite.

And then that one coworker, the one without children. The one who is unmarried and lives with the dog that is her life. You know the one that I mean. The one that has time to exercise, take long walks, drink her wine without interruption. The one who has the life you used to have before children. Let alone a sick child. She proceeds to tell you that she is ‘exhausted’ but ‘surviving’.

And all you want to say is survive this (with the one finger salute) and walk into your office. Instead you empathize and escape to your office as soon as it is polite. You walk into a call from your husband saying Boo has now spiked a temp. What should he do? To another call saying the contract is ready to be picked up and that a hundred emails that tell you other things need to be done before you can escape to take care of the most important part of your life.

But you need the paycheck. So you put your big girl panties on and go to work.

And think to yourself, I’d really like to meet the author of that book, because they have no freaking idea of what to expect.

Throw Back Thursday–Independence

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. Posts from before anyone read my blog. I hope you enjoy the trip back in time.

TBT Blog Style

(Originally posted on 03-JUL-2012)

Tomorrow, July 4^th, we celebrate our Nation’s Independence. The preparations got me thinking of how, as parents, we provide the tools for our children’s independence. Even though it breaks our hearts, a little, every moment we are preparing them for growth.

Allie is already an independent 8 year-old, going on 45. Preparing her to be independent means giving her the confidence to know she can do anything she sets her mind but nurturing the desire to include others on her journey.

Naturally, I wonder about Boo’s Independence Day. Will she ever have one? I know she is only 3! But I am a worrier and a planner. I want to know today what I am doing tomorrow. This is where Boo’s needs fit perfectly with my own. I need to plan and she needs a plan for every day!

One of the difficulties I face with Boo being undiagnosed is I do not know what her future holds. I do know that all children’s futures are uncertain. While I can imagine Allie being a wonderful dictator to a small Caribbean nation (hey, I want to retire to a beach and she loves ordering Boo around!), she may just run a household. And that’s okay. And it is okay that I will always worry that Allie is living a fulfilled life. That’s the definition of MOM, or it should be!

Boo is another worry. I just don’t know what her expectations should be. Should I expect her to be reaching for the stars or just concentrate on her teaching her to hold our hand? A year ago, Boo was using a pediatric walker. Today she is walking independently. This is where I have to stop and acknowledge her success. She may never reach total independence. But she will have moments of independence that I should remember to celebrate in small ways.

I have begun to set short-term goals, rather than long-term expectations.

Tomorrow, while I am attending the parades and fire department musters and watching the celebration of our Nation’s Independence Day, I will also remember to celebrate Boo’s accomplishments. In just a year she has become independent in:

· Walking

· Climbing on-top of my kitchen table

· Signing “I want” and following up with verbalizing “cracker” (or her version of the word)

· Getting herself into and out of her toddler bed

· Opening her bedroom door

· Drinking from an open cup

Happy Independence Day, Boo! I cannot wait to see what the next year brings.

Throw back Thursday–On Display

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. I hope you enjoy the trip back in time.

//www.youtube.com/get_player

(Originally posted on 30-JUL-2012)
Right now I am reading a great book with an odd title. It is called, My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kidswith Disabilities by Yantra Bertelli, Jennifer Silverman and Sarah Talbot . It is a collection of memories by moms and dads who have done it. Lived the life as a parent of a special needs child.

In the book there is an offering called Glass Houses by Sarah Talbot. She tells of how instead of institutionalizing her son, they basically turned their home into an institution. The State they live in actually agreed that it was less expensive AND more healthy to raise their son at home and bring the services (including aides) to him. However Caleb is not their only child. So by turning their home into the institution they also (for lack of a better word) institutionalized the entire family.

Not only did the parents lose any hope of privacy, so did the other children.

It made me think back to when Boo had Early Intervention coming to the home 3-4 times a week. And how (especially in the beginning) I would “company clean” the house the hour before they arrived. You know what I mean, when you know your MIL is coming to visit so you make sure if she “unexpectedly” opens a closet nothing will fall on her head. You know the stuff that is generally on the floor/counter space? I can even recall telling my husband once not to use the bathroom! And forget the semi-annual evaluations when we not only had our regular EI Specialist but 3-4 more people coming to (in my mind) inspect us while they evaluated Boo.

The day after Boo’s last EI appointment was the last time my kitchen counter was spotless.

But reading Glass Houses brought the memories back and made me think of how under the spotlight we are. Even though EI is over (thank goodness!), we are still under the “view” of the various therapists, teachers and aides. I am sure parents of ‘normal’ children probably have moments of second-guessing themselves. However I bet it doesn’t happen everyday at therapy or when you talk to your child’s aide and realize that you forgot to give the child a bath that morning because you had both been up all night. Let’s face it, sometimes Boo is lucky to have on matching socks!

When we got drafted (since I know I signed up for the child who slept at night, not the one who wouldn’t for going on 4 years) into this life we never expected that on top of everything else we would be opening our lives to constant surveillance.

We have to worry that Boo will bite someone other than herself. We have to worry that when she goes to school, the doctor or a million therapy appointments they will not believe the bump on her head came from herself and not us. We worry about going to the ER that they will think we are a hypochondriac or worse. We worry about that woman in the parking lot who doesn’t understand that we are not hurting our child as we force them into the car seat.

When Boo was in the NICU I worried A LOT. Over the years I have worried more. But back in the NICU I never imagined that when Boo entered our life we would be opening our lives (and Allies) to life on display.

I better make sure Boo’s socks match.

Throw back Thursday–Summer

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Welcome to my version of Throw-Back Thursday, blog style. I’m taking Thursdays to revisit some older posts. I hope you enjoy the trip back in time.

Throw Back Thursday, Blog Style

(Originally posted 20-JUL-2012)

I love that line in “It’s a Wonderful Life” when the old man says to George and Mary, “Aw, youth is wasted on the wrong people”.

I think the same can be said about summer vacation. Abby is ‘BORED’ and you know it is bad when she is not only bored, but bored in capital letters! And for the life of me I cannot think of why! She has played in the pool—granted the kiddie pool because we cannot trust Boo or crazy puppy with the “big” 4ft pool, gone to the playground with Daddy while Boo is in school, gone to the marina and the fish hatchery, played with her Barbie(s) and the list goes on. And let’s not forget the week she was a freeloader at our friend’s beach house—while I was at work!

I offered to give her a list of things to do. But she wasn’t too impressed with my ideas:

Clean her room
Laundry
Sweep up the dust-bunnies created by crazy puppy
Clean Boo’s room
Cook dinner
Wash the windows
Clean my room (hey, why not?)
Clean the bathroom (okay, NO ONE wants to do that!)

If I had summer vacation, I would be ecstatic to be BORED. I would read, yes read, a book that had no meaning at all. I would go for walks on the beach. I would…I don’t know what I would do because it has been about 25 years since my last summer vacation!

But I bet there would be a nice glass of pinot grigio