Driving down the highway

We had left work and were off to pick up our beautiful daughter from the sitters. Steve and I have the luxury of carpooling together which is sometimes the only time we get to really talk to one another. This was 3 years ago, and I still remember it so well. We had just found out that I was pregnant again and we were totally excited. Would it be a son to complement our daughter? I thought about telling all my family and how exciting that would be. And then I thought about how lucky my family was, out of my 3 siblings, all the children were relatively healthy and happy, normal kids. I blurted out to Steve something on the order of: "You know, my family has been really lucky in the kid department, with the exception of a few minor issues, we have had very little go wrong. My nieces and nephews are all healthy. It's almost like my siblings were all so lucky - odds are in my favor that I won't be." That thought still lingers in my mind. Steve remotely remembers this conversation. Did I know something was up even back then?

I remember when they first told me at the ultrasound that we were having a boy. The dark room glowing from the light of the ultrasound machine, I could see my dear husband smiling like a young boy on Christmas morning. And if you knew my stoic dear Steven, you would realize how big that is.

And then there was the call from my OB/GYN. You're almost 40 weeks, she said. Baby is measuring really large, she said. You had a difficult birthing with your last one. Lets do a C-section. How I cried. I called everyone and asked what to do. Safety first, they all prudently reminded me. Stories of shoulders getting caught in the birth canal, broken collar bones, nerve damage. Go ahead I told the OB/GYN. Schedule me. I never had the opportunity to go into labor.

And just like that - he was here. Beautiful with 10 toes, 10 fingers, APGAR scores of 9 and 9. Big bobble head. And 9 pounds; no where near the 10.5 pound bundle they threatened me with. He nursed well. He slept well. He was so quiet compared to his sister who left the womb screaming and hasn't stopped since. He smiled at 5 weeks. Relief. He sat up and cooed and smiled at everyone. My beautiful boy. OK - so he didn't crawl until late. Some kids don't the pediatrician said. My mother-in-law told stories of cousins who scooted much like Zach did. All other milestones appeared on target. He took is first steps right at 12 months. He was saying Mama, Dada, baba, sit (he would yell at the dog). He smiled. He laughed. He was perfect.

A friend whose wife had given birth to their own little precious boy bundle just 3 weeks prior to Zach called one day. They were concerned about K.'s speech. Could they come over for a playdate and see how the boys compare? Sure. They come over. Zach says more words than K. K. also has some strange tendencies - like going through the house and closing all the doors, over and over. K. has temperament issues. But alas, they are not all that different with milestones.

Certainly, nothing was wrong. We were both used to our wonderfully intelligent, early speaking daughters. K. started early intervention for speech therapy. We held off thinking he was just quiet like is old man. Finally, after hearing stories of K's progression with the speech therapist - I give the doctor a call, we get a checkup, and he says go for it. Early Intervention comes and does their assessment and says speech twice a week for a half hour each. OK. The service coordinator remarks that we'll have him talking in no time.

If only that was true.

A Kid Named Sophie

So, Sophie, or Sophia her given name and what she prefers to be called, was always ahead of the game. She was always meeting and often exceeded the defined development milestones since an infant. At her well checkup for age 3 - I noticed that she could be doing better with her coloring. At age 4 - the milestone was that she could make stick people - which she is far from doing. She is still mastering making circles, x's, and the occasional letter (so far q and h).

After a brief conversation with her pediatrician, he recommended that I contact the school district for an OT eval. He said it was likely that she wouldn't require services per se, but they make provide materials to help work with Sophie. Sounds good.


Yup, sounds good. Too bad it wasn't the full feel of what was/is about to transcend.
4 separate evaluations - one by a psychologist, a speech therapist, a special ed teacher, and yes an OT. I needed more appointments like I need another orifice; Zach, with his two appointments a week, and the speech therapist pushing for a third with an OT, the dog to the vets/groomers, mom and the cancer associated appts (drs visits, tests, xrays, ct scans, pet scans, surgeries, various treatments, getting medications and devices, getting hte house settled for her, taking care of her financial tasks and maintenance issues around the house, trying to keep her out of depression - socialization, getting her books, etc.) , trying to get our house settled (trying to furnished and decorated - has anyone tried to get a painter in Syracuse recently??? and looking into renovations), while trying to hold down a job which has just turned topsy turvy - new position, new division, new building, lost my office and now in a cubicle (blek), NO babysitter and no availability at local day care, and just other life appointments. So when I recently broke a toe and didn't go to the doctor - I was told by many - you should go to the doctor - ha ha ha ha ha. For myself? Well, a scratch to the cornea did eventually lead me to take the time for an hour long visit with a doctor. Alas, this could impede on me providing services to others - so I had to have it taken care of.

OK - back to Sophia. I have been told we have to meet with some sort of committee at the school district to get the results of all these evaluations. Yes a committee - some sort of panel of all the evaluators, and educator, a parent of a special needs kid, and I have no idea who else. I find this all overkill. I understand why these things might exist, and even their utility for certain circumstances. But I am so tired of process/procedures circumventing logical, thoughtful individual approaches to problems. It is showing up in life more and more - and leading us to be nothing more than mediocre at best. I have this same frustration at work very frequently, and in life in different ways - anybody try to do their taxes and read the accompanying documentation? YIKES. And I have a masters degree - how does the average Joe handle all this?

She superseded some of the evaluators tests - but showed frustration in other areas. Note: frustration, not inability. The OT commented on her not being able to use scissors well. The girl has only had scissors for about 2 months now - she is such a spaz that I was afraid to give her sharp objects intended to cut, especially when I have an almost 2 year old that I need to keep an eye on and make sure she doesn't give him a hair cut. (This being of particular importance since Zach's hairline could be better.)

Did I fight the system. No. I instead am trying to tolerate it by going through the motions, as much as it interferes with life, and hope that all is well in the end. I need this positive outlook right now. Lately, it is very hard to find inspiration and hope with so many things going on.

Therapists, therapists, therapy all the way

So that previous line should be sung to the melody of "Jingle Bells" to get the real effect.

We had Zach referred to early intervention for speech delay. This required a full evaluation that looked at not only communication, but physical, cognitive, social-emotional, and adaptive issues. According to them , the speech delay was the only issue they were concerned with. So here we are 2 months later, with speech therapy 2x a week. He dislikes his speech therapist. If I am around when she has her visits, he cries, and begs me to take him out of the room. He has made no language progress at all. Zach prefers the company of men, with one major exception, and that is me. I can tell you at times it drives me bonkers, but I also must confess that it snags at a heart string or two for some reason. I love my kids more than I ever thought I could love anything, and when I see this sort of attachment, it does feel like some kind of reciprocation. Hopefully, none of this is unhealthy. I digress. So, there are no male speech therapists. This in turn has prompted my speech pathologist to say we need OT. Is she right? Well, perhaps, but I don't think so. It just leaves me wondering how he would deal with yet another stranger in the mix. Hmmm. Child prefers men and has stranger anxiety - I know let's bring a strange woman around to teach hi hot to adjust.

Sometimes I wonder if I should have kept my mouth shut, and just let the kid naturally progress. Sometimes I wonder if I should just stay home and....
Can't think that way. At least not now. Too many bills to pay.

Then there is Sophie - this will require a part deux to get through that story.

Finding Mary Poppins

So, when searching for day care options make sure you take a belt of scotch on your way our the door to interviews. After previewing candidates, and narrowing it to three, I decided a visit to our final 3 contestants was in order. So, who did I choose. No one. I extended my MIL's stay for another month to figure out just what the heck I am going to do.

The gotcha's?
Candidate #1 - I swear there was pot smoke or something going on in that house. The fact that her 4 year old daughter came out at one point with incense sticks made me wary. Then a review of craiglist where I originally came into contact with her had accusations of my suspicion - pot smoke. There was a reference to check out her myspace page, which I didn't. Enough drama for me. BTW- I don't really care if someone smokes pot - but all I could think about was some major partier watching my kids after a long night, and Zach falling down the stairs and her barely noticing.

Candidate #2 - House was a little nuts upon our visit. (A house with 5 kids - somewhat expected.) She was looking to take on more than my 2 kids and she had 5 of her own to boot. Yikes. Open backyard that went into the old Camillus Cutlery. Hmmm. Dad has guns in the house. uh oh. I am not against guns - but could just envision one of her older sons getting curious, Zach being Mr. Zippy getting out of sight for bit, and then wammo. No no no.

Candidate #3 - I felt this woman could be a great friend. Loved talking to her. However, her kids seemed so calm - could she handle my little spazzes? The fact that they were doing construction on their house- and my two ultra-curious George's. uuh oh. Very nice dog who looked like it might have had some pit bull now having to deal with my two spazzy kids. Hmmmm.

The pot smoker, the guns, or the pit bull. We miss Nono and Nana so much!

All of these candidates seemed nice. I don't think any of them would have been abusive. However, my comfort level was just not there. Could it be with anyone? I have basically only left my kids with family. Will I be able to get over my trust issues and get an outsider involved with my family? Wish Zach was talking more.
That would help.

I wonder if someone with sexual assault experiences can ever trust anyone. Will this impact my kids? I want them to have wings, and I feel as though I might be their anchor. I cannot let this happen.

There is good in this world, good people that is. I have to pray that God can send one of them my way.

Coming at me from all sides

I've decided that the journey of life is difficult no matter who you are. I think even those beautiful people celebrities have their hardships, the a$$hole CEO's who make way too much money and all at the regular Joe's expense, well I'm sure they have a struggle or two. After all, money and fame are not what makes you happy. It's cliche, and certainly counterculture but very true, and I have always felt that way.

So, Zach, my beautiful baby boy is in speech therapy twice a week, and now they are pushing occupational therapy. Good grief. He screams the whole time his speech pathologist is over, and thus he needs OT?

The pediatrician recommended my daughter go for an OT eval because she is behind the milestone for a 4 year old to draw a stick figure. So what does the school district do? An evaluation by a special ed teacher, a speech pathologist, and a psychologist. Huh? Man, I think I have found the latest way to line your pockets boys and girls. This is far beyond what she needs - and note: there is no OT eval!?!! Inefficiencies up the wazoo..

I broke my toe last week. It is still bruised and I cannot put any weight on it. So what does everyone say to me? "You should go to the doctor." So he can do what? Take an X-ray and confirm my diagnosis only to tell me to take pain killers if it bothers me, stay off of it for awhile and take note of any significant changes?

And I am just not visiting doctor's offices enough right now - two kids who had coxsackie, Steve's grandma who was ill and subsequently passed in July, and now my mother with lung cancer. I am tired of appointments, especially when they are not scheduled according to your schedule.

"The therapist only sees anyone at 3 pm on Thursdays". How flexible of her. None of these people would make it in the work world that I come from. How do things get done when everything is so rigid?

And maybe another post, I can discuss the great babysitter/nanny hunt.

All Hands On Deck

In the summer of 2007, we made a decision to move, and went on to decide to move to my home town. We loved living in the town we lived in, but we had certainly outgrown our house. But more pressing was my desire for my kids to get to know their grandmother more. I have wonderful memories of living near my grandparents, and wanted my children to have some of these same opportunities. My mother-in-law lived in North Carolina and we weren't about to move down there. I knew my mom was getting wary of the drive across town to visit us. I also had suspicions that Mom might need some of our help. She had been looking tired, and had recently disclosed that she had emphysema in a very casual conversation to me one day that knocked my socks off. I couldn't believe she had known and hadn't told me right away. I called my siblings who sort of knew something was going on. That's Mom. So off to my hometown we moved and began our journey.

Seasons came and went and finally summer had arrived. We had lost of fun getting used to our new neighborhood; collecting polliwogs from a catch basin and enjoying walks around the wooded block.

My Mom called an "all hands on deck" meeting at her house one evening. This can't be good, I thought. We all knew something was up and made idle chatter about our comings and goings with one another. Finally, Mom broke the chatter to tell us her news.

She had waited until my niece J had her wedding to deliver the information so we all could enjoy the wedding. She had been to her family doctor. She had cold-like symptoms for awhile, they had done a chest x-ray- saw something, and the dcotor had made the call to do a PET scan. Mom said "the PET scan showed activity." We all sat in silence around the table. That was it. No other information other than to say she had an appointment with a "lung doctor".

I went home. I knew what a PET scan was, but I wasn't sure if anyone else did. Did my mother know and was she just using gentler terms to describe what was going on for our sakes? I called my sister, and asked if she knew what a PET scan was. She told me she had just googled it, and yes she knew. I asked her if she though Mom knew. She wasn't sure.

A PET scan is not an official diagnosis tool - it is a screener. It indicates masses and metabolic activity. Anyone who knows anything about cancer knows what a PET scan is. And they know also that it might as well be a diagnosis tool. But alas, only a biopsy can tell "for sure". If I was a betting man - I would guess the need to verify through a biopsy is more for liability/insurance sake than it is for the medical practitioner to know if it was benign or malignant.

So off to the pulmonologist Dr. F. As they ran some preliminary tests, the nurse practitioner walked in. She asked Mom a series of questions. She asked about Mom's previous tests. This is when it hit - Mom asked the nurse what a PET scan was and what "activity" meant. My heart sank. She didn't know. I watched the nurse looking down at her paperwork briefly stop writing to field Mom's question. She realized too that Mom didn't know what was going on. The nurse gave some technical answer and then told Mom that the doctor would go over her results with her. What a punt, but I can't say as I blame her.

The doctor came in and gave the likely diagnosis, and also indicated what next steps we need to do- mostly a biopsy to confirm his suspicions. Thus began the whirlwind of activity that would encompass our family for the next few months.

Goodbye Grandma Helen

Steve's grandmother, 97 at the time, had taken a stumble at her apartment and ended up in the hospital. Thus began her gradual descent. Steve's mom being in North Carolina couldn't tell what was going on with Grandma - so off we went to Rochester and continued to check on a series of falls, hospital visits, nursing home episodes, and her eventual death. Grandma Helen was a terrific woman - and I was so glad to meet someone like her. She did not take life for granted. I remembered the times she would call when Sophie was an infant, she would call and check in on what was new with Sophie. I was always amazed at how much she remembered of child development and milestones. She was so hard working! Only at the very end did I ever see her feel sorry for herself - and even then, she would self correct and say that others were less fortunate than herself. She was not afraid of death. She was afraid of losing her memory and wrote me a note saying as much. She was a woman of terrific faith and led a life like more people should. It was hard running out to Rochester frequently to see what was up - but I only wish we would have done it more. She deserved a lot more than we could give her.

God Bless you Grandma. We love you and won't forget your lessons in how to live a life.