Sharing the good days

I inadvertently uncovered my Christmas present from Rich's secret hiding place.  His secret hiding place in the back of the van. The van full of kids toys, balls, lawn chairs, etc. that I had to get out of the van so I could put some boxes full of donations to Good Will.

I found a Target bag with a box in it that looked like a shoe box. I took it inside and looked to see which boy he bought them for, which is when I realized it was not a show box, but a box holding one of these.

 My first thought was "no way." We can't afford a new camera. Apparently it was a floor model that was being sold off so Rich got it at an incredible discount.

Yesterday I read enough of the manual to be able to put the battery and memory card in, and today I took it with us to Noah's soccer game, an open house at daycare, and to visit Rich's mom.

It is awesome! What an amazing difference from my other cameras. I hate that I found my present early, but I love that I have it to use now instead of having to wait.

So here are a few of my fave pics from today:

 It just blows my mind how grown up Noah is looking.

Today was a very good day for us, so I'm happy I can share some of it with you in pictures.

I'm nothing special. I'm just a mom.

I have had some big thoughts rumbling around in my brain lately. Blogworthy thoughts. Hopefully dialogue provoking thoughts.

I think tonight I'm going to start with the least provoking one. It is about compliments and acknowledgement.

I often hear or see written very supportive comments about the challenge it is raising Noah. Things like "you are amazing, I could never do that ," or "I don't know how you do it."

I appreciate the support and acknowledgement. I'm no martyr; I have no interest in "suffering" in silence. I wouldn't be blogging if I didn't gain something from the support my readers give me. I wouldn't share our personal stories at work or with people I meet, if I was trying to hide our life.

So yes, know those words mean a lot to me. Being acknowledged for doing our best to get through a really tough time helps. It really does! So please don't stop!

But, and I know you were all waiting for it.

But, I don't believe for one minute when you say you could never do what I do that it is true.

Nope, that's bullshit. Because if it was you, and your child, you would do everything to help them. You would just do it. Not because you are special, but because that is what a parent does.

When my child is hurt I do everything possible to heal them. And I know you would too!

I'm nothing special. I'm just a woman that fell in love with a man and dreamed of the family we would have some day. Creating that family didn't exactly follow traditional paths, and it resulted in trials we never expected. We never expected to use our life savings on one child, and still be paying off the second one (only 11 more years).

We never expected to be consulting with specialists, seeing psychiatrists and therapists, and having our son ride the special ed bus to school.

But here we are, and we move forward day by day, good day or bad day.

I'm nothing special. Some days I fake it. Some days I think maybe I didn't suck to bad at this parenting gig. And some days I think I failed miserably. But, I get up and start again the next day.

I'm nothing special. I cry, some days a lot. I get mad. I think "poor me, why do I have to live this." I get frustrated: with the system, with the school, with the child. And then I stop and breathe, and I remember him telling me that I was the best mom ever yesterday, and I feel a little better.

I'm nothing special. I'm just a mom putting one foot in front of the other to try and give my children the best life possible.

I'm nothing special. I'm just a mom.

And If it is you, and oh I hope it is never you, you won't be special either. You'll just be a mom. But that in itself tells me you'll do it. You will do what you thought you never could. You will do it even if you are hanging on by a thread. You will do it because that is what a mom does for her child.

Yesterday I wrote about Noah slipping into mania and that we restarted his mood stabilizers. 

What I haven't written about is why he wasn't on them.

You may recall we are working with a new psychiatrist (TNP) who came very well recommended. 

She spent the summer getting to know Noah. She has also been trying to get Noah off some of his medications. It didn't go very well, and at the point when the tic surfaced we were concerned it was a withdrawal reaction. That and the slide back into some of his more negative behaviors had us agreeing that we needed to stop and let him stabilize again.

Then TNP suggested we look into a research trial at the National Institutes of Health, which would allow Noah to be in an inpatient facility and be taken off all of his medications so she could see what Noah was like unmedicated, since it had been several years since he wasn't on anything.

There was a trial that seemed like it would fit Noah, and would result in his being taken off all meds, intensive imaging and computer studies being done, and then restabilized on meds that are part of the study.

We started to seriously consider it as TNP was very persuasive with her opinion that Noah needed inpatient treatment before he was going to be able to get stabilized. Since it is almost impossible to get a child like Noah into a truly good facility for the time he would need at a place we could afford, the NIH seemed perfect. 

One on one nursing to child ratio. Only 5 kids on the unit. Personal tutor so he wouldn't miss school. Music therapy, art therapy, sports every day.

The big sticking point though was that it is in Bethesda, and they would only pay for us to visit every other weekend. There was no way I was going to send Noah off like that and not be there to see him every day. The plan was that I would find a way to stay there while he was inpatient. I could work remotely during the day, and spend the afternoon/evening with Noah. 

That was the only way I could imagine doing it. TNP didn't think that was a good idea. She felt I should be home with Kiel and visiting Noah every other weekend would be fine. She felt RIch and I needed the respite and time to just parent Kiel and give him some normalcy. 

I didn't necessarily disagree with TNP, but I still couldn't imagine just leaving my 8 yo child in a hospital by himself.

So, after several phone calls with various people in the department, and then contact with TNP, the head psychiatrist there called to speak with us.

After reviewing all the information he told me that Noah would not be a good match for the study; not that he didn't fit the study based on his symptoms, but because it is a cohort study so the healthy cohort would need to fit his non-mood disorder disorders. And that, would be near to impossible. So essentially, Noah is too fucked up for the NIH. 

Honestly, it was a relief when they told me. I was upset too of course, but I was almost convinced this was what he needed. I was relieved because now I didn't have to make what was feeling like the most difficult decision I had ever faced. 

In talking with the psychiatrist at NIH I asked him what he might do with Noah's case, knowing that we want to get him off meds, or at least minimize as much as possible. He recommended that we stop the lithium. He was part of a study that compared lithium to placebo and kids like Noah, and it showed absolutely no difference between the two.

So, based on that TNP and I decided to try and take Noah off his lithium. He took a half dose for two weeks and did fine. Then we stopped it completely. Within days I could see him escalating. His behavior at school was worse. His behavior at home was worse. He was moving and talking faster. He was having more melt downs, and being more aggresive towards Kiel.

At one week post stopping it completely TNP wasn't convinced that was the reason his behaviors were changing. She said it could be coincidental. At week two when she saw him in his office and saw the mania, she agreed that he needed to restart the lithium and that this confirms in her mind that Noah does indeed have a mood disorder.

He restarted the lithium the night before he had the manic episode at school last week.

My World: when SEPTA takes you home to mania

Last week I was working with a client in Philly. I got up early and caught the train to the city. For some reason it reminded me of this book.

specifically this page:

Except, I'm definitely not Daddy's kitty.*

But still, it makes me feel all grown up and shit, like I'm play acting. Which is kind of crazy considering I have very grownup responsibilities and I'm not play acting with those.

So yes, I was in the city all week working with a client in Chinatown. And if you know me you know that meant I had some good lunches while I was there! We had Japanese one day, Burmese one day, and Malaysian one day. Yumm!!

The whole week working there was great, if tiring. I enjoyed the people working on the project for us and we really clicked. The project itself was super interesting and I learned a lot.

The city part of the week was a nice balance to the home part of the week where Noah was rapidly spiraling into mania.

Unfortunately, the two met up when I received a call from the school nurse on Wednesday while I was waiting in the train station to catch the train home.

The call was to tell me that Noah was racing: body, mind and mouth. The teachers were concerned so they brought him to the nurse to be checked out. By then he was speaking nonsense to them. Real words, but they made no sense in the context of the conversation.

I wasn't able to hear well since I was underground, and I knew my train would be there any second. All I knew was Noah was decompensating and that it was freaking the school out. And I was an hour train ride and then another 15 minute car ride away from Noah. 

Fortunately, I was able to get a hold of Noah's behavior specialist who immediately headed over to the school. While I was on the train I was able to get a hold of the psychiatrist and make sure we were on the same page if I got to the school and he was truly psychotic. Her response was along the lines of "you'll know if he needs to go to the hospital. If he isn't making sense that is not good." 

The rest of the train ride, besides finding myself unconsciously pushing on the seat in front of me like I could make the train move faster, was spent running through all the possible scenarios depending on what I found when I got to Noah. 

I arrived at his school about 15 minutes before the end of the day. He was still manic, but he was making sense. He couldn't stop his body from moving, and couldn't stop talking, but he wasn't as bad as he had been. He did not appear to have crossed that line into psychosis, thankfully.

I took him home and managed to get him to go to karate for a class. The instructors worked him hard, but even trying to tire him out he was still racing. But, he was slightly more regulated.

He's back on his mood stabilizer now, and doing better.

*not really sure what that even means.

A book club inspired post - Brotherly Love

I give my parents a lot of credit for teaching me how to be a good person when I was growing up. I remember lots of conversations with my mom about making the right decision and doing the right thing. It was from my mother that I learned to give to charity. She helped me tape my quarters and dimes to a card to send to Easter seals. She took me with her to donate blood. She told me that I could be anything I wanted to be.

She taught me how to set a proper table, how to sew a straight seam, and how to act like a lady. Obviously there are some lessons I learned better than others. 

She also taught me the art of criticism.

I learned some things from my dad too. Like how to have an opinion, how to walk away from a fight, and how to swear. I learned the art of snark and sarcasm from him as well. Again, some I excelled at, others not so much.

But one thing that I've realized over the last several years is that I didn't learn about family from them. I mean, I learned what family is, and who my family is, but I don't recall ever feeling that there was any importance to family, especially outside our little foursome.

We lived quite close to my one uncle and his family, as we did my mothers parents, and my great grandmother. All of us in different houses on our farm.

I was close to my grandmother and my great grandmother. My cousin was my best friend through most of our school days. But the rest of the family only got together on Thanksgiving and Christmas for the most part. And that was on my mothers side.

On my fathers side I saw my aunt and uncle and their family every few years. My grandfather (gramps) died when I was 8,and I only saw him a few times before that since he lived in Texas. My grandmother (granny) I saw a few more times growing up, but after gramps died she moved to California to be with her sister. She died when I was in college. I was never close with her. It never seemed important enough for her to come visit us, or us to visit her.

Others may see it differently, but the lesson I took out of those years on family, is that if you have the love of your life for a spouse, nothing else really matters. My mom did not care for her own brothers even as adults. I believe she is closer with one now, but the other is still in her mind her "unbrother." Her own mother drove her nuts. She was a good daughter to her, but it appeared out of duty, not because she wanted to.

With my dad and his mom I recall very few phone calls. Holiday calls to his brother and one sister (the second sister was written off as a loser years earlier).

There was love there, I don't doubt that, but I also know that if my aunts had not been involved there would have been even less contact.

So what I'm getting at here, is that I never learned the lesson that family is everything. That you can love and fight and maybe even hate them for a while, but they will always be your family.

What I did learn is that if you disappoint your family you will be cut off from them. It was done to me when I was in college and I was told that rather than a daughter, they would consider me a family friend. That smoothed over, but you know what has gone on the last few years.And on both sides of my parents one of their siblings has been disowned.

If you've read my blog you know that there is a rift between me and my parents, and that because of that my brother is also not speaking to me. Well, to be fair, he never really spoke to me, but his wife did, and now she isn't, and I really miss her.

I don't like it this way at all. If I could figure out a way to fix it I would. To fix it though both sides have to want to, and the other side doesn't seem to want to.

And all of that is the preamble leading up to the guts of my blog post today, which is about brotherly love. I wrote a little bit about that in a previous post.

So like my parents did with me I'm trying to teach my children how to be good people. How to be good citizens.

I am also trying to teach them the importance of brotherhood. And about fealty to our family.

Just tonight I was curled up with Kiel as he was slowly drifting towards sleep and he brought up something Noah did that hurt him. Kiel said he didn't like it, and that it hurt. Then he told me Noah is bad. And a baby. So we had a good talk (as good as it can be with an almost 4 year old anyway) about how important being brothers is, and that even if you are mad at Noah you still love him. And that some day you might have to help him make better decisions.

I've had that conversation with Noah multiple times. Yes Kiel can be a pain in the ass. Yes, he ruins your Legos. Yes, he's noisy. But, he loves you and looks up to you, and he is, and always will be, your brother and your biggest fan.

I hope that if I say it enough it will sink in and become so engrained in their brains that they will never question it. Brothers are for life! Mom and Dad won't always be here, but they will.

It's simplistic in its message now. As they grow I will help them see its more complicated parts. And then I will hope that I have laid a strong enough foundation for them that they never lose hold of each other.

And if they don't, I'm going to kick their ass.

Todays post was inspired by our current From Left to Write Book Club selection - Carry Yourself Back to Me. And let me just say I loved the book. Once I started it I couldn't put it down. I totally blame this book for me not cleaning my house last weekend. Extra props to Deborah as it is her first novel!


Deborah Reed's debut novel Carry Yourself Back to Me follows heartbroken singer-songwriter Annie Walsh as she digs into the past to
exonerate her brother from murder. As a member of From Left to Write book club, I received a copy of this book for review. You can read other members posts
inspired by Carry Yourself Back to Me on book club day, October 4 at From Left  to Write