Traveling

My son is a terrific traveler. Honestly he hasn’t had a choice. He went to Russia 2 times before he was 3. That’s a really long plane ride (15 hours without layovers) and staying a month in a place where you don’t understand the language as much as you SHOULD when you have a Russian father (AHEM) and don’t know the family that insists on taking care of you.That’s 1 more trip to Russia than I have taken. My husband is trying to convince me he needs to go all next summer without us. I don’t think I can do that….

He also traveled a lot as a baby due to my illness. Until he was 3 or so he went to my parent’s home a lot, 500 miles away, both with and without his parents. He stayed at his aunt’s and uncle’s house at least 2 times while I was sick, also 500 miles away – without his parents. And his mom likes to go see her family a lot. So we try to make at least 5 trips to family a year. Usually him and mom.

He LOVES hotels. He is infatuated with them. In fact, he has 2 favorite hotels. 

Due to my health traveling has become difficult on me. Long drives wear me out, trigger migraines, make my shoulder and neck act up more… Usually we have to stop at a hotel either on the way TO family, or on the way home. We now have a favorite hotel on the way home from his grandparent’s house. It has a koi pond where they let you feed the koi. It has a pool that he can actually play in alone – a very long shallow end. The icing on the cake – the gamecube in the room. His second favorite hotel is in Keystone. We went up there for a weekend this winter, to spend time at the ski resort. They have certain “kid centered” days there and we played in a giant snow fort, went snow tubing down GIANT hills, rode a gondola, did arts and crafts, had face painting done, and watched a science show. Next year we will take skiing lessons. And by “we”, I mean the two russian guys. No skiing for this gal. I will be enjoying a day at the spa. Anywho – we had a reservation at a certain lodge and got upgraded to their sister lodge because they ran out of room. It was lovely – truly lovely – and we didn’t even go to the pool or anything. He still talks fondly of that “special hotel”. LOL

Today he stopped in the middle of his brick building and said, “mom, I really want to go to a hotel again. I said, “honey, I am sure we will be really soon. We are planning on a little vacation this summer, and I’m sure we will need to stay somewhere then.” He replies, “Thanks mom, you are the best mom ever!”

My husband on the other hand gets a little verklempt about the whole thing. “How can a 5 year old have a favorite hotel? I didn’t even know what a hotel was when I was 5.” I say, “Well, honey – you wanted a different life for your child, and sometimes that includes things you don’t necessarily like better. It’s the mix you have to look at. Over all he has what he needs, he doesn’t want for anything, he isn’t treated poorly for the color of his skin or his last name. He can get a decent education for very little money. He can go to college if he wants or he can get a good job. These are all things that are better. So he likes hotels. Who doesn’t? Maybe he will travel the world when he’s older.”  The hubbs always just kind of grunts at this. But I know he likes that he can give his son a different life. As long as he stops by Russia on his way to traveling the world it will all work out in the end.

GASP Special Ed!!!!

Special education.

When your child is born, MOST people don’t expect any serious complications or any disabilities.

I say most because some people get testing done while they are pregnant that tells them their child will be born with a disability and are able to prepare for their child’s arrival. Which I think is awesome.

But MOST of us expect a happy, healthy baby with 10 fingers and 10 toes.

According to the March of Dimes about 8 million children are born each year (in the world) with “birth defects.” These are the more severe disabilities that are sometimes genetic, sometimes because of prematurity or poor diet, sometimes just happen. These are the ones you can see right away.

Then there are people who have a happy healthy child. Who see small differences in them, but the children make all the “milestones” – sometimes even early. Who’s child is smart and funny and talented and energetic. Who’s child sometimes have a hard time with certain things, but who figure the child is just special or different in their own way. Then the child goes to preschool and it is suggested they be tested for special education.

My son is one of those children.

Turns out he has a few “developmental disabilities”. He has “sensory processing disorder”. This means that the way his senses send signals to his brain sometimes get mixed up. Things are too loud, too bright, too rough, too touchy, too smelly, too …. too much. He has a slight speech impediment. Tongue thrust and struggles with a few sounds. My son also processes language differently. We haven’t figured out exactly what is going on there yet. He aces all the language tests. His vocabulary is at grade 3 even though he is only in preschool. He just doesn’t always understand what you are saying. Even if you say it in toddler terms. Even if you break it down a word at a time. Even if you say it differently several ways. It just doesn’t “compute”. These have both led to some behavior problems in the classroom we rarely saw at home or with friends. Which is why the doctors didn’t catch it, even though we were in all the time. He also has low muscle tone and eating issues – which stem from the sensory processing – which we are working on with therapies and activities like Karate and swimming.

He is extremely intelligent – they don’t do IQ tests at this age, but his knowledge base and vocabulary, etc. all test at grades much higher than he is age wise.

So, what happens when you are hit upside the head with special ed testing – thinking all your child’s life he is intelligent, funny, bright, and basically all around awesome?

Well – you cry. You look stuff up online. You try to explain to your husband about what they are saying.

That one has been hard. He doesn’t see anything wrong with a fist fight on the playground – that’s what they did in Russia. He doesn’t understand why they think he needs special help. “Do they want him to be a robot?” he asks over and over. Why do they think he is such a problem he wonders? To him it’s just a boy thing, maybe he is a little bit over energetic – a little pushy or opinionated. Nothing bad. He only sees the best parts of our son. Which I am thankful for. He can be a mirror of the best parts, and I can help him work on the things we need to work on.

I dig through everything I can find about our new “problems” and what will help. I make bins full of uncooked beans and rice and fill them with mini dinos to dig through and find. I order sensory diet paraphernalia. I get more putty and some stuff to turn baths to goo and I get wiggly jiggly toys and a big hopper ball and make things like “cloud dough” and make my son play in the sink before school and make him hop 100 times on the hopper and squish him between couch cushions, making a “Kiddo sandwich” and find “hippotherapy” or horse therapy (which HAS helped) and buy a twizzler which he can spin on for hours and …..

And you do everything you can to help your son.

You do find some answers. For example, why he never slept well, and what might help with that.

You find out “special ed” really isn’t all that bad… not yet anyway. He is still in the regular classroom. Even when his speech pathologist works with him she does games and things like that with other class members so he isn’t singled out. He gets to ride the bus (only to school, not home, because I want to see how his day was) to help foster independence. Which, at age 4/5 is AWESOME!!! He gets some help from the OT, although not nearly enough.

You learn from other special ed parents (some with really severe physical and mental disabilities) that you will have to fight the system. That school therapy most likely won’t be enough (which you already see) and that you will have to do private therapies, and likely pay for most of it, if you want you child to really get what they NEED. The public schools are set up to help your child “function” through the day at school. They aren’t set up to help your child THRIVE. Which is what all parents want.

You learn that “special ed” isn’t so special. It isn’t something to be ashamed of, or something to hide from. I don’t mind telling others about our experiences. I hope I can help some people out there. If we had started sensory diet therapy at a younger age it might have helped him earlier in school.

You learn that you are lucky. Your son will grow up, live on his own, take care of himself, he will adapt as he grows up to these things – and likely by the time he hits middle school will just blend in. We have a family at our horse therapy who have 2 severely disabled girls. The fact that they walk on their own and are able to eat lunch and go to recess and PE with their “regular ed” classrooms is huge. They will never live on their own and will need therapies all their lives and nursing help as they get older. We are lucky. This is doable. (although to that mom, her situation is doable too – it’s all relative.)

So, when someone tells you that their child is in special ed, don’t say you are sorry or that it must be hard, or stumble over your words. Ask if they want to tell you why they are in special ed. If they want to talk about it, talk. No one’s kid is perfect – we all have struggles. I have found acting like nothing is “different” or “wrong” is worse.

And try to support the families in special ed in your kid’s school. I’ll bet those kids have just as much to offer as your kid does. Maybe more.

Zoo Field Trip AKA life moves fast

The boy and I had a field trip to the zoo today.

Understand, this is not the type of field trip where all the kids get on a bus with like 4 mommies and daddies and go to the zoo. We are part of a public preschool and the only kids who can ride the bus are in special ed. And they have to have a special waiver signed. Now my son DOES ride the bus to school. And they have 5 point harnesses in every single seat – it’s like a fold down car seat. So I don’t really understand the rule against field trips. But whatev. I get to get out of the house a while. My kid gets to go to the zoo with some friends. Should be a win/win.

So we get there and we are all waiting out front for the teachers and staff and other kids. We were told to be there at 9:30 and we would go in at 10. I should have gotten there at like 9:55 because I have a membership and don’t need to wait for a wrist band anyway. But I’m kind of a sucker for the rules, so there we stood in the sun waiting for the zoo staff to bring out the wrist bands.

I see the girl my boy wants to walk with and her dad headed for the membership window and since I had told the boy we could hang out with her, we run to catch up. Her dad was like “I’m not standing in the sun anymore, we are just going in.” So we did. (I should have caught on to his crankiness at this time)

The plan is this: enter at 10, walk around for 2 hrs, meet up at the girrafe house “park” area for a picnic lunch. WELL, I didn’t bring a picnic, because my shoulders/neck has been killing me for months and there is no way I’m carrying anything I don’t have to. SO, I already know we are going to have to stop at the cafe’ to get fries and drinks before meeting the other kids. I’ve already screwed myself.

My kid convinces his friend that we must go to the penguins first. Which are way in the back right area of the zoo. Opposite the giraffes. Her dad and I try to point out the kangaroos and cheetas and hippo and rhino on the way, but they are set on seeing the penguin. (this is my life, by the way, my kid gets something stuck in his head and just can’t get it out). After the penguins the kids want to ride the carousel. We ARE right there. But for some reason the dad says we have to wait for later…..  So we look at some bald eagles and some flamingos and some monkeys with big red butts, and some gorrillas, and the kids are holding their noses because the monkeys stink. And then his kid is crying about the carousel. And he gives in.

SIGH.

So we walk all the way BACK to the carousel (after stopping at the potty where my son asks why he is going in the girls and she is going in the boys and gets all verklempt about THAT).

The carousel ride of course lasts like 2 minutes and then the girl is afraid to jump off. She thinks it’s still moving because she is dizzy. And instead of stopping to help the kid, he just walks away until she starts whining and wailing and he has to go back anyway. He wanted her to suck it up, I guess.

THEN he decides the kid is too hungry to wait for lunch (which, if we just went and got food, and went to the giraffe park, it would have been time for the picnic anyway). Of course, she has a stroller (which we haven’t used in like 3 years) and my son starts whining that HE is hot and tired and that she won’t talk to him and after what seems like an eternity (but is really only a few minutes) we get to the cafe’.

We get our meals and I decide there is no way I am carrying all this crap and dragging a whiny kid to the giraffes, and ask if he just wants to eat there in the air conditioning. And thankfully he says yes.

I don’t want to make it sound like we didn’t have fun. We did. The day was mostly pleasant.

We missed the picnic. My son and I left after lunch because we were tired. We agreed to exchange phone #s before the summer, so the kids can play – they are going to the same kindergarten next year. And he told his kid that they still had a lot of animals to see, which she started whining about because she was tired.

And all the way home I think about how differently I parent than most parents I meet. I admit, I have my days where I catch myself making my son do something “just because I said”, or “because that’s how we do it”. But for the most part I have learned to kind of go with the flow.

If we go to the zoo alone (which we do all the time – we have a membership), my son gets a map and I follow where he wants to go. If all he wants to do one day is beeline to the penguins, ride the train and carousel, and go to the sandbox, that’s ok with me. I am not at the zoo to see the animals I want to see, I am at the zoo to spend a day outside enjoying my son.

(OK, once I DID make him go see the new baby orangutan with me even though he didn’t want to – but the big apes are my favorite, and they only have baby big apes once in a great while!!!! Sue me.)

I thought about how when we go to the store I see moms screaming and dragging and kicking at their kids to go the right way. Honestly, I’ve been there. Sometimes a kid doesn’t want to shop. But most of the time I try to make it interesting. I have him put the food in the basket, have him help me pick out the produce, have him help me “choose” things, or at least “find” what we need. Talk about what a good team we make. It makes it so much more enjoyable.

Why should parenting have to be so “hard”? Yes, there have to be rules. Our rule at the zoo is “you stay by mom”. If I say “what’s the zoo rule?” which I did today, my son says “stay by mom”. If he doesn’t stay by mom, we leave. That’s our one rule.

Why do we have to make a big deal out of when to ride a ride or when to see an animal, or even try to see every single animal there? Yes, I told him no when he asked for cotton candy. That stuff is dangerous. Mostly because it ramps him up so high he can’t come down for hours and I might go crazy and leave him with a band of gypsies. But we got an ice cream after lunch and we had a great day.

Maybe being sick has taught me to pick my battles and make my moments count more. Maybe I just have had to learn that you can’t control every aspect of every day with a kid. Hell, you can’t control most of them. I control even less than most parents because of my physical limitations.

Maybe I have just found that part of me that parents from the heart most of the time.

We have bedtimes, we have routines. We have rules, we pick up our toys. We also make messes and paint and lay in the grass and look at clouds. Sometimes we even get muddy and dirty, although my kid hates it more than I. (If I am honest, I need to be more like my brother, who has what we call “free range children” – they play with bricks and sticks and they get dirty as heck every single day – and they spend all summer long in the back yard riding a zip line and eating popsicles. And they are happy.)

The zoo (like life) should be a journey. Not a check list.

“Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.” — Ferris Bueller

I don’t want to miss the fun and good times before my son is grown up and gone.

Resort Style Living

The hubbs went to play volleyball at a friend’s “apartment complex” the other day. It’s one of those “resort style living” places. Mostly condos and apartments that are ok, but it has a bunch of stuff on the property that pulls you in. He took the boy too.

The following are a series of texts we exchanged:

Hubbs: We should move here.

Me: Where?

Hubbs: Breakers.

Me: 2 bedrooms, costs more, more Russians, crappy schools. What’s the upside?

Hubbs: The bar, the lake, the playground, the bar

Me: OH, well, if it has a bar we can sleep on the floor, forget our son’s education, and not eat

Hubbs: It’s really nice here

Me: and there’s a bunch of russian girls running around in bikini’s?

Hubbs: no. It’s cold out.

SIGH.

Why don’t you just loose weight?

I am overweight. In fact, I’m probably the heaviest I’ve ever been.

WOW that’s hard to say.

I want to loose weight. I want to feel better and be healthier. I do. I want to be more active and I want to be able/be comfortable to do things I can’t do right now.

I want you to know that if you have a friend who is over weight, telling them to just loose weight is not helpful.

At all.

I have many many health problems that limit my activity. I also have a thyroid condition. This means my body doesn’t metabolize properly. I also have fat genes. I also have a million other excuses.

The point is, it is not as easy as “just loose weight”. When I loose weight I have to govern every single mouth full of food. What type it is, how big it is, calories, carbs, the whole 9 yards. I have to completely change the way I eat. And I have to exercise. I have to exercise a lot more than I used to. They say thyroid patients need 1 hour of exercise a day. You know what? Some days I am in too much pain to do one hour of exercise a day. Or half an hour. I do what I can when I can. I push myself.

Also, saying “but I thought cancer makes you really skinny” doesn’t help. FYI.

Let me give you some tips as to what to do if you have a friend who wants to loose weight and you’d like to help.

1. Don’t tell her about how your mother in law lost weight eating nothing but hard boiled eggs. Very few people can make changes that drastic and if they do, they often gain the weight back pretty quickly.

2. Don’t say “well, if you would just exercise more…”. Chances are, she already feels pretty shitty about not being able to exercise as much as everyone else says she should.

3. Don’t say “I know this great juicer.”  This should not need explanation.

4. Don’t say “have you tried quinoa?” Yes. Yes I have. It tastes like summer old flip flops and it feels worse. If I ate quinoa do you think I would look like this?

5. DO offer to go on walks or bike rides or whatever. Sometimes exercising with someone else is nice. And actually helpful.

6. Don’t ask her to go to dinner or lunch with you. Part of her problem is that she is already social about food. If this is something you already do regularly, suggest a new place that is salad/soup oriented, or maybe a vegan place because it will all taste too bad to actually eat.

7. Don’t complain about how you can’t gain weight. You know what? I’ll trade you any day. Seriously.

8. Don’t complain that she’s cranky when she’s on a diet. REALLY? I’m cranky? Thanks – that helps me a lot. Screw off.

I – ron – ing

My hubbs wakes me up this morning as he’s getting ready.

Hubbs: Do I have any pants?

Me: I don’t know – do you?

Hubbs: Did you I-RON my pants for me?

Me: It’s iron. And no I did not. Today was supposed to be your day off. I ironed the shirts on Sunday and was going to do the pants today. I can only do so much I-ron-ing before my chest kills me and you know it.

Hubbs: What pants am I supposed to wear?

Me: Maybe you could I-Ron them yourself.

Son (who is trying to snuggle through a bit more sleep with me): Yeah DAD. I-ron your own pants.

Hubbs: (giving me an evil grin) Son, are you going to i-ron your own pants when you grow up?

Me: DON’T even try to go there.

Son: Yes. I will I-ron my own pants. Unless my chest hurts like mamas. Then I won’t i-ron.

Hubbs: What if your wife wants to I-ron your pants for you?

Me: Don’t even try it. You will not be indoctrinating my son into your 1950’s sexist Russian views. He can iron his own pants when he grows up just like his grandpa (my dad) does. I am teaching him to do laundry and he loves to mop and cook too. You are a grown man. If you want your pants i-roned you know where the i-ron is.

Son: Maybe my life can i-ron my pants if she wants to.

Me: At least he knows his wife will be his life. Get out.

I believe he had his mother i-ron his pants for him before he left by the way.

“Did they have to take out your HEART?!?!?!?!?”

I have a giant T shaped scar from the bottom of my neck (the top of the T) down between my breasts. And it’s red. And it’s swollen and wide. (I don’t scar well – stupid Keloids) It also goes up behind one ear, but that part has healed more nicely.

One day when it was still fresh and even scarrier looking – like Frankenstein – a little girl in an “Old Navy” store asked what happened to me. I told her I got really really sick and had to have surgery and the doctor fixed me up. She stared at me in horror for a long long time and then said slowly “Did they have to take out your HEART!?!?!?!” Which embarrassed her mom so much I could see her literally trying to sink into the floor. I said “Nope. I still have my heart – and I’m all better now.” And gave her my winning-est smile.

Then I went to my car and cried.

The 5th anniversary of my chest surgery came and went this month. I honestly avoided thinking about it at least consciously. Apparently my body didn’t. I have been sick most of the month – pain, migraines, sleeplessness, restlessness, mood issues.

As I sit here writing my mind wants to run. Run away from the pain. Run away from the memories. This is how I know I must at least attempt to put something into words. Get it out of my body.

I found out I had thyroid cancer in December 2006. Just after my son was born. He was about a week old when they told me “we think it’s cancer”, and scheduled me for biopsies. I didn’t need a biopsy, though – I knew what it was. I’d been trying to tell the doctors something was wrong for at least 3 years, and I had a ping pong sized lymph node that wouldn’t go away. And the ultrasound looked scary as all get out.

The first surgery was scheduled on my son’s one month birthday. As I was being put under I thought of him – specifically the way he pursed his lips when he yawned, and his big gorgeous eyes. And his laugh. He laughed the first day he was on this earth. I got through that surgery ok, was off my thyroid meds being prepared to have my “special” radiation – a pill we swallow. I ended up having to take my baby to my parent’s house – leaving my husband to be alone worrying about us, away from his new son. The doctor I had then kept putting off my radiation. I kept getting sicker. I couldn’t lift my baby. I couldn’t help take care of him. My mom or sister in law or whomever was there helping would put him on my lap, or lay him on the couch or bed next to me and I would love him. Mostly they did the feedings, changings, bathings, getting up at nights… The precious newborn things. I desperately tried to spend moments with my son between sleeping and hurting and being sick. I just kept my eye on the prize. Get that pill in me to kill the last cells of cancer, get back home, and get on with our lives. When the doctor finally decided I was ready for my radiation we came back home. I think we were gone for over 2 months. My mom and husband took care of the baby. I tried to shower, put on clothes, lift my arms. I couldn’t even put my hair in a pony tail.

By some crazy act of fate the doctor I would fire immediately following my second surgery ordered a test not normally used before RAI (radiation iodine). Hey, every once in a while even a moron gets one right. He was told by the nuc med department that they had started trying to use PET/CT scans the day before the radiation to make sure everything looked ok. Not only was this helping to treat cases better, but also giving a baseline PET scan to compare later (the PET scan can sometimes pick up more if you are off your meds in these cases.)

My RAI scheduled for the next day, my mom drug me to the PET scan. Looking back now, I should have known something was wrong. The tech was a young man – only in his early 20’s, and he squeezed my hand and told me good luck as I left.

The nuclear medicine department called me to cancel the radiation iodine. Before my doctor got around to calling me.

I panicked, calling my doctor. He told me there were more tumors. I needed to see a cardiothoracic surgeon right away. My favorite doctor in the whole world got me in to see one of the best in the state. Right away.

As we stared at the tumors between my lungs and heart on the PET/CT images I went numb. I swear to you I have no idea what happened after that. I know he told me we had to go in through the sternum – no chance of going down behind the collar bone or even from the back. The tumors were too close to major arteries and nerves. He told me I would go onto my thyroid medicine – to have surgery in this state (being extremely hypothyroid to prepare for the radiation) would kill me.

I cried in the car. I sat in the back by my son. Luckily my mom is made of metal and got us home safely. I’m sure she cried there though. I held my son swearing I wouldn’t orphan him at such a young age. I screamed inside myself at the world. I had waited so long to have this – a family, happiness, my own little corner of the universe, some sanity. What kind of world was this to make me go through all this crap now? After I had picked up the pieces of a once crazy life and made my own way and found some happiness? Where was the fairness, the justice, the kindness, the mercy?

Guess what? Sometimes there isn’t any.

I ended up going home with my mom again. I couldn’t care for my son and get the rest I needed, and even though my parents both worked, we had cousins, my grandma, aunts, and church friends who could relieve me parts of the day. It helped a lot. But again, I was afraid, lost, and away from my husband. I slept little, I ate what people made me, I sat and watched tv. I couldn’t read because my eyes had swollen and collected extra fluid. I tried to play on the floor or couch with my son. I went to Walmart and used one of those little ride on carts to find little toys and some new spring clothes for the baby. I hadn’t even been able to do any of the normal “buying clothes” mom stuff since before I had been on bedrest for the pregnancy.

On April 12, 2007 I had my second thyroid cancer surgery.

I’m not gonna lie. I was scared out of my gourd. But I tried to be all matter of fact and “it’s gotta be done” about it. The night before the surgery I’m sure my mother, father and husband wanted to kill me. I tried. I really did. You can’t imagine all the deep breathing and meditating I did. I let my dad have a man from their church come over to pray over me. (this was for their benefit – my parents and brothers’ – I knew it would help them feel better about the surgery) My husband pulled out some Russian prayer card I’d never seen. We aren’t religious. We don’t pray. But in situations like this people revert to what comforts them. I didn’t sleep that night. I was so exhausted I could barely walk. I had just gotten my TSH up to a “livable” level. It wasn’t perfect and no where close to what we are normally kept at. But I could have surgery.

Every other surgery I have ever had they gave me “versed” before they wheeled me down the hall. They call it the happy juice. It helps so you don’t have to see the operating room – well you see it, but you don’t remember it later, and you are so relaxed it’s no big deal. This surgeon believed in “the least necessary” route. Which is good. In theory. He put a Picc Line in my chest so I didn’t have to mess with IV’s, since I have a tendency to blow them out. He didn’t let them give me a catheter to try to avoid bladder infection. So, no Versed. They let my husband stay with me until they wheeled me down that long long hallway. He held my hand and in his quiet way comforted me. Then I am told he went out into the waiting room and curled up on a couch pretending to sleep. My son was almost 5 months by now. We had a family friend watch him for the day so he wasn’t just sitting around the hospital. (first – the germs – eww. Second – my family needed to breathe.)

I was scared to death of that hallway. The operating room was cold and big and lonely and bright. And cold. The doctor held my hand and talked gently to me as they put me to sleep. He told me he’d talk to me soon, not to worry, I’d see my son in a couple hours. I thought about my son’s little pursed lip yawns.

I woke up in the Intensive Care Unit in so much pain I couldn’t breathe. I passed back out.

You know when they ask you “on a scale of 1-10, 10 being the worst pain you’ve ever had, how bad is your pain”? Well, I have had nurses compare 10 to child birth, kidney stones, one fool said “imagine if your arm was ripped off in an accident”… like someone can really imagine that. This pain was not on any scale. I think the pain meds they gave me weren’t strong enough – we had to move up to the next few “levels” of meds, and combine them with other things. But I also didn’t expect the pain. Had I been expecting it I might have done better. My doctor told me several weeks later that if he told people about the pain, they’d rather die from a heart condition, and he wouldn’t have a chance to heal them. I don’t mean to sound like he didn’t talk to me about it. He said “it’s gonna hurt. bad.” But there is no way to prepare for this or even imagine it, I don’t think.

They cut my sternum open straight down the middle  from the notch in the collar bones to just below the 4th rib. They pulled the ribs open. They took out 9 tumors which, it turns out, were wrapped around the nerve bundle, major arteries, and my trachea. It was “a mess” in there. Then they closed me up, wired my sternum shut, and sewed it back together. Writing this hurts. Physically.

I was unable to ride in a car without weeping for weeks. Breathing hurt, coughing made me pass out a few times. I ended up needing a phentanyl patch to just get through the day for almost a month and a half. I couldn’t lay down for 2 weeks. We used every cushion including couch cushions in the house to get me a few precious hours of sleep by propping me up into a mostly sitting position that didn’t strain my neck and back.

I don’t even remember a lot about that time, except the pain. I remember my mom taking me across town to see the surgeon for follow ups. I was in so much pain I was crying and we saw a person pushing a stroller. With a dog in it. An expensive jog stroller. I started laughing and it hurt so bad I vomited. My doctor showed me how to pull the suture out that were getting infected. My body “over heals” – and I “spit out” suture. It’s actually called a suture abscess. It’s an infection and the suture has to be pulled out. He took a few out while we were there and showed me how to do any more that happened. Sent me home with a little surgical kit with a scissors and tweezers. I felt pretty cool. I ended up pulling out and clipping 4 more at home over the next week. I told him if I knew how much pain I was going to be in I wouldn’t have had the surgery. He told me “I know. That’s why we let you find out for yourself.”

(ps, that nurse that said “imagine if your arm was ripped off in an accident…” This was my response to him: “Well, I can’t really imagine that. But why don’t YOU imagine someone splitting open your chest, digging around in it, wiring it back up, and waking you up with your pain meds not working. That’s MY 10. This pain is a 6.”)

I couldn’t lift my son – I couldn’t do anything but eat. My mom helped me dress and wash and get from the couch to the bed. I had my radiation iodine 4 weeks later, so she took my son to her house at that point – for 7 days I missed my baby. You can’t be around people for a week after you ingest that stuff. You can kill their thyroids if you are, especially children. My husband slept in the other bedroom, used the other bathroom, ate by himself and came into my room (4 ft away) for an hour at nights. I still wish I had “isolated” somewhere else because I still worry about the effects all that had on him and my son in the end. I was very sick for that week after radiation. I slept and watched TV and slept.

My parents brought my son home to me on the morning of my first Mother’s day. I was still sick and tired and weak and in pain, but determined to stay home with my little family. We did alright after that. Very slowly and very carefully. The house was a wreck, I was a wreck, my husband brought home dinners and did the laundry at night even though he left for work at 4 am and didn’t get home until after 9 usually. I couldn’t do anything except take care of the physical demands of my son and I. And sometimes not even I.

It has been 5 years this month.

I still hurt every single day in my chest. Some days it’s a dull ache – just the background noise of my life. Some days it is extreme stabbing pain. Nothing we have done has helped this. We tried medicines – one anti-inflamatory helped some but gave me an ulcer. PT, massage, yoga, meditation. We even went back in on my 4th cancer surgery and tried to “rewire” my sternum – it never healed properly and I begged the surgeon to just try to fix it. It took me going to see him 3 times and the doctor who was doing the neck surgery calling him to convince him to even try. I knew the surgery would hurt, but not like the first time. They didn’t need to go spreading open my ribs for hours. Just scrape the bones, and re-wire. We even put in a cool bionic piece to help close it called the Sternal Talon. http://www.klsmartinusa.com/Sternal_Talon.672.0.html I do believe that helped for a while, but it just didn’t quite do the trick, and at some point the pain started coming back more. I feel like the Talon slipped some. But it did help the pain in the initial healing period and for several months after.

I think the trauma from this surgery has been something I have suppressed. I mean, it was a serious surgery with lots of possibility of complication. I was in the most extreme pain I can ever imagine and I lived through it. I have pain every single day because of it. My life will never ever be the same. I can’t cut vegetables without causing more extreme pain. I can’t lift my son. I can’t lift a bag of potatoes. I can’t push  a grocery cart. Vacuuming is torture. Driving more than an hour can really aggravate it. Holding my son’s hand as we walk, him tugging on me or pulling against me can bring tears to my eyes. As he has gotten older and bigger, he causes pain too. He will snuggle too hard against me, or pull on me, or jump into me. For a long time he was used to being careful with mommy, and he was smaller, and now since it’s just part of his life, I think he has become a little more careless. And I hate to tell him he is hurting me. So I usually don’t.

This surgery changed my life in ways I can’t even describe.

I have tried to think of the positive aspects. I know that everything that happens in life has negatives and positives to it.

I have found strength I never knew I could have. I know that 10 years ago I couldn’t have gone through this. I have found the ability to AT TIMES live in the moment. To just be. To not be DOING anything. No one can live like this every minute, but I have found a way to do it more often than I used to. I have learned the art of accepting and even asking for help. I have learned the art of saying no to people, because I just can’t do some things some times. I have learned that limitations are ok. They are part of life and they are not good or bad. They just are.

I have learned that there is ALWAYS something worse than what you are going through right now. Always. I have met some amazing people along this journey. Truly amazing people who have touched my life for the better forever. I have learned how to show my son how to be strong. Not physically strong. He doesn’t understand that I actually am being physically strong every day when I tell him I can’t do certain things. Not yet. But he is learning that even with pain there can be life – and an enjoyment of life. Even with illness or sadness or mourning there can be quality and meaning in your day, week, month, moment. He is learning that the true strength in everyone comes not from the outside, but from the inside. He is learning that moments are important. That being healthy is important, and how to best try to keep his body healthy. He is learning good stress techniques, I hope.

I have become closer to my family and my husband. I spent time that I would have never been able to spend with my parents, and my son did too. He is very close to them because of it. I spent time with my nephews and my sister in law when she helped me. I have learned that time is fleeting and good quality time even more so, and so I try to see my brothers, my sisters in law, my nieces and nephews, my parents, my grandma, my cousins, my friends, and all the rest of the people I love as much as I can. I have learned that once it’s gone, time can’t be recovered. I have learned to enjoy those precious moments.

I have learned to take care of myself first, because if the captain goes down, the whole ship does too. If I have a migraine, or pain, if my body is telling me to slow down, I have to make myself do just that. To not slow down becomes disastrous.

This isn’t the end of the story of my cancer journey. I had 2 more surgeries, 2 more years of testing and such. And right now we are “watching” some activity that may or may not be something we need to address later on. But it was a major chapter in it, and since this month seems to have taken a toll on me I decided perhaps I needed to address it.

Thank you for listening.

If anyone runs across this post some day and it scares the crap out of them because they have thyroid cancer, please know that my case is not normal. It’s been very very far from normal. Don’t let my stories scare you.

And do your best to kick that cancer’s ass.

Slow Learner

I was always a smart child. I really was. They wanted me in the gifted and talented program, but my mom thought it was a waste of time – and honestly it was – they didn’t have much of a program. Extra worksheets and such.

But as I grew others began to realize that I was one of those people who insisted on learning things the HARD way. And by hard I mean getting smacked in the face dozens of times before I stopped walking into the same door.

It took me a very long time to realize this myself, and it is still my default drive. It is still the way I learn. I don’t know why. I’m smart, I’m sensible. I just have to do everything the hardest way possible.

Tonight I got figuratively smacked in the face. I was reminded of some old trauma. My first real trauma. Which of course reminded me of other old traumas. Which of course reminded me of all the ways I have tried to deal with trauma. None of which has been particularly effective. And many of which created more trauma.

I have been feeling stuck lately. Stuck in my life, stuck in my relationships, stuck in my health, stuck in my old habits (although, not my OLD OLD habits, thank goodness – we do have to keep some semblance of reality here – there is a child involved now).

I have had several people including a doctor tell me perhaps it’s time to address some of these old and new issues. (I mean, she has been through 5 years of hell, preceeded by a good 15 years of brokenness before that. Hello.)

I think it is time to stop slamming my face with the door.

I am going to be embarking on some difficult work. Not for myself, well, maybe a little, but mostly for my son. And my husband and his sanity.

I have been taking a lot of things out on him lately – and blaming a lot of the bad feelings in my life on circumstances surrounding our home life. But the other day when I was getting a massage for my neck pain, I realized something. All of the stress that was coming out – all of the pain – not one time did I think about those issues. I thought about my mom and her health. My cancer. My son’s struggles in school. I thought about my dad and what he needs right now. I thought about some really old stuff. NOT ONCE did I think about my husband, or my parents in law being here with us, or my mother in law cleaning out my closet. Not once. My issues run so much deeper and to realize that these little concerns are what I am focusing on because I am running from the real issues? HUGE.

So I am trying to let go of those little issues. Or at least sweep them away a bit. And I am trying to stop burying myself. In fat and in clutter and in food and in pills and in physical pain and in guilt and in “things” I don’t need, and in attention, and in drama. And in brokenness.

And I am going to do the hard work.

I hope we all come out in one piece.

 

 

(This beautiful image is not my work, but it resonated so strongly with me- I borrowed it from a woman named “Ruthie Dean” – who’s website has some beautiful work. http://ruthiedean.com/2011/09/19/strength-and-brokenness/ )

Sensory Overload

SCREAMING – my first minute of the day was my son screaming over and over from downstairs “MOM MOM MOM” at the top of his lungs and as loudly as he could. He knew I was getting dressed to come down and I’d be right there. But he was screaming.

The rest of the day went like this:

Pounding, jumping, running, stomping, YELLING YELLING YELLING, throwing, hitting, breaking, crushing, jumping jumping jumping, TALKING VERY VERY LOUDLY, running jumping crazy, throwing, breaking, YELLING YELLING YELLING, ……..

You are thinking – well, he is a boy, he should be doing these things.

No. This is excessive even for a sensory child – even for my child.

Today was too much. For MY senses.

We had some friends over – he played for 4 whole hours with another child until she was completely exhausted. We went to the park, we played outside, we did sensory work, we did a craft project, we played Wii we really did a lot. Yesterday we were outside half the day at the zoo, and did errands after. We were both exhausted.

He should have had some calm today.

At this moment he is sitting in his bath playing at my insistence – I told him if he didn’t splash loud I wasn’t letting him out, screaming 3 words over and over and over again with all the force his diaphragm can handle. Through a plastic funnel. He doesn’t want to be in there, but if he doesn’t do something with this energy I will snap.

He crushed plastic cups, he broke plastic golf clubs pounding things, he hit his friend in the eye with a pokey thing, he stomped, he built a tower out of cushions as big as my head and jumped from them.

This day was so explosive I don’t even know how to process if. I am exhausted.

Maybe he had too much sugar yesterday. He did have a lot of sugar. (not all my fault)

Maybe he just had to get this energy out.

I don’t know.

All I know is that I (and I think truly any decent parent) can understand how child abuse happens. I am not  saying I want to hurt my child. I haven’t even entertained the thought. I just think that I can understand how someone with less self control, less education, less coping skills, less parenting example, less kindness, less ability to BREATHE DEEPLY, less resources (mental, physical, emotional, etc) loose it sometimes. I can understand how after someone has accepted what feels like the last straw they can handle, and ONE MORE straw gets screamed/yelled/pounded/pushed/bit on top of it, and they have done all they can all day long to handle the situation like a kind, caring, giving parent….

I can understand how people loose that self control.

Thankful tonight for that realization. For the realization that even a good parent can get to a point where they have to throw their kid in the bath for 15 minutes to let them steam and bubble it out and to let the parent breathe it out and give them both a second to BREATHE DEEPLY.

That realization is what stands between me and the person I described above.

And a trampoline. Tomorrow my husband is buying and setting up a trampoline if it kills him. And our budget.

Having a sensory processing child is expensive.

A Day Full of Moments

Today has been a day full of moments. 

“Life is not measured by the number of breaths we take, but by the moments that take our breath away.” Unknown Author

The first moments of my day were painful and exhausting. Waking at 4:30 am I had terrible shoulder and neck pain. I spent the next 2 hours trying to stretch, heat, ice, rub, lotion, and meditate away the pain. 

You would think that this would have made for a terrible day.

But you would be surprised.

My husband’s parents got up and left the house early and instead of my husband jumping up to go to work early, he lingered in bed, then we ate breakfast together and had tea. My son lazed in today so “moozh” and I enjoyed the quiet in the house and he got on the exercise machine while I stretched and yoga’d some more. We spoke some, but mostly enjoyed the sounds of morning – birds, wind, a dog barking. The moments of quiet morning we never get to have anymore.

My son came down cranky at the dog who “wouldn’t shut up and was keeping him awake”. 

Instead of starting the TV right away, my husband took him outside and threw cardboard airplanes and kicked the ball with him for a while. 

I looked outside and saw my husband and son both squatting in the rocks beneath one of our tall flowering bushes talking. Enjoying some moments of morning sunshine and each other. And throwing rocks.

I pittered around the house cleaning a bit and relaxing.

Before my husband left we got ready together – which we never do anymore. Moments of each other grooming and talking.

My son and I relaxed all morning – just getting ready for school and doing nothing much else important. Moments of calm.

My son had a great day at school – no surprise there with his lovely morning moments.

I took some time for myself this afternoon – doing some things I rarely do, reading, taking care of odds and ends.

I took 55 moments for myself going to get a massage to try and work out the pain in my shoulder and neck. Those were lovely and I truly tried to stay in the moment while the body work was being done.

When I got home my son had been playing with his grandma – moments of quiet together.

He “loved me up the stairs before bath”. Moments of him hugging my legs from behind, us trying not to trip and him bumping his head into my butt. 

He had a hard time falling asleep, and after reading a particularly nice relaxing book we snuggled and sang a lullaby to each other. Moments of pure love. 

And now my hubby comes home. 

Perhaps some moments of quiet again before bed.

It truly is the moments. But you have to stop and listen and see them. And enjoy them.