Monthly Archives: November 2012

Why I do what I do

Standard

I’ve had days that I didn’t want The Crumb Diaries page anymore. I have even unpublished the page. I have struggled with the question- am I sharing too much? I am virtually letting over 3,000 people into my living room, to sit at my kitchen table, into my hopes, dreams, memories. I’ve shared so much of our lives with so many of you. I decided from the start that I’d be honest with the good and the bad. Some days I question why I do everything that I do, in the way I parent Logan..

Putting my world out there is not always easy. I’ve been criticized for things I’ve posted, more than once. I’m fortunate to have amazing page admins for friends if I need advice, and its kept me on track, but I still do question myself and my motives. Do I need the support of 3,000 people? Do I want to let people see what a day in the life of a special needs family is like? Do I want to give other special needs families with young kids hope for a fun and bright future? The honest truth is yes, yes to all of these things, but there is a far, far bigger reason I maintain the page and continue to share.

The biggest reason is- I refuse to allow Logan’s struggles to be in vain. He has to work so hard at every single thing he does, and I will not accept that its for nothing. To watch someone make such a huge effort just to ask a simple question, and then grin with a sweetness in his eye is just heartbreaking but heart lifting at the exact same time. It can’t be for nothing. My purpose is to share and give hope to soooo many families out there with young children newly diagnosed, searching for a path, wondering about a future.

I am his means of communication, his platform. Through me, he reaches all of you. I get some extremely nice messages telling me how he has touched people’s lives. He has either changed their view on special needs folks, or he has given them hope for their own special needs child. When Logan was young and his struggles were becoming clear, I searched for that hope. I am so honored that you take the time to read what I write, and I can share that hope with you.  I am so honored that I have been given this hope, who I call my son.

Advertisements

My Thanksgiving wish for you

Standard

I was born on Thanksgiving Day. It’s been a running joke in my family that I am the Turkey, I cost mom her real turkey dinner, dad had to eat alone with his in-laws, the nurses bitched they were at the hospital not home with their families etc. Not the best holiday to be born on, but definitely not the worst.

Over the last 39 yrs (yep countdown is on to the big 4-0 now) I couldn’t tell you how many times my birthday has actually fallen on Thanksgiving..I think I remember it happening when I was 11..maybe again in my teens, and now today. It’s kind of cool, being all together anyways, having a feast, then just adding the cake in as a bonus. As we get older, the presents and cake and party all sort of lose the magical feel, and it’s just another day, another year older.

This year is my first Thanksgiving or birthday without my mother-in-law, who passed in March. She was more like a mother to me than a mother-in-law, never having made me feel that I was stealing her son, but more that she had gained a daughter and she loved me very, very much. Obviously she crosses my mind often..but last night going to sleep I had no idea that I would wake up with such a conscious ache that this is the first significant holiday without her and I get double whammied. I miss her. A lot.

I’ve written about losing her, and some other family members in my blog titled ‘loss’. It’s been tough with Logan, and I’m sure more than once today he will mention Nanny.

Holidays are often rushed. We are often racing around, wanting everything perfect, is the gravy too thick? The turkey too dry? Ugh too much/not enough salt in the potatoes. We might push kids aside “get out of the way of the TV! the games on!!”  Really, looking back on past holidays, do you remember every bite of your meal? Do you remember who won every game? Or do you remember the time spent, who may have shown up or sat next to you, what you learned about someones life that day? Maybe you sat around and laughed at old memories, stories of years gone by when the kids were small and had squash stuck in their hair at the dinner table.

I am not one to ‘preach’ about tradition or tell you that you aren’t doing it right, that’s not what I’m saying here at all. I’m simply saying my mother-in-law is gone. My grandparents are gone. My uncle is gone. All I have left of them are these memories of the times spent together. So when you’re pushing a kid aside to mix the potatoes, or shushing your mom because a score is being announced, remember you can never, ever get that moment back to do over.

This holiday, love. Laugh. Live together in the moment. Take lots of pictures. Blow off the stress, let it go. Perfect is boring, these moments are not forever. They are fleeting, they are gone in an instant-cherish them, embrace them.

Happy thanksgiving to you and yours. I hope everyone has a wonderful day full of laughter, love and warm embraces. If you are estranged from someone you wish you were with today, make the call, say your peace. Life flies by us, so many of us are on the fast track. Take this day to slow the pace.

Peace & love.

Who do you do things for? …really?

Standard

Recently I’ve been thinking about something interesting- maybe more like questioning myself actually…”who do you do things for?” I don’t mean who do you cook meals for, or bring home a favorite video game for. I mean who do you dress up for, do your hair or apply makeup for, buy that brand new car for, upgrade to a bigger house for?

I know for myself, I’m happier to go without washing my hair, throwing it up in an elastic, putting on a sweatshirt over my pj top and eat some ice cream instead of going to the gym. I realize this is my personal preference, and honestly if I were able to do this every day, after a while it may get old. Some days I do just say screw it and go with the elastic and sweatshirt, but most days I am presentable. I don’t work at a job dealing with public, I could wear a clown costume if I really wanted to, but something makes me pick out an outfit, flat iron my hair. What? If being a slob is what makes me happy, why do I fight it and pull myself together?

I get it that we feel better when we look better, and maybe even when we have nice things, but who do you think notices the difference between a Coach bag or a knock off? I am guilty, I have a few Coach bags, and paid too much for them, but why? I’m not even sure I can answer this myself. It’s not like its way better quality than something cheaper. It doesn’t have extra room that I can’t find in another purse. So…why?

Put it this way. If you were living all alone in a city- literally nobody else around- would you bother doing the things you do? If not, then that probably means, you are doing it for someone else. We make decisions based on who we might bump into, who might approve/disapprove of our choices.

If you could buy a used car for $10,000 that was guaranteed to run for 10 yrs, why would you spend $20,000 on the same car but with a fancy emblem on it? Because of who might see you driving it? I am not saying that everybody does this- if this does not apply to you, then disregard. I am saying a lot of people live their lives this way and don’t even realize it. They live beyond their means simply to impress someone else when in reality does that someone else even care?

I would love LOVE a new car. LOVE, did I say love? But- my car is paid for, my car runs okay. I need to decide how bad I want the new car (which will not be NEW, just new to me). I have to decide if this way of thinking will help me or hurt me. I have to decide if this money is worth taking from something else that may come up in the future. I have to make this decision based on these things- NOT on what I think people will say when they see me driving my new car, but I’m finding this kind of hard.

You see it allllllll the time on Facebook “I got a new this! I got a new that!” Okay..good for you, how many ‘likes’ did you get? Was it worth the $35k you just shelled out? I really hope so!


I know people work hard, they want nice stuff. I know I do. I know I want that new car BAD. Just make sure you’re doing it for you, not for what someone else thinks about it. Don’t drive yourself into debt for it- because after everyone says “ooohh ahhhh aren’t you successful? wowwww!” they aren’t paying your bills. Make sure those ooh’s and aaah’s are well worth it. Image isn’t everything- your happiness and your future is. PS. I still want a new car.

Sweet Dreams

Standard

Once upon a time, there lived a very young, naive woman who fell in love, married, and had big dreams for her life. Her first born was a daughter, and she was elated. She decked her out in all things beautiful, signed her up for dance classes, treated her like a little princess. She told her every day how much she loved her, that girls could do anything and that perfect was boring.

Her second born was a son, and she was ecstatic. She thought of all the fun boy things to come, trucks, baseball, mud and fishing.

She wrote letters to these children as they grew, starting before they were even born, tucking them away in a special place for them to read as adults. They expressed all of her love, hopes and dreams for them and their futures.

The years went by, some dreams came to fruition, some slipped through the cracks. Over time this woman grew up enough to realize that some dreams slipping away were okay, as hard as they were to let go of. She learned to realize that a new dream, a different reality, was not only just acceptable, but also enjoyable.

Letting go of dreams is not easy, but it is possible. Learning to love what you have been given, not trying to change it, never judging or punishing it, and helping to nourish and encourage it as a brand new dream is success. Every person has their own dream, especially for their children, but sometimes they just aren’t possible and alterations or adjustments are required. It’s a process, and it took the woman a long time to accept and embrace the process as her own.

Whether your dream is for your child to go to Harvard, or for your child to simply speak someday- its your own private dream between you and your child. Don’t compare it to anyone else’s, and don’t expect the same successes as the kid next door, or even as your other children. Some things are simply beyond our control, and acceptance is a crucial step in helping these kids attain their dreams.

I am totally okay with being this woman. I love our dreams.

Am I racist?

Standard

Having a Facebook page has pushed a couple things in my face.

1- Not everybody agrees with me. This is not surprising to me.
 
2- People love to argue. This is not surprising to me.
 
3- People don’t always get what I am trying to say. This is not surprising to me.
 
4- I can’t say anything without being made to feel I am not being Politically Correct enough.
   
This surprises me, and frustrates me.



Where do we draw the line on being “PC”? Can we say ANYTHING and state a fact without someone twisting it up, turning it upside down and making it mean something it doesn’t?

Fact- We have our first EVER black president. This is A BIG DEAL. Do people forget that there was a time when our black citizens could not even vote? I don’t. Even after the 15th amendment was enacted, it still took another century to make this a reality for all black people. So, excuse me for pointing out the fact that our president is indeed black. It’s awesome. It’s progress. It’s way too freaking overdue and I think we should be ashamed of ourselves.

I am in no way saying that President Obama should be president simply because he is black, so please don’t get it twisted (yet again). In fact, I am not a big Obama supporter (not a Romney fan either and this is not about where I stand). I mentioned having a black president as being ‘progress’, and more than one person had to ask “why do you need to make it a black thing” “You shouldn’t mention that he is black” “If we’d elected Romney would you mention the fact that he is white?”

What is wrong with you people?? Of course if Romney were elected I wouldn’t mention him being white, because another white president would not be a big deal! I also pointed out that Elizabeth Warren is the first woman to represent Massachusetts in the U.S. Senate. If Scott Brown had won, there would be nothing more to say about it. Its the fact that she is FEMALE that makes it something to mention. It’s a big deal, it’s progress. A century ago, women couldn’t even vote!

This is about the simple fact that we cannot seem to say ANYTHING without someone calling “YOU SAID BLACK YOU ARE A RACIST OMG!” Just stop. Please. PLEASE!

I made a comment recently about Logan having a certain shape to his eyes, and he feels he is Chinese. Again. “You stereotype!” wait…how is stating how a Chinese persons eyes look a STEREOTYPE? This is a physical trait of a Chinese person. Logan has something similar. I said nothing negative, I said nothing ridiculing, I simply stated a fact, and got called out for it.

You know Daddy Doin’ Work? He made a comment in a blog post that one of the things he feared about raising a daughter, was the fact that he sees so many girls dressed skimpily, acting provocatively. Well the ‘slut shamers’ came out in full force! He was called all sorts of things- it was ridiculous. He was simply stating a fact. He sees girls looking and acting a way he hopes will not influence his daughter in the future.

Having a page, I know I get judged. I feel I am an open minded person, I mean, how could I possibly ask you and expect you to accept my child with his differences, but then toss judgement around onto others? I wouldn’t.

When you read someones thoughts, just take it for what it is. Don’t assume there is some hidden meaning in the post, and don’t twist it just so you can argue about it. If you comfortable with your own beliefs, you don’t NEED to push them onto someone else. Just be cool with you, that should be enough.

One clarification

Standard

I know, I know. I am too sensitive. The pages I follow have huge followings, and they are often subjected to criticism and take it in stride. I just take things to heart I guess, most likely because I am still so new at this, and I hope that I will harden with time and experience, and keep taking advice from my favorite admins.

I guess I’m mostly bothered because I try so hard to paint an honest picture, and give a view of all sides of our lives. The good, the bad, the sad, the funny. We had a couple heavy days, and this was something light and funny. It felt good to share a smile after 2 days of crap.

I wish everyone had the attitude and outlook that Logan has. 100% open mind, open heart. In our family, we fall into all kinds of stereo typed categories. The girls are blond. My husband is a mechanic. Logan is overweight and has special needs. We are Polish. I was a teen mother. None of these matter. We can joke about all of them and care about none of them.

We have friends that own multi-million dollar corporations, and friends that are homeless, sleeping on another friends couch. We have friends that are bilingual, we have friends that are deaf. We have friends that are vegetarians, and friends that raise meat cattle for a living. We may have a policeman at our dinner table, and then a felon the very next night. My daughter works for and with all Chinese people, and married a Puerto Rican man. We have never, and would never judge anyone for any of these meaningless things. Logan has never been taught to stereotype, laugh at, judge or dislike someone for any reason other than their behavior.

I know I don’t have to explain myself. I do realize this. I just don’t want anything to be unclear, and if you are following my page, I want you to have a full understanding as to what we are about. I’ve never felt so judged before, and to have it be about something that was so off base really bothered me. I cant help it. I just need to toughen up.

Scarred for Life-part 5 "Damn you thyroid of steel" guest post by Ashley Laskiewicz

Standard

This is a guest post done by my sister Ash. She is starting her own “blogging journey” and will be sharing here as well as on her own personal Facebook page. I lived this as a sister- and it was terrifying. I am eager to read this journey from her point of view.

To link directly to Ash’s blog click HERE

Blog- Scarred for Life

Entry 5- Damn you thyroid of steel

Sadly at this point my thyroid of steel became a joke at the doctors office…But honestly if I didn’t laugh.. I wanted to cry….We celebrated Morgan’s first birthday…. then the anniversary of my surgery came and went……we got through the holidays…. then it was time to gear up for round 3….Off my meds I went….this time it really felt like no big deal…and it was an even smaller dose…

The girls loved staying with my parents…so that part was not a problem…the problem this time was, my parents lived in mass…we lived in maine…and John was going away snowmobiling for a few days..exactly the same time I’d be radio active….I didn’t want to stay home alone and I couldn’t stay at my parents because of the kids….soooo I went on an ALL guys snowmobile trip with John….what an experience that turned out to be….I was the running joke the entire time…Hey Ash are you glowing?? Hey Ash can you come stand next to my food and heat it up??? Hey John when you kiss her does she spark…hahaha… very funny guys!!

Like the other times the first day or so I was okay..but by the third day I was miserable…I sucked it up and did what I had to do so John still enjoyed his guys trip….the guys took good care of me and knew what I was going through…they didn’t care if I wanted to pull over for a break…or go to bed early….
we still laugh about me tagging along it to this day….

I don’t remember going back for another scan….I don’t remember much about the meds after that last treatment..I remember being frustrated about how I still felt..now 25 yrs old…I felt fat…depressed…worn down…I felt like I was someone I wasn’t supposed to be….I actually remember just saying fuck it and not going back to the endocrinologist for a while….I’m not sure if it was because I didn’t want to get any more bad news..or if I just needed a break….

When I moved to New Hampshire…. I found an endocrinologist in Hampton who was pretty good and much closer for blood work…but this guy was more into the diabetes side of the endocrine system so he didn’t really do much for me and was constantly changing my doses…and every time something about my dose changed…I changed…..weight gain/ weight loss..anxiety..depression..fatigue..hair loss..etc…

Lucky for me this endocrinologist moved his practice and he was replaced by a lady..I still see her and really like her a lot…she’s awesome and takes me very seriously and most importantly listens to what I have to say…she is also very thorough …she has kept up with my blood work and ultra sounds…I have my blood drawn every 7 weeks and she calls me and lets me know the results right away…

During an appointment last May….she was saying how surprised she was that I can tolerate the amount of medication I take….so she wanted me to give her the run down on when I take my meds….When do you take your medication??… In the morning….what do you take it with??.. My coffee…what do you put in your coffee??…Cream…did you know cream has calcium in it and that will block your medication???… Nope I didn’t….how long have you been taking your meds this way??
10 yrs!!!

So I had been taking my meds with something that blocked the absorption and depending on how much coffee I drank each morning and how much cream I dumped in… it was always a crap shoot on the amount of medication my body was getting!!!!

All these years and they never asked and I never knew how in the world my levels where constantly off….So let’s fix this…sounds easy right??? WRONG!!!

Basically they calculate your meds on your weight…so I should be taking roughly 108mcg (micrograms) per day…I have been taking almost 200mcg daily….so since May I have changed my schedule….I now take my meds at night….now every time I have my blood drawn my levels are through the roof..because I don’t have anything blocking it anymore…she has been changing the dose very slowly…taking a half of tab away at a time… I wait 7 weeks on the new dose and then they check…it’s been long and stressful and every blood draw I’m excited to hear the results…but so far every time has been another medication change and another 7 long weeks of feeling like total shit…

The last medication change was the worst..I called and begged to be seen…I explained how awful I felt…They were sorry but I’d have to wait out the 7 weeks until it leveled out and they could check the bloodwork…I swear it was the longest 7 weeks I’ve had in a long time….It’s harder now to hide it….I get moody and tired…I have a hard time focusing on simple things like helping my kids with homework… I swear sometimes I feel like I’m on another planet…

Finally it was time for my bloodwork…she also called and said she would like to schedule an ultrasound…..ok sure…

Two weeks ago I had my bloodwork and ultrasound… going to the ultrasound I felt uneasy…I can’t explain why…I just did…They took me right in and I laid down…having them press on your neck with that stupid thing sucks…It’s hard not to swallow…we went over my history and I noticed she was spending more time and taking more pictures of a certain spot…she called in another person and the mood changed…I fought back the tears and tried to breath…I’m reading into this I know it…it was over and I remember her saying that they would have the radiologist read this right away and my doctor would have the results by the morning….results of what?? wasn’t this just a routine ultra sound??… My husband told me to relax…my friends said don’t worry….I never got a call so I figured no news was good news….

It’s so easy for people to simply say “don’t worry…things will be fine”…after they tell you these words and even though they really do mean it…their life goes on…they are not waiting…wondering….worrying I will not be relieved until I hear there is nothing in there….I’m not saying that waiting for results aren’t hard on everyone….but I think the anticipation of results is a bit more intense for someone who’s had cancer…..every time I’m sick for a long time…every pain that doesn’t go away…every weird unexplained symptom… I’m not gonna lie….I think oh shit it’s come back to finish it’s job…it’s come back to get me…I don’t know if I’ll ever be worry free of this…ever…

In 28 days the little person that was growing in my belly when that lump was found will be 11…it’s been almost 11 yrs!! Some days I look back and cannot believe it….some days it seems like yesterday….it was a crazy experience….that is for sure…and I wouldn’t wish it on anyone…

The past 11 yrs haven’t always revolved around this…it’s something I’ve learned to deal with and live with everyday….I’ve been healthy and fortunate enough to travel with my husband and kids…we snowmobile in the winter and camp in the summer…After being a stay at home mom and doing daycare out of my home I recently went back to school and now work as an LNA…life is good!!

Last week I showed up for my appointment….First thing is step on the scale….I’d lost a few lbs…always a good thing in my book…the nurse rooms me and takes my blood pressure and asks how I am feeling….I tell her crappy and she writes down everything I say….finally my adorable little doctor comes in….she sits and says …well what do you think I’m going to tell you??… I say..my meds have got to be off I feel like crap ….she tells me I’m correct…..go figure….so we decrease once again and wait…

Moving on…she brings up the ultra sound….I can feel my eyes start to water and burn..deep breaths…and then she says it…They found malignant looking lymph nodes on the same side they found my tumor…..she went on to say that the cancer markers in my blood are non detectable and that is very positive…lymph nodes can looks weird for a number of reasons so there’s no need to panic…we will have more blood work in 7 weeks and a follow up ultra sound in a few months…have a nice day…

I cried all the way home…I took some time off from work and changed my schedule a little bit…I’m trying not to let this worry take over…waiting sucks..medication sucks..blood work sucks…cancer sucks

I know a lot of people that have read this didn’t know any of it….it’s not something you just meet someone and share…Hi my name is Ash and I had cancer…no it’s not like that…although I’m not bothered by my scar and don’t mind talking about this…it’s not a trophy..for me it’s a painful reminder..

I’ve also had people that are very close to me ask themselves..where was I??..what the hell was I doing when you were going through this??…well I have asked myself the same things…why didn’t I share more?? ..why didn’t I ask for more help???…I think during tough times you go into survival mode..and I was probably doing just that…surviving..

I believe everything happens for a reason…I never did before until I got diagnosed with cancer…I don’t think I got cancer for a reason.. I think I got pregnant for a reason…If I had never gotten pregnant..they may not have found the lump….maybe not until it was to late …do I think I had the best cancer ever??…NO…but I do think it could have been a lot worse…

I believe I got my guardian angel early…her name is Morgan