Monthly Archives: September 2012

Embrace your day

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Last night I was scrolling through my inbox. I get many, many messages saying the sweetest things. They usually express that they feel encouraged or inspired by my posts. I love this, but I don’t feel worthy of this- so I struggle.

The reality is, Logan is the star here, and I am simply a messenger, or an interpreter in some instances. I have learned how to interact with him and bring out the best and worst in him, and I share that on my page for lots of reasons…but I feel guilty getting any credit for it.

I know, I know, I raised him, I should accept some credit, but honestly I just did what any and every parent does on a daily basis. Loved him, took care of him, helped him. His spirit is unique, and I am just very, very lucky that I got to be his parent.

Some days I have a hard time with it, with the fact that he struggles. I want things to be easier for him, more “normal”, and not being able to give him that really hurts, but he brings me back up with a smile or a “honey nugget” and all is well for a while.

The truth about parenting, or about my life as a whole is, I have screwed up a lot. More than I care to admit, even to myself. I’ve been mean, I’ve been bitchy, I’ve been judgemental. I’ve said things I later regretted, and forgot to do important things I should have done. I’m human, but I’ve stumbled quite a bit. Logan helps me realize that this is all okay. These flaws, these screw ups, these personality traits I’m less proud of- they make me who I am, and they’re okay- because overall I’m a good person. I try my best (almost) every day. I am aware of my mistakes and try not to follow those paths again.

Logan has taught me all of this. It’s taken me almost 39 years to reach a place where I can really appreciate this. After 23+ years with my husband, I can finally appreciate him. We really butted heads for a long, long time after we realized Logan was having some issues. We coped differently and he really went off the deep end on me for a while there. He wasn’t dealing well and he surely wasn’t helping me, and I resented him for a long time for that. It’s taken him years to make that up to  me, but I’m really glad we sucked it up and pushed through it.

So, I’m not a perfect super-mom. I haven’t figured out the answers to how to parent a kid who needs extra help. I’m just like every other mom, with failures, laundry that needs to be done, screw ups, a few pounds that need to be lost, and a husband who can absolutely drive me nutty- but it all works.

Take whatever you have in your life, and strip it down to what matters. It really makes you appreciate it fully. It may take a while, but you’ll get there. I did. I never thought I would, but I did. Now I think back to all of those years spent wandering around in my own head, like a ship afloat with no course, and I think to myself, wow, how did you even cope day to day? I am so anchored now, I can’t imagine going back to that, but in reality, anything can send you spiraling off course, and there’s little you can do to prevent it…so embrace what you have solid and good in your life today, even if that’s a husband or wife who drives you nuts, or a screaming kid who you just want to walk away from. You can never tell what tomorrow may bring to your doorstep, and you might look back and wish you’d made the most of what you had yesterday.

Logan bustin’ a move at Abby’s wedding

I wish we could all live just a little bit more like Logan. If he’s tired, he takes a nap- so what if it’s not ‘cool’ for a teenaged boy to nap? If we’re at a party or wedding, he dances- no matter what type of music, he is out there. If it’s a hot day- he is at the beach in his bathing suit having a blast, he doesn’t mind that he needs to lose a few pounds. Logan has taught me to embrace the day, make the most of your life, and appreciate the little things.

Guilt

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Now that I am over the initial shock of the condition of Logan’s feet, I can think a bit more logically and realize that this wasn’t my fault. I cried when I saw them, felt sick, panic stricken almost, at the thought that this could have gone on right under my nose without me knowing. I felt guilty and so, so sad that he endured this without complaint. He must know I would have helped him, had he said something. Why wouldn’t he say something? After thinking about this for a couple of hours, I know why he didn’t. He is Logan.

Logan is a tough as nails kid, who has been through a lot. Other kids have endured much, much more than he has, but he really has gone through quite a bit. After being born with a cord around his neck, he was in the doctor’s office off and on for 8 weeks until he was admitted into Boston Children’s Hospital for surgery. Over the course of the next several years he had multiple MRI’s, CTscan’s, bone density testing, organ and lung biopsies, scopes put into his stomach and lungs, sweat tests, countless blood draw, and many, many hospital stays with IV.

He is doctor shy because of this. When he was little we’d go in to the doctor for a cough or a tummy ache and we’d end up in the hospital on an IV. He remembers all of this. He still talks about this. He is somewhat traumatized by this. He once walked around for 4 weeks on a fractured growth plate in his foot with minimal complaint. I have had to become a detective and pick up on subtle clues, piecing a puzzle together and determine if he needs medical attention or not.

His memory of these doctor’s visits are vivid in some instances. He will talk about a song that was on the radio, the day we were pulling into the hospital parking lot- for something, I can’t even recall what, a year ago. Some of these hospital memories are deeply ingrained in his mind. Since we have had 4 major deaths in the last few years, he has become even more hesitant to go to the doctors. It makes me so sad for him, and I try so hard to make sure everything is explained to him ahead of time, but he knows as well as I do, if the doctor wants to send you for tests, or if you need to be admitted for treatment- that’s that and we’re going.

Fortunately, Logan hasn’t had to be in the hospital for anything overnight for about 4 years. I wish he could let go of some of these fears. Its something we work on.

It’s amazing how we as mothers parents take all of this burden of blame upon ourselves. 1,000 kisses and hugs, 500 bedtime stories, hundreds of delicious meals, warm baths, loads of clean folded laundry- all of the things we do to care for our kids and make sure they’re comfortable can be cancelled out in an instant over one situation like this. Years of good and nurturing parenting- tossed right out the window in our own minds. It’s crazy. We need to learn to accept that even in the most loving and vigilant household, things slip by us. We’re busy, we’re working, we’re grocery shopping, getting gas, paying bills. I was preoccupied with Abby coming home and Kevin going away. If you aren’t familiar with what I am talking about regarding Abby & Kev, please read this blog entry.

So, I will go home tonight, and give Logan an extra big hug and kiss and tend to his poor feet. But I won’t continue to beat myself up over this, it’s not helping either of us. We’re all still learning as we go.

Thank you Humble

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There I sat, for years- first in MySpace, then my friend Lori talked me into Facebook. It was scary, hard to figure out, and I hated it at first. Once I ‘got’ it, I was hooked. I could see what my friends were up to, who they married, what their kids looked like, but most of all, I could see what Abby and her friends were doing. It was FUN. It was like I was a techno voyeur, lurking around, clicking on pix, status updates, comments.

After a while, Logan’s classmates started making accounts. At first they were little kid accounts, and nobody posted much. A few added Abby and I would poke around a little. After a while, the accounts became more real, and I was seeing pictures of girls Logan’s age in bikinis, and boys riding dirt bikes. Honestly, this part of Facebook totally sucked for me.

I am not a catty person. I am not an “oh you look so great at 40 so I freakin hate you” person. I’m glad for my friends who are successful, skinny, living the dream. I loved looking at Abby’s classmates prom photos, and would smile at the gorgeous dresses, the handsome dates. But for the kids Logan’s age, I couldn’t get happy. I couldn’t bring a smile out of myself. I was jealous, and that’s not in my nature.

I was sinking- the hole was deep and dark, and I was partway down. Facebook wasn’t fun anymore, and I was logging in less and less. I didn’t want to see it anymore. I wanted to think of Logan’s classmates as little kids who were still watching cartoons, not kids who would soon be driving and dating and doing the stuff that teens do- and now post about.

Around wintertime or so, I came across a page. I read some of her posts, and I felt connected for some reason. I read quietly, not really commenting, I wasn’t in a place to share. I wasn’t in a mood to converse. I kept reading. She made me smile, she touched my heart, she woke me up. That page is Slice of Humble. I posted a photo to her wall one day of Abby and Logan at Abby’s wedding. Her response was so warm, so genuine. I knew I liked this girl. I continued to just love and laugh with her page, and that was enough for then.

After being a Humble fan for quite some time, and struggling with all of the shitty emotions I was feeling, I decided to vent them all- the good, the bad and the ugly- on my own page. I 100% credit Humble for giving me the courage to put it all out there- and it feels great. I feel like I can share something about Logan with all of you that most people never see, because he can’t express himself like most teens his age. He is locked in a world where his thoughts often go unheard, and its not fair. I give him a voice and he gives me a purpose.

I want to thank my lovely Humble for holding my hand- even if she didn’t realize it. If I had never found the Slice of Humble page, I probably wouldn’t have made my page, and I wouldn’t be sharing and venting and laughing and crying so openly. This has become my platform to help the world know an amazing kid, and it’s also become my therapy. I am forever grateful.

Paige needs us

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You are going about your daily life, your busy schedule,  grocery shopping, paying bills, walking your dog. Your phone rings- and your world is flipped upside down.

Your child has been in an accident. She is on her way to the closest nearby big city hospital via LifeFlight helicopter. Your life and hers will never be the same.
A fellow ‘townie’ in my small town, Virginia Page, recently experienced this tragic scenario with her beautiful daughter Paige. Paige is just 18 years old- vibrant, full of life, beautiful.
She has suffered devastating injuries that required the loss of her foot and part of her leg. She will have more surgeries and a long hospital stay- and then a long road to recovery.
I’ve known Ginnie for about 25 years give or take. She’s a hard working chick- who does what it takes to get by. She’s an amazingly talented photographer– capturing some wonderful images, including Logan in his first canoe race, which she graciously gave me the following day. She has 2 daughters, whom she adores and are often the gorgeous subjects of her photographs.
This family needs our help. Please “like” the Facebook page  Let’s Help Paige for updates. This could happen to anybody- to any of us. I know its easy to say “its just a leg” and “at least she’s alive”- and I believe a positive attitude is best. But its not your leg. Its not your child’s leg. This has got to be the hardest thing they will ever walk through- and they need our support.
Like I said, I know these girls. They are some tough cookies, and I know they will soar through this with grace- but not ease. That is the part they need help with. If you can do something- anything- to help ease the burden while they focus on recovery, please consider making a donation. A mother shouldn’t have to stress and lose sleep over missing income while she is at her daughters bedside holding her hand.
Several businesses are pitching in to help. Donations can be made to The Paige Fortin Recovery Fund.

The Liebster Award!

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I was bestowed the Liebster Blog Award from Slice of Humble  over at Humble Writes Words

Tada!!!

This is pretty cool, considering I: a) have not been doing this for all that long

b) idolize and adore Slice of Humble
c) LOVE AWARDS!!
It’s a great way to share our blogs, and see is reading who. I LOVE the fact that the bloggers I have met and interact with support each other. This is one of the best things I have found about blogging.
 

How the Liebster Award works…

1. Thank the Leibster Award presenter on your blog
2. Link back to the blogger who presented it to you
3. Copy and paste the award on your blog
4. Present the award to 5 blogs that deserve to be noticed
5. Let them know they have been presented with the Liebster Award by commenting on their blog
6. Jump on one foot
7. Make a wish
8. Remember you are awesome

(Humble, did you add 6, 7 & 8??)..cuz I totally did this

Here are the blogs that I think deserve special recognition for putting themselves and their words out there.

 
 
These 5 blogs, and the women who write them- have all been a support to me and friends to me. I enjoy their posts, and their company.
 
XOXOXO much love to you ladies!

An open letter to all parents

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Hi : ) Especially hi to all the folks who are brand new to this blog. I just wanted to write a very quick letter (aka blog) because of an inboxed message that I received today.

The message was from a person that I know, and they have kids of their own. Their children do not have any special needs. The message was sent because this person was a bit hurt that I have implied that they do not ‘understand’ and that we special needs parents have a bond that other people don’t ‘get’.

I read this, then re-read it. I did reply, and I would like to share with you what I said, because I, in no way, have meant to offend or alienate anyone- I realize all (or most) parents love their children with all of their hearts, fight for them on a daily basis, and have strong bonds with them. I would never imply otherwise. I have a daughter without any special needs, and I feel the same love, dedication and devotion to her as I feel for Logan- its just a little bit different.

What I mean when I say that special needs parents have a bond is this:

Parenting a child is tough. I get that. I have done that, and am doing that. You have your child, he/she grows, develops a personality, learns his/her ABC’s, enrolls in school, maybe joins soccer/brownies/swimming- whatever. I did all of this with Abby, I get it. She was an early talker, and picked things up very quickly. She went to school, made friends, brought home papers with star stickers on them. She played soccer (albeit not very well) and we went to practices, games, had pictures taken- all that. She joined Brownie’s, after school programs, got invited to birthday parties. She received awards, did Science projects, and made Christmas lists.

I proudly shared these moments with others. I called up friends and relayed her progress “Abby won a trophy! Abby got straight A’s!”

When you have a child with any significant special needs- now, this can be mental, emotional or physical- this can even be illness or injury related- but if you have a child who has needs, the things I listed above may be extremely difficult to achieve, or absent all together. This makes parenting a child with special needs extremely lonely. If you are lacking things to brag about, or if your things are very small (to others, not to you!), some parents might not appreciate this huge achievement the way a parent who is experiencing this might. I mean honestly- if your little Susie just won Class President today, but your friend’s teenager learned to tie his shoes today, although you may realize this is an accomplishment, you might not understand that this achievement feels the same to us- see what I mean?

When you have another parent who has a child that has also watched an entire class of kids pass by- you have a bond. When you have another parent who has a child who does not get invited to birthday parties, cannot pass in a Science project, cannot write out a Christmas list- you have a bond. You have an unspoken understanding- you know how that parent feels.

I have been, and continue to be on both sides of this fence. I have one child who excels- she is fantastic at anything she sets her mind to doing, and I have one child who struggles to write his own name. I love them equally, but I support them differently. Unless you have a child who needs this type of “different” support, you can’t relate- as hard as you may try.

I don’t want to make anyone feel like I am saying they are less of a parent- that’s not IN ANY WAY what I am saying! You SHOULD be proud, you should share the excitement of trophies and awards and good grades. I WANT to hear about those things! I’m proud of your child too, because its tough to be a kid these days. I love parents who want to brag! I just want you to know that although I am happy for you and your child, I am envious at times. I wouldn’t trade Logan for anything- and I wouldn’t change him. I wish things were easier for him, yes, but I would never want him to be different.

I just want you all to know- although I may post about our struggles, his struggles- and I may post about our fight- I understand that every parent is fighting, and every child struggles with something at some point. I am on a more difficult journey than some of you, and some of you are on a more difficult journey than I am, but we are all on a journey that hopefully ends with our kids growing into happy adults.

Look inside yourself

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I need to be skinnier to love myself. I just shared that on my page, and it got me thinking. I’m guilty of this, I think most girls/women (men even?) are. We are 5 lbs over, 10 lbs, 50 lbs over what we ‘think’ is our ideal weight, or we are not the shape we wish we were.

What’s surprising to me, is how often someone will express their unhappiness with their own weight – and so many of us immediately argue with them. We tell them they’re nuts! They aren’t “fat” or aren’t as overweight as they think. This tells me that more often than not, its our self image- not 100% our weight, and this is sad to me. There is an awesome website called My Body Gallery FULL of every height, weight, size woman you can think of. You punch in your own specs and it shows you what you really look like (or close to it). Check it out- I am willing to bet you will be surprised and think “wow, those women don’t look as bad as I picture myself looking”.

Everyone wants to be healthy. Everyone wants to be desirable, looked up to, respected. This is not the definition of skinny or thin. You can carry a few extra pounds and be attractive, sexy, respected, desired, loved.

One person, who we all know and love, that does not let their body interfere with their happiness- is Logan. We can all learn something from him about this. Logan was a failure to thrive baby/toddler. He was extremely underweight for almost 5 yrs. We worked hard to bulk him up, and eventually he turned the corner and the weight started to go the other way. Nobody can say if this was due to an undiagnosed genetic condition, and it can be frustrating. He eats well, not a health food nut by any means, but not a junk food junkie. He likes fruits, vegetables, fish etc. He drinks water. He is extremely active. He is just very overweight. But he is unaffected by this (for the most part).

He will go to the beach- strip his shirt off- and bound down the sand to the water- totally uninhibited. I envy that in him. I wish I could do that. He has a confidence- regardless of his weight- and I think this is his innocence coming into play. He has not been bombarded by the messages that we have in our society. You HAVE to be thin. You HAVE to be fit. You HAVE to be the ideal- for people to like/love/want/respect you. He doesn’t have any of these emotional seeds planted in his head. He likes people if they are nice, if they treat him well- not if they are in shape- so he expects the same out of us. He has no shame in his game, it does not cross his mind that someone may judge him based on his appearance.

If you are kind, smart, respectful, loving- shouldn’t that be enough? Don’t live every day wishing you were thinner. Thinner does not mean better. It’s a mental/emotional trap set by beauty standards that 98% of us cannot live up to. That’s why we’re not all supermodels, we’re not all on the covers of magazines. Don’t live in a “I’m too fat for that” fog. Get out there and enjoy your life. You loved to swim as a kid but now despise bathing suit season? Find a beach where nobody knows you- and let it fly! The feeling is liberating. You used to work out but now feel like a chubs on the treadmill? Go to the gym if you want- and hold your head high. You’re there for you and your health, not to achieve the gym bunny on the elliptical’s physique, or to impress the buff guy bench pressing. Don’t let them intimidate you- you are NOT LESS than them. You are waiting to reward your weight loss with a new outfit? Buy it now! When you look good, you feel good. If you are intent on losing weight and getting in better shape- that’s awesome! But feel good while you’re doing it, don’t beat yourself up. Keep your chin up, and your spirits will stay up.

Love your heart. Love your soul. Love your intelligence. Love your sense of humor. Love your loyalty to your family. Love yourself- no matter what shape/size/weight. You matter, you’re worth it.