Whirling Dervish

Those are the words recently used to describe our dear sweet Chloe. I have to admit, I had to look up what the heck it was, but just from the sound of it, I figured it would fit her. According to Wikipedia.com, they are known as the Whirling Dervishes due to their famous practice of whirling (spinning one’s body in repetitive circles). Chloe does go through life spinning away. Tasmanian Devil also comes to mind. . . I picture her spinning through the house wiping things out as she goes, leaving a path of destruction behind. Or maybe even better yet, an octopus with many arms and tentacles, reaching for and touching, and yes, exploring, EVERYTHING she comes into contact with. A simple example has to be bedtime in the bathroom. She just had a good soaking and it’s time to get her out, while her sister remains in the tub finishing up. I’ve got her all dry and dressed and reach quickly for the toothpaste and toothbrush. As I let go of her for a mere second to put the toothpaste ON the brush, she darts (or whirls) over to the tub and in a flash has her hands in the tub and is hoisting a leg up over the side. I quickly grab her, pull her towards me and start brushing her teeth. As I again let her go briefly to get her sister out, Chloe’s fast like lightening speed leads her to the toilet, where plop, her hands are in. ARGH! Hand washing (and ARM washing, for that matter) and a whole new outfit are in order. All that in a quick 5 minutes. And this is typical of Chloe in the world, hands on or in everything, moving from one thing to another. Don’t get me wrong, I appreciate her desire to learn about and explore her world with the zest she exhibits. I truly think it is one of her gifts. From sick baby to this energized, curious little girl, I DO absolutely count our blessings. It’s just that sometimes, and I really do mean just sometimes, I find myself EXHAUSTED. Mentally and physically exhausted. I know that it’s okay and even on those days when I’m not even sure how I’m going to do this, I can think back to those days of struggle that SHE had and realize that this tough little cookie standing before me is just embracing life for what it is – a series of amazing wonders. . . even if it’s water in the tub or water in the toilet (ewww!), it is amazing to HER and I need to respect that.


It’s interesting. . . we spent this past Saturday at the CT Down Syndrome Congress convention. I was extremely moved repeatedly by the key note speaker and his stories of people with Down syndrome and how they have repeatedly overcome the odds, just like our Chloe. But I also found myself afraid at times. I don’t THINK of Chloe as having Down syndrome most of the time. I just think of her as Chloe. It helps me to NOT think about the future with her sometimes. For example, will she ever get out of this toddler-like stage of getting into everything????? Sometimes I don’t want to hear that the answer is she may not for a long time, because that just overwhelms me… to think like that. Because when I look at HER and see HER and not her Down syndrome I can focus on who she is and who I think she will become because of who SHE IS and not what Down syndrome “predicts” she will become. . . but being at the conference reminds me that she does have this thing called Down syndrome. And it is NOT who Chloe is, but is rather a very important PART OF who she is. And that is something I will embrace.

Halloween Pictures 2011

The Mason-Mann Gangsta's - Halloween 2011

I'm Not As Strong As I Thought I Was

I know it’s been quite awhile since I’ve blogged. Long story short, I got two new jobs, right when the kids started school, have since cut it down to one and am just now getting my head above water. Anyway, today I was watching Grey’s Anatomy during the episode when the baby Zola gets a bowel obstruction and is very sick. I found myself having to turn it off half way through, unable to watch a sick child. It just brings back such strong emotions to when Chloe was sick. I often think it’s all behind me and then the emotions resurface and they’re just so strong. Last week I woke Chloe up and she was clearly not right. Pale lips and very lethargic. My brain (and heart!) were RACING! What the heck is wrong with her??? She didn’t seem to have a cold or a fever or be showing any signs of usual sickness. Was it her heart? I could feel MY heart start to race and near panic set in. I could feel those old emotions coming back. They were so close I could taste them. About an hour after she got up, she vomited and I was actually relieved. “Ah ha, the stomach bug. Now THAT I can handle.” She napped and woke up as if nothing had ever happened. Meanwhile I was left with this “taste in my mouth”. This uneasy feeling, for no reason other than I could so clearly remember how, what felt like just yesterday, sick she was, and at times how close we had come. . . (to what I’m not sure. . . losing her? so hard to conceive . . .)


Last year I did a training where we talked about our experiences at the hospital and what we had learned about ourselves. Not surprisingly, most people commented about how they learned that they are stronger than they ever realized. For me, I had to say the opposite. Through my whole experience with Chloe I learned that I’m NOT as strong as I thought I was. That realization hit me pretty hard. It isn’t fun admitting that you aren’t strong. That maybe, in fact, you are weak. . . and vulnerable. I really struggled with that reality, and I know people will “yes, yes you WERE strong”, but I also know in my heart of hearts, when faced with the possible loss of my own child, I was NOT strong. And I have finally come to the level of acceptance that I can honestly say, it’s okay. No one SHOULD be expected to be strong in such circumstances. That it is OK to FEAR the unimaginable, when the unimaginable is a possible reality. It’s OK to lean on others and find strength in those around you. It’s OK to waiver in your own strength for some day, you will find the strength again. I think I am finally there. Finding my own strength again and accepting my limitations and, if I must say, my weakness.

One thing I MUST say in reflecting on my own sense of weakness is the strength I get from the people around me, even when I have no strength myself. I guess one of my greatest strengths in Chloe’s situation was building up my community to help support me when I DID waiver. So once again, thanks to all who have stood by us, held us up, held our hands and heads, provided shoulders to cry on, support and food and gifts, special outings for the big kids, an ear, a prayer, a positive thought. . . no help is too small. . . to all of you, thank you for being my strength. I guess when I look at it that way, I’m really never as weak as I may feel, as my strength is truly gathered from all who support me and us.

What DO you DO with ALL that FREE TIME????

Come on.  I know that's what you're thinking!  Now that I've got 3, yes ALL THREE, kids in school, what the heck am I doing with all my "free time".  You've probably already guessed, I'm watching tv in my pjs, robe and fuzzy socks, while eating away at some chocolately bon-bons.  Yeah, and then reality slips in!  I couldn't do that even if I HAD the time.  Who could sit still when there's so much to be done???  Well, TRUTH be told, I've actually been sick with my husband AND my mom away and had the luck to not be working for a few days this week so I actually SLEPT.  Yes, I said it, slept.  I know you're jealous.  It's been a LONG time since I was able to just sleep, during the day, while I was sick.  Imagine.  A sick day.  Now granted I had to get Chloe off the bus midday and feed her lunch before putting her back down for nap, but I'm not going to complain, because I know how great I had it for a few days.  (don't get me wrong, I was miserable and felt I was of course suffering, being alone and sick, but looking back, I am thankful a) I didn't get sicker and b) that I had the time I did to rest and take care of myself!!!).  I know there are those of you out there that NEVER EVER EVER get a break (I'm thinking of you Lacey!), and I do NOT take my chance for a break for granted.

Anyway, that brings me to what I do with all my "free time" when I'm not sick. . . can you say, "laundry" and "housework" and "school paperwork" and "household management" and "paying bills" and "cleaning" and . . . you get the idea.  It's amazing how much needs to be done.  And then on top of all that, I've started 2 new part-time jobs.  It's quite exciting really.  I haven't "worked" in over a year (and gotten PAID anyway) and I haven't worked outside of the home in over 6 years!  I'm riddled with fears of inadequacy and incompetence, but I'm pep-talking myself back into the working world.  My 2 gigs are like polar opposites, in some ways, similar in others.  I'll be working as a Local Childcare Coordinator for Cultural Care Au Pair helping Au pairs and host families navigate through their exciting relationships together.  I will have about 9 families on my caseload.  It's very part time.  I'm also working in a reunification program for parents of children 0-3 who have had their child removed by the state in hopes of reuniting the family.  This is also starting out very part-time, but will hopefully grow as the program gets more established (it's a fairly new program and represents a change in philosophy by the state to streamlining the reunification process).  It's all very exciting.  I start both positions this coming week, officially, although I've already done some work at both positions over the past several months.  Wish me luck!!!  I feel a little like a fish out of water. ;)

Oh, and by the way, daddy's back!!!!

A Little Family Time and a School Update

The kids hangin' with daddy before he left to go out of town.  We LOVE our daddy!!!! :)

Well, school seems to be going well for everyone.  Chloe still gets on and off the bus with a BIG SMILE.  I get generally great reports that she is happy and enjoying her time at school.  I am so proud of her.  What a big girl.  Xander seems to be settling in nicely to 5th grade, although we had a little homework meltdown last night since daddy was away and basically mommy sucks at math.  Yeah, I said it.  Anyway, our new sitter came to the rescue and helped Xander with his homework!  Xander has also started hockey again.  It was actually nice to get back in the rink last night when I took him to practice.  He's looking good. :)  Sadie is also settling into first grade, despite a brief meltdown yesterday about not wanting to go to school.  She does her homework without a fight and has a new group of friends "the BFF Bad Girls" I guess they call themselves. LOL  Heaven help us.  And to think she's only 6!!!! 

Well, before I sign off, I have to send thoughts and prayers to my hubs and his family.  They lost a wonderful woman after a heroing fight with breast cancer.  I know she will be deeply missed by so many.  She was truly an inspiration.  We are thinking of all those who feel her loss.

First Day of School! SAY WHAT????

Yup, it's true.  Chloe had her first day of school yesterday and it was a smashing success!!!!  She rode the school bus and everything.  Smiles the whole time.  As I strapped her in, she smiled, said "bye" unprompted, and gave me a kiss.  She was ready to go!!!! 

Off she goes!!!!

She wasn't the only one with firsts yesterday.  Sadie headed off for her first FULL DAY of school in first grade and Xander headed off to his first day in middle school (5th grade in our town).

SUCCESS!  It was big day for EVERYONE!

Happy Birthday CHLOE!!!!

Despite a fever that she'd been running for 3 days, Chloe had a wonderful birthday! We celebrated her THIRD birthday in Maine, the place of her birth. For those of you who don't know her story, she was born while we were on vacation in southern Maine just around the 36th/37th weeks. Although we knew we were taking a chance by traveling that far along in the pregnancy, we decided to take the chance with ALL our supplies and medical records in hand. We figured if we were completely ready, she wouldn't come. HA! She showed us. We knew before she was born that she had Down syndrome and a "significant" heart defect that would require surgery 3-4 months after her birth. She was expected to be born healthy and continue being "healthy" until her heart required surgery months after she was born. When she arrived on 8/12/08 just about 4 hours after my water broke and an hour drive to the nearest hospital (Maine Medical Center) she came into the world just as they had expected, healthy and ready to go. She spent only a few hours in the NICU while they monitored and confirmed her heart defect and then roomed in with me. We were able to return to CT (a 5 hour drive postpartum - OUCH) in 2 days. All was going so well when at about 6 days she stopped eating and started sleeping A LOT. The next 6-12 months would be spent, at times, watching Chloe fight for her life. I'll never forget in the early days when she was failure to thrive (not able to gain weight) and really sick and our pediatrician (who we LOVE) stood over her shaking his head and said "I'm really worried about her". We were too.

Countless trips to the ER and hospital stays, including open heart surgery at only 9 weeks (we waited as long as we could!), g-tube placement and REMOVAL (wooo hooo), and eye surgery; numberous procedures and labwork, including many sleep studies; nursing care, g-tube feeds and CPAP all filled our first year. There were literally times we weren't sure she would make it. But now, 3 years after she was born, we look back with amazement. . . pure and astonishing amazement, that she has grown into the thriving, wonderful little girl that she is today. And weeks from now she will board a school bus and venture out on her own and into the world of preschool, away from mommy and daddy and Xander and Sadie. Out into the big world. . . and she is READY. Happy Birthday Sweet Chloe. Happy Birthday!

Vacation Sorrow, Swimming and PTSD, and a Fever

Well, we’ve been enjoying a wonderful vacation in Maine with our family, albeit a little sad without my step-father Sam, who is ALWAYS missed, but especially on our trips to Maine. After a few days of feeling overwhelmingly sad, I’m managing now to focus less on his absence and celebrate in the spirit of his life. Not to mention Chloe’s 2 days away from celebrating her 3rd birthday in her birth state (Maine, where she arrived while we were on vacation!!!!), so I’m turning this frown upside down and learning how to enjoy being here ;)

Sam, Big Sam, Grandpa or "Bah-Pah" in Maine 2 years ago.

My mom Penny with the love of her life...


So one of our favorite adventures while up here is of course swimming in the lake. Chloe’s become quite the little water baby. She loves playing on the beach and playing around in the water. With a life jacket on we were enjoying some water time on her belly, blowing bubbles, when she inhaled a little water into her nose. She started to choke and panic and while remaining perfectly calm I reminded her to BREATHE. . . BREATHE CHLOE. . . BREATH. It seemed like FOREVER waiting for her to take in that breath, although I still remained calm because I saw how little water she took in and couldn’t imagine why she wasn’t breathing. She finally snorted out some water from her nose and then inhaled a great big breath of air. We returned to playing in the water and eventually returned to the beach. Her tongue was slightly bluish-purple, but she otherwise looked fine. She did get a little limp in my arms as I carried her back to the beach, but as I undid her lifejacket she bounced back to her “normal” self. She was totally fine and doing great, but I couldn’t stop thinking about how much the choking looked like when she used to choke as an infant when she had a small opening to her airway and would choke frequently on mucus plugs. As time went by I became more and more anxious that maybe she inhaled some water and was going to suffer from dry drowning (an uncommon but fatal condition where someone who has inhaled water into their lungs actually drowns within the first 24 hours of being out of the water because the water in their lungs breaks down the chemicals in the lungs). Even though I KNEW she was acting fine, I was anticipating spending the next 24 hours WATCHING her like a hawk. So to settle my own anxieties I called the pediatrician. If you don’t know my pediatrician, he is AWESOME!!!! He talked me down off the edge and even validated my sense of anxiety associated with her earlier choking episodes. “Of course, it’s like PTSD!” which I had already expressed to my family before making the call. I knew my extreme anxiety was totally related to “Post – Traumatic Stress Disorder” from when she was an infant. Thank GOODNESS I have a pediatrician who validates my feelings and emotions as a parent while still reassuring me that my baby is going to be okay (and if not, he’s there to help). Although relaxed and feeling MUCH better later that night I dreamed she died and I can’t even begin to express the emotions I was experiencing. I honestly don’t know how others go on after the loss of a child, other than the fact that you have no choice. To my friends and family who have lost a child, my heart truly breaks and aches for you because it is absolutely an experience no parent should have to endure.

Finally, I round out this post with a fever. . . Chloe started running a fever after a rainy-day nap with mama today. Nothing too alarming – about 100.8 with a temporal thermometer. After an hour on Tylenol she was up to 102, but it slowly came down. She’s been lying around feeling poopy, but nothing too terrible. We’ll see what tomorrow brings, but let’s all hope she is healthy for her BIRTHDAY!!!!!



Oh, ONE MORE THING. . . 3 successful potty trips. :) wooo hoooo!!!! One time she even signed “potty”, I took her to the toilet and sat her there and she peed. Yeeeehhhhaaaaaa!!!!!!

Wait, one more “one more thing” – Stacey caught a beautiful bass today. The kids were all so excited! :) Congrats honey.


And by the way, for anyone who is wondering, we have people staying at our house watching it and our dog! ;)

Catching up PHEW!

Finally something to write about!!!! I’m definitely a summer blog slacker and I apologize if anyone comes here regularly looking for updates, but hopefully most of you are summer blog-reader slackers. :) So we had a big day a few Wednesdays ago, with Chloe’s 2nd PPT (Planning and Placement Team – I think that’s what it stands for anyway) and then her hearing test. Both went quite well. She’ll be going to the town inclusive preschool 4 mornings a week from 9-11:35. She’ll get 1 hour of speech, divided into 2 half hour sessions and 1 hour of occupational therapy, also divided into 2 half hour sessions. She is not currently scheduled to receive physical therapy but there is a plan in place to assess her for PT when she enters school in the fall. I’m really excited for her to start the program and think she’ll do GREAT! My only main concern is the first bus ride in and how confusing that will be for her, especially since she doesn’t have the language. It’s possible to drive her the first few days so she gets used to taking the bus HOME first, but that will all depend on my work situation (remember, I’m looking for a job). But all-in-all it was a successful meeting.

The hearing test was also a success, showing hearing in the normal to low normal range. We return in 6 months to see if they can get her to wear the headphones to tease out hearing in her individual ears. But aside from occasionally confusing similar sounding words, I have no concerns about her hearing. She hears even the slightest sounds!!!

The other day my mom and I took Chloe for her big speech eval with speech guru Lori Overland. She spent 2 hours assessing and working with Chloe. Sweet little Chloe worked her BUTT off!!!!! I was so proud of her! After working with her and speaking with me about her speech and speech history, Lori was fairly confident that Chloe has Apraxia. "Apraxia is a disorder in carrying out or learning complex movements that cannot be accounted for by elementary disturbance of strength, coordination, sensation, comprehension or attention." She told us in children with Down syndrome the outlook is fairly good and that although they struggle with developing speech (and it will take a LOT of work) once they get it, they “get it”. I have to read up more on this disorder, but I do know children with Ds with apraxia often don’t learn to speak until they are 5 or so. Any information anyone has would be greatly appreciated. :) *Chloe has since had her speech session with her Birth to Three Early Intervention Speech and Language Pathologist and she disagrees about the apraxia. Grrrr. Can’t we just agree??? Not sure what to make of it all now. . .

I can’t end this post without a quick mention of our recent trip to MT and ND. It was AWESOME!!! The kids were all great (minus Sadie getting sick with a 3-day fever and then Chloe getting sick with a 3-day fever and then my niece getting sick with strep, which Stacey and I then got, followed by Xander and low and behold, Chloe tested positive too, so we just assume that’s what Sadie had!!!!! PHEW). We had such a wonderful time with family and visiting the place where Stacey (AKA “daddy”) grew up! It was so awesome getting a chance to all be together as a family. It sucks being spread from CT to AK, but we have to try to make the best of it!

Okay, I better post this now, or I never will. . .
I've got more to say, but we'll save that for another time!!!

Smiles

Wedding Weekend Round 3 Pictures

Just look at that smile!!!!!


Trying to keep her from attacking him! She was actually quite gentle with him, minus a few occasional whacks. Notice the size similarity. She's 2 1/2 years and he's 6 months! Little girl / big boy!

I LOVE-A ME BIG BABY!

The monochromatic crew!

Beauties! My sis and MOB!

Wedding Weekend Round 2 Pictures

Cousins! (including the bride)


MY MOODLES!!!!

Pretty Sadie

Handsome Xander

Look at those flaming red cheeks!

Big smiles at her first wedding!

The only picture I have of the bride in her dress! It was too hard to snap pictures while chasing Chloe around!

Stud.

My cousin Jonny and Xander.

Jonny loves his Chloe.

The Nanas. My mom and my Nana.

Great Nana, Sadie and Xander.

Chloe in her dress.

Chloe hugging another little Chloe.

The newlyweds, Anne and Matt!