A Long Time Coming

This post, that is, has been a LONG TIME coming.  I originally wrote it back in July, but have had a difficult time posting it.  Not only because I don’t know how it’ll be received, but also because it’s a hard thing for me to admit to myself and deal with. . . accept, and move on.  But as I’ve sat on this post for months now, I finally think (THINK) now is the time.  Please know too, that part of my struggle with posting this lies in the perceptions that we want to convey to expectant and new parents who are truly blessed with a child with Down syndrome.  I don’t want to deter ANYONE from making that choice for life or from feeling they can’t do it, because I believe in my heart EVERYONE has the capability to love and raise a child with special needs if they just allow themselves to be open to a new and (mostly) wonderful world.  But at risk of, well, pissing some people off, I am posting this because 1) it is honest and I feel that is important for my readers and Chloe’s followers and 2) I think it’s OK to say it ISN’T wonderful ALL THE TIME.  There are struggles.  We would all be lying if we didn’t agree to that.  But in our experience, the lows can be real low, but the highs are what we LIVE FOR.  Because they’re amazing (the HIGHS).  Watching Chloe accomplish what should be the simplest task. . . hearing her laugh at her sister and brother. . . hearing her say her name for the first time, or Mama for that matter. . . seeing her touch the hearts of people who didn’t think they themselves could be touched. . . I could go on and on about the HIGHS and fortunately, the lows are much less frequent.  But they ARE present and this is one of those times, still sprinkled in with the highs, therefore preserving my sanity!   Anyway, here it goes:

TABOO - originally written July 28, 2012

No, not the game, but what I’m going to say.  I don’t ALWAYS LOVE Down syndrome.  To tell you the truth, this has come as a surprise to me.  I THOUGHT I did.  I mean, don’t get me wrong, I embrace it and LOVE LOVE LOVE Chloe for who she is, but I guess as she gets a little older (but doesn’t seem any older in some behaviors) I start to get frustrated.  And I guess instead of getting frustrated at Chloe, I get frustrated at Down syndrome.  I mean I can’t NOT like her. . . or maybe I can.  . . but instead of that, I don’t like the Ds.  Does this make sense?  Anyone???? 

Maybe I should be more specific.  Lately (HA! “lately” means for over a year now!) Chloe has been climbing on EVERYTHING.  And the older she gets the harder it gets, because she doesn’t stop doing the behavior, like “typical” kids would, she just gets better at it.  Now she can push the chairs where she wants them or reach things she couldn’t reach before and she’s smarter!  Outsmarting me most of the time.  I don’t know why I feel the need to keep saying it, but I LOVE Chloe (I mean, of course I do!!!!  She’s my child and just because she has a disability doesn’t mean I love her any less.  In fact if you asked my other kids they’d swear I love her MORE, which obviously isn’t true either. ) and it’s hard to admit that this is HARD.  It’s hard having a kid with disabilities.  I guess I’m afraid to say that to scare off anyone with a sweet baby or someone who doesn’t have a child with a disability because one thing I try to convey MOST of the time is the extreme joy and love that we do experience.  Even when things are hard, it’s usually (USUALLY) still filled with this sort of magic that only people who KNOW someone with a disability can understand.  But I also have to tell the truth and it isn’t ALWAYS magic.  It isn’t always laughter and smiles and triumph. 

The chunk of wood Chloe bit off the deck

Chloe's artwork

Notice the toothbrush on the toilet!

I want her to STOP trying to do somersaults on the porch table.  I want her to STOP throwing ALL her meals on the floor so that at almost 4 years old I’m to the point of having to hand-feed her again.  I want her to STOP getting things off the counter just so she can dump them on the floor.  I want her to STOP writing on every surface she knows she’s not supposed to every time she gets anywhere near a writing utensil (I swear it’s like she has Jedi powers and can mind-meld pens and pencils off the counter and into her hot little hands)!  I want her to STOP getting into EVERYTHING – the toilets, the dog water bowl, you name it. . .  I want her to STOP figuring out how to escape from the house so that I have to have her in my sights at all times or I have to panic wondering where she’s off to.  I just want her to STOP doing these things.  NOT stop being Chloe.  But then there’s always that question I ask myself, if she wasn’t doing all those things, would she BE CHLOE?  Would she still have all those other wonderful characteristics that make her so incredibly special that people follow her story and her life and see the magic in her without even meeting her?  How can I possibly HATE or even DISLIKE Down syndrome without feeling the same way about Chloe?  I mean I know SHE’S not “Down syndrome”, but it is so much a part of her.  It’s in every gene for goodness sakes.  And then, I spend the day at my favorite event of the entire year, the CT Down syndrome picnic, an event that obviously encompasses everything Down syndrome is about – a celebration of ALL its joys and wonders.  And most importantly the “family” that we feel so lucky to be a part of. 

I don’t know where this is headed.  I guess I just needed to get off my chest that sometimes I don’t love Down syndrome.  I always LOVE Chloe, obviously and I love the life we are getting to experience with her.  I guess it’s like I say as kids get older the hard gets harder, but the easy gets easier.  Having Chloe I’ve found, and I am only speaking for myself here, that having a child with a disability the hard is HARD, but the rewards are AMAZING.  And I couldn’t do the HARD without all the support of Chloe’s Crew. . . our “village” that keeps me going.

The Birthday Post

What can I say on this special day to bring true meaning to it?  How can I express the joy of being able to celebrate this and each birthday with Chloe?  It was a rough start.  Times we doubted her future.  Now WHAT it would be, but THAT it would be.  So when each birthday comes I find myself highly emotional.  Almost giddy at times, at the sheer thought of her presence.  And as she reaches each annual milestone, not only is she a year older and further along, but she’s a year STRONGER.  And this girl has more zest than anyone I know.  And talk about personality!  I think anyone who is blessed to know someone with Down syndrome knows a little something about their strong-willed vibrant personalities.  (Clearly NOT to say people with Ds are all alike, quite the contrary, but they do have some very special traits that they share, I just happen to think their sparkling personalities is one of them!)  I don’t want to go on and on about how great I think Chloe is. . . obviously, I’m her mom!  And those of you that follow this blog most likely agree and love her too.  I just wanted to give a little insight into the wonders of this day that rolls around once a year.  A reminder, if you will, not only of what she has overcome, but what she holds in her grasps for the future.  I have NO DOUBT whoever she becomes I will be amazed time and time again along the way and I HOPE you’ll continue to enjoy this journey with us.

Happy 4^th Birthday Ms. Chloe!

Love, your family and friends!

A Wish Come True

Chloe was granted a VERY special wish.  A playscape to call her own that she could use independently and that would grow with her as she grows.  Thanks to the wonderful and generous contribution through her Nana’s employers’ “Self Improvement Fund” at LeClairRyan and the obviously thoughtful gift from Chloe’s Nana to use her fund in this way, Chloe and her siblings now have an adaptable playscape.  They LOVE it so much and can’t wait to share it with their friends.  Enjoy our journey in pictures below:

Step 1: Reading directions!!!!! (And we're talking books and books of directions!)

The BEFORE shot

The Boxes

Ready for her new playscape!

Keeping busy while she waits. . .

Ready to build!

Day 1

Trying out the toddler swing.

Trying out the slide

I think she likes it!!!!

ALL DONE!!!!  Thanks to the help from Justin and Greg and lots of little helpers!

Father's Day

First to my husband, Stacey.  I hope you got to enjoy your special day.  Your family LOVES YOU VERY MUCH!!!!!!

Xander, Sadie and Chloe's gift to daddy.

Next, to my dad, I hope you have a wonderful father's day.  I love you very much.

Me and my dad on Cinco de Mayo

And Father's Day can't pass without thoughts of love and loss, for my step-father Sam and father-in-law Al. Both men played an important role in my life and my children's lives and I miss them dearly.

Bah-Pah with Sadie.

My step-dad Sam, AKA "Bah-Pah" by my kids

An old pic, but he was just so handsome!  We miss you Grandpa Al!

Lots of love in my heart and head for these men. 

Before we finish thought you might enjoy a little montage from our day at the RI Air Show yesterday.  Don't worry it's short and sweet. :)

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Everyone Should Have One!!!!

So you’ve probably assumed by the title that I’m talking about a child with Down syndrome and although I DO feel we are BLESSED to have Chloe, that’s not what I’m talking about today.  Actually, this post has little to do with Down syndrome or even Chloe, but rather it’s about ME this time. 

I just had THE MOST wonderfully relaxing experience and I wanted to share it with everyone.  Back in May for my birthday my mother gave me a gift certificate for either a massage or CranioSacral Therapy.  Since I have fibromyalgia as much as I LOVE massages they tend to feel GREAT at the time, but can leave me feeling sore or achy.  And the woman Terri Laggis at Wisteria Healing Arts Center in Madison had thought CranioSacral Therapy might be the way to go for me.  Boy was she ever right!!!!  It was THE MOST relaxing thing I’ve ever had done.  I suffer from depression and anxiety too and this therapy brought my body to a level of relaxation that I haven’t felt in a long time. 

So why am I writing about this?  Because many of you out there may have never heard of it, CranioSacral Therapy, and I wanted to share in a good thing.  So if you’re local I HIGHLY recommend Terri at Wisteria but if you’re not, look into it.  It’s well worth the money and effort.  I plan on going back again. . . and again. . . and again.

It’s a good day.

Okay, so I couldn’t end a post without a picture of Chloe.  Enjoy.

Rainbows

There’s something about a rainbow that gives me hope.  Last night while it was raining, yet the sun was shining off in the distance, we saw a beautiful full-sky rainbow.  Obviously the photograph doesn’t capture its natural beauty or its magic, but I wanted to give you an idea of what we saw.

Things around here have been pretty good, except for a very sick mother-in-law/grandma out in Montana.  But looking through the rain to the sun and out to the beautiful rainbow gives me strength and hope to KNOW she’s going to be okay.  A little time, LOTS of love and caring, and good positive mojo and prayer should get her through this tough time.  Something about that rainbow gives me hope. . .

Chloe had her 6-month well-visit last week.  Talk about magical!  Watching her strut into the doctor’s office with her monkey harness back-pack on with a sense of confidence that is newly surfacing in her was like a gift.  Smiling, greeting everyone, approaching the toys as if she OWNED them (not in a possessive way, but in an I-know-just-what-to-do-with-this-stuff way).  Then the doc came out and she greeted him with a BIG hello and smile and bounded into his office ready to go.  “Play” she signed and said.  The next 45-minutes to an hour were spent watching her captivate our wonderful pediatrician who sat next to her on the little kiddie chair when he was invited with a pat on the chair and snuggled with her when she crawled up into his lap.  We all sat cross-legged on the floor and Chloe beamed at her ability to do so and be a part of the “group”.  We discussed all the wonderful progress she’s made and of course covered the medical basics.  It was an all around fantastic visit.

Sadie is busy with school and reading and writing stories and poems.  She recently wrote a poem/bookmark for me that I just love called "Loveable":

My mother is a loveable person.

She is a diamond,
Shiny as can be.
She tucks me in my bed.
I look at her when she tucks me in bed
And think
“You are so loveable”.

When she isn’t being sweet and fun-loving, she’s a difficult spoiled little middle child who HATES her mother!!!!  LOL The ups and downs of being 6!  She is looking forward to summer and camps and vacations and most of all a visit from cousin Macy for Camp Mason-Mann.

Xander, with his handsome new haircut, is busy breaking hearts.  After a very swollen groin lymph node from an infection on his leg, he is now healthy and also looking forward to summer vacation.  He’ll be enjoying a variety of camps as well as some days just hanging around at home.  Maine is always a big hit with him and he can’t wait for Macy to come (they’re doing a CSI-type camp together in the mornings). 

Stacey and I are doing well, minus our worries about Stacey’s mom.  We both feel healthy (knock on wood) and strong and aren’t the “hot messes” we were a few months ago.  Stacey has just finished up his spring 6-day-work schedule and is enjoying some time with the family mixed with lots of yard work.  As for me, I’m just enjoying my family and life and getting ready for the summer.  My job is going well and I feel comfortable with my current work/family balance.  We have THE BEST nanny in the world, so that makes it that much better. 

So please direct your prayers for us towards Stacey’s mom in hopes of a speedy recovery.  We of course love her very much and want her better soon!!!!  We look so forward to our visit with her and hope she is well enough in time to visit us in the fall.

**Since writing this Xander whacked his thumb playing drums and took a trip to the ER for an XRay (which was negative), started getting bullied at school and Grandma Linda was delayed from being released from the hospital, but we're still all in good spirits and hopeful for a speedy recovery for Linda and a quick resolution to Xander's bullying. 

Peace and love to all our friends and family!

Sometimes I Wish

there wasn’t the Down syndrome label.  Don’t get me wrong, I’m not wishing away Down syndrome or even wishing that Chloe didn’t have “it”.  I love her just the way she is.  I truly deeply love her JUST THE WAY SHE IS.  But having this label creates these expectations.  Expectations of her. . . expectations of me. . . just expectations.  I mean I know everyone has expectations put on them, but I just don’t want there to be specific expectations of her BECAUSE she has Down syndrome.  What she’ll learn, HOW she’ll learn, WHO SHE’LL ACTUALLY BE.  And then the expectations on me. . . to be her advocate. . . to help her be the BEST she can be.  I mean I do that for all my kids, but there’s all this pressure with her because of the DOWN SYNDROME.  Sometimes. . . okay, a lot of the time. . . I just want her to be HER.  I don’t want to have to push her all the time.  I want to step back and see who she’s going to be.  I’m not saying I don’t want to provide her with therapies and services that will help her along, but I guess I’m just not one of those hard-core moms that feels I need to PUSH PUSH PUSH so she can reach her maximum potential.  Quite frankly I’m not like that with ANY of my kids.  Now I’m not saying there’s anything wrong with parents who do do that.  I’m just coming to the realization that that’s not me. 

But regardless about how I feel sometimes (a lot of the time), I’ll take the Down syndrome and its label because on the positive side I’ve met the most amazing people IN THE WORLD through this syndrome that my daughter happens to have and I know it gives us some sort of framework to work with when we’re trying to get her help.  I know kids who have “special needs” but don’t have a diagnosis have a much more difficult time, especially managing the school systems.  If the world would just accept people for who they are our “special” kids would really be seen as just that. . . special. . . instead of different or weird.  One can only hope that someday, the world will be more accepting.

Chloe meeting her "cousin" William!  She LOVES HIM!

The Escape Artist

Ut oh. . . we're in trouble. . .



 

Happy Hearts

Chloe had her annual heart evaluation appointment on Monday and after 2 hours we got the good news that she is doing GREAT! Her heart looks fabulous.  She still has a narrowing of her aortic arch, but that doesn’t seem to be causing any problems and she also still has a “leaky valve” and will continue to take medication for that. But other than that her ticker is working just fine and we’ve got some happy hearts in this household!!! She’s reached 25lbs finally. Our little peanut is growing! At 3 ½ years old she’s fitting into 2T clothes. Not too bad. So the mystery of her cold foot / warm foot remains unanswered and probably will go unanswered (Chloe being Chloe), but the heart doc recommended a visit to a rheumatologist at Yale. Not sure what our pedi will say about that, so we’ll see. Maybe we’ll give it more time to see if it happens more. Heart is working fine so I’m feeling much more relaxed. Glad to get that appointment out of the way. As for the rest of the gang, we’ve slowly recovered from our various illnesses and seem to be back to “normal” – whatever that is (although since writing this first draft, I’ve developed yet another cold). We are ready for spring. . . bring it!

Here's a video of Chloe "reading" a book.  She obviously isn't actually reading, but the highlight of the video is her using word approximations and signs together.  You go girl!!!!

Chloe Being Chloe

Chloe likes to keep me on my toes. She likes to make me worry. Okay, maybe she doesn’t actually LIKE it, but that’s what she does anyway. So what’s she been up to as of late? First, let’s start with her “cold foot”. She continues to have an occasional cold foot, leaving the docs stumped because it’s not consistently cold and she doesn’t seem to have any pain. But the cardiologist (heart doc) moved up her echocardiogram (heart ultrasound) from April 30th to March 5th so we can rule out cardiac issues. We’re all feeling fairly confident that it’s not a heart issue, but that little nag of worry still hides in MY heart.

The other drama came with a bout of the stomach bug last week. She got it Monday night and each time she vomited (which was about every 15 minutes for 2 hours) her tongue turned a purplish-blue color. It was startling enough that I called the pedi. He didn’t have an answer as to why that was happening because she didn’t appear in distress and the color around her mouth was fine. Probably just Chloe being Chloe. He ordered some Zofran to stop the vomiting and she eventually calmed down. Over the next few days she continued to have these very purplish-blue feet and hands and just generally didn’t look good. Another call to the pedi and it was determined that she wasn’t regulating her temperature due to the virus. Nothing to be alarmed about. Just Chloe being Chloe.

Everyone keeps telling me that her plumbing (aka her heart) is fixed, but I can’t help but always wonder if there isn’t something ELSE going on. I can’t help but remember when she was 2 weeks old and went into severe congestive heart failure for unexplained reasons. “It’s NOT related to her AVSD”, they told me. “We don’t know what it is”. I knew those words would one day come back to haunt my memories. Do I think this is that? Absolutely NOT. She is NOT in any distress. NO breathing issues of any kind (aside from a blue tongue when vomiting). But I guess I’m just predisposed to worry about her now. Despite all my worrying, it’s more likely than not, that it’s just Chloe being Chloe, but I’ll be relieved to hear all looks good at her annual cardio appointment next Monday! Keep her in your thoughts and prayers, if you don’t mind, for some resolution. As always it’s greatly appreciated.

As for the rest of the crew, a quick update: Sadie had the stomach bug last week too, but is recovered and back to her old self. She’s finally decided on an “activity” all her own – piano lessons. I’ll be looking into that soon. Xander played in the Squirt Norris Division State Hockey Tournament this past weekend and his team went into the championship game on Sunday undefeated. They lost 5-4 in a well-played nail-biter. Turns out Xander was playing with the stomach bug and promptly got off the ice and vomited all over! YIKES! He’s been in bed recovering since then. Oh and a trip to the dentist showed he’s grinding his teeth and is potentially a cause of his headaches. Stacey finally had a sleep study and found he has sleep apnea. Hopefully once he gets on the CPAP he’ll start feeling better. As for me, I got the stomach bug last week too and took some time to recover, but am now feeling much better. I have my sleep consult tomorrow morning. Hopefully I’ll get some answers. :) I think that about covers it! Until next time. . .

Bad Cold and a Mysteriously Cold Foot

Our little Ms. has a terrible cold.

She’s had it now for over a week. Runny, gooky nose and cough. We got the vaporizer running at night and I’m using the saline spray, which she is surprisingly good about. She started out with a fever and cough, but that only lasted about 24 hours. And then the full-blown cold took over. But I think slowly she’s getting better. She still plays with her usual zest. The only WEIRD thing that’s been going on is she’s been waking with one ICE COLD foot and one warm foot. It’s very weird. She usually has TWO ice cold feet when she wakes in the morning, but 3x now it’s been just one foot. And it’s not consistent. 1x was about a week ago and then the other 2x were yesterday and the day before. I forgot which foot it was the first two times so I’m waiting for it to happen again to determine if it’s the same foot (the RIGHT one). I spoke to her cardiologist today (after waiting ALL DAY yesterday for NO CALL back) who said it didn’t sound like her heart, but that she would be willing to move up her April 30th annual appointment to mid-March. They want to look at her aortic arch. She doubts that’s the cause though because she thinks it would be cold on both sides and all the time. She also said if it IS occurring on the same side each time that she thinks our pedi should order a Doppler ultrasound to check her leg vasculature. I’ve got a call into him next. . . so stay continued. It’s probably one of those weird things that will turn into being nothing. Thank goodness she’s otherwise acting “normal” LOL because otherwise I’d be more worried!

IPad and Other Wonderful Things

.

I was initially going to title this post “A Hot Mess” and talk about what a mess I’ve been with a potential sleep disorder, depression and anxiety plaguing me, but honestly, who wants to hear about that?? I have so many good things to write about and I’ve been so bogged down with my own . . . shall we say “set-backs” that I haven’t been able to muster the time or energy to properly update all of Chloe’s progress and good news. So here it is. .

Back in December Chloe was awarded a grant for an IPad. She’s 3 years old and is still fairly “non-verbal”, communicating primarily with some signs and word approximations. But although she has around 100 different signs, she wasn’t really using them or her word approximations to communicate effectively. So coincidence or not, once she got her IPad her language and communication skills, including signing, started to explode. Maybe it’s the more time I (and her AWESOME nanny) specifically spend with her since we use it together, or that school just happened to “click” for her around the same time. . . whatever the case is, she got the IPad and her communication started to soar. It’s so wonderful to watch her playing with it and repeating back the various words and imitating sounds. She still has a LONG way to go and struggles with certain sounds/words (like “Rudy” our cat, or “Chloe”), but what a gift to see her pride in her accomplishments.

Believe it or not, the other wonderful thing Chloe’s got going on is her health. Wow, I never thought I’d find myself saying THAT!!!! She’s doing so great. Eye doc, endocrinologist (thyroid), and pedi have all given her clean bills of health! This includes an all-clear neck x-ray (there is the potential for a small percentage of kids with Ds to have weak necks that can put them at risk)! She was also negative for Celiac Disease! We’ve got her cardiology appointment coming up in April, which I completely expect to be nothing but excellent. And I think that covers it. I mean, minus of course, a few colds and tummy troubles, which she was able to fight all on her own.

Chloe had her first school play-date a few weekends ago. She was invited to a “typical peer’s” house (that always cracks me up. . . what the hell does that mean anyway???) for a wonderful afternoon. I stayed with her of course, but she had a blast. I had maybe one fleeting moment of thinking, gosh it would be so different if Chloe didn’t have Ds. . . but then I remembered that Chloe wouldn’t be Chloe and I love her for who she is! Even though she had the attention span of a flea, she clearly brought joy to her friend and her friend’s family. They were thoroughly enjoying her. Yes, I know we are lucky to have found such supportive friends, and I’m sure there will be days when we are faced with judgment, but for today, things are good.

I can’t end without an update on my other munchkins (haa haa, they’ll probably kill me for calling them that!!!!) Xander celebrated his 11th birthday last week. 11 years is so hard to believe. Doesn’t it go by so fast???? He’s such an amazing kid with a wonderful sense of humor and maturity about him that ironically gets him in trouble. He’s enjoying his first year of offense in hockey and adjusting to being a middle schooler (our district has a lower middle for 5th and 6th and an upper middle for 7th and 8th). He’s an amazing big brother to BOTH Chloe and Sadie, although of course they all have their moments. Xander’s also been struggling with headaches and nausea for about a month now, but we’re working on getting to the bottom of it. . . we THINK they might be “stress headaches”. Stay tuned. . .

As for Sadie. . . well what can one even say about her? She’s a true girl in every sense of the word. She loves make-up and clothes and shoes and pretend play. She wants to be a teacher and LOVES first grade. She isn’t interested in “signing up” for anything. She’s definitely a homebody and enjoys doing stuff here. She’s also a great sister, although she certainly saves all her “challenging behaviors” for us at home!

I think that covers it. You don’t want to hear about Stacey. . . he’s a “hot mess” too. LOL Summer can’t get here soon enough (Spring is his busy time so we’re waiting for SUMMER!) But all-in-all we’re holding our own.