Our Elopement Safety Plan

I've been going back and forth on Facebook trying to explain in short answers how we TRY to keep Chloe safe from bolting, eloping, running, escaping, etc., etc.  So I thought I'd make it easier on everyone and lay out our Current Chloe Safety Plan.

First and foremost, we are VERY lucky to live in a town that has just implemented the Project Lifesaver Program http://www.projectlifesaver.org/ which has outfitted 6-year-old daughter with Down syndrome, Chloe, with a radio transmitter bracelet which she wears on her ankle.  IF she were to get out AND get lost the police and the first responders in our town are trained to respond IMMEDIATELY and can locate her from up to a mile away.  As I mentioned, it is a radio transmitter so it works when GPS signals might fail (like in the woods, or in water, God forbid!)  Chloe HATES wearing bracelets, but the officer was wonderful about introducing it to her and she wears it without a problem.  It never comes off - she wears it in the tub and swimming, as it's fully waterproof.  She can decorate it if she wants, but she prefers to sort of pretend it isn't there.  She doesn't want any attention drawn to it.  It's just there.  (Or "isn't" in her mind).  Here's a pic from the my last post "Reality Bites" which I also recommend, as it talks about the scary reality of having a bolter! http://dancingthroughthetulips.blogspot.com/2014/07/reality-bites.html  I will also be looking into adding the PAL system through Project Lifesaver which I believe is a GPS system.  It would be nice to have both systems in place in case one doesn't work as well as the other.  

Next in our plan was to work our state Department of Developmental Services and our local school through Chloe's IEP.  We have 2 BCBA's on board (Board Certified Behavior Analyst) one from DDS and one from the school district.  Together we have created an additional safety plan including the following:

• focus on teaching Chloe the verbal cue "STOP!"  This cannot be done with a game because that confuses Chloe who already thinks running off IS a game.  It is very serious and when she hears "STOP!" she must learn to STOP immediately without hesitation.  We also discussed using a different word, but determined "stop" is the word everyone will know (including strangers) so we want her to respond to anyone's STOP
• focus on increasing SAFETY AWARENESS - including but not limited to - stopping at curbs and stop signs; learning full name, address and phone; stopping and listening to adults
• the addition of visual cues at home - Chloe likes to read signs so we have a sign by each exterior door with simple instructions and coinciding pictures to give her cues.  A large plain "STOP" sign can also be used
• 
• we have installed hooks and latches up out of her reach on all exterior doors
• the main exit door has a very loud door chime on it which we can hear throughout the house - we are all VERY cued into it so if we hear it we immediately take a role call and do a status check of Chloe's exact whereabouts
• When in public we TRY to use a stroller or monkey backpack, but now that she's 6 she is much more resistant to these things and prefers some independence.   We try to double team her, keep her brightly clothed and don't ever let her get more than a step ahead.
• On vacations or away from home for extended periods we "assign" Chloe times so we KNOW who is responsible for that time period and make a clear designation if we are to reassign responsibility.  That way there is no confusion about who should be watching her.  

I think that covers most everything we've got in place right now.  Oh, we have looked into a service dog as well, however with our family already having 2 dogs we think it would be a little too much for us now, however it is never completely ruled out.  It's my understanding they can be trained to stay with your child at all times (possibly herd your child home or stay with them until they are found and much more!)  Please feel free to leave a comment with questions.  Good luck out there to all my fellow escapee parents.

~AMY

The Gatekeeper ;)

Reality Bites

Remember that 1990’s movie about love and relationships?  The trials and tribulations of older adolescence.  It seems life was so simple then.  Not to mention with an awesome soundtrack!  Now, not to say adolescence is simple, by any means, but I guess compared to the realities of adulthood and PARENTHOOD, life does seem a bit more. . . complicated now.  Where is this all coming from, you might be wondering.  Well, in short, life with Chloe.  That sounds negative and I don’t mean it that way, so let me explain.

A few weeks ago, Chloe was outfitted with a new radio transmitter registered with the local police department as part of the Project Lifesaver program.  It’s been in the works for weeks now, probably more like months, but finally, she is donning her newest accessory – a waterproof bracelet/anklet worn around her ankle that contains a radio transmitter in the event she gets lost.  That’s where the reality part comes in.  I posted a picture of Chloe’s new jewelry on Facebook and was showered with “wow’s” and “that’s great” and “what a relief”.  But that wasn’t the REALITY of it.  The reality of it is that this is just a small tiny Band-Aid on the bigger problem.  Chloe is an escape artist.  AND a runner.  And Chloe has little to no sense of road safety or water safety.  And being outfitted with this new transmitter not only made me realize the reality of her escaping, but also the realization of the limitations of what this small device can provide.  And that, my friends, is quite daunting.  The REALITY is if she gets out she could die.  Period.  Before we even have a chance to call the police to search for her she could be hit by a car on our very busy street or drown in water she eagerly wants to jump into.  This is our reality and quite frankly, it bites.

I don’t mean to be such a downer.  I like my posts to be upbeat and motivating, because that’s generally how I feel when I’m thinking of Chloe.  But there is another side to that optimistic side of things.  The other day at work I was telling someone about my three children and as usual I said “and then I have a 5 year old girl who has Down syndrome”.  For the first time in a LONG time I got a “gasped” response, followed by “oh no’s” and “I’m so sorry!”  “That’s so awful” and on and on.  “No! No!” I assured her.  “We love her!  She is true delight!  We feel blessed to have her and couldn’t imagine her any other way” clearly reassuring her it would be okay, as if I were reassuring a new mother who had just received the news herself.  And I did mean EVERY SINGLE WORD OF IT!  We can’t imagine our lives without Chloe or who Chloe would be without Down syndrome.  We embrace her for who she is.  We celebrate her. 

But that doesn’t change the reality that EVERY SINGLE DAY we live with the added fear that we could lose her.  All parents know this feeling.  When you experience the love such as that of a parent for a child you can’t help but fear even the unrealistic.  The unreasonable.  But for us, that fear is a little more real.  The chances that something horribly tragic could happen are higher with our special kiddos who run, misunderstand danger, or who have special medical needs.  And some days it gets me.  It holds onto me and squeezes me until my breath is taken.  And I gasp, almost as if there is no air left in the world, only to realize there is.  Today is NOT the day we will lose Chloe for good, and hopefully that day will not come for a very long long long time.

If you’re wondering how we get up each day and live in this shroud of fear and doubt.  Well, the answer is because we have to.  In order to give all our kids the lives they deserve we must let some of the realities of what can be and live in the moment.  The “I want to dance barefoot in the rain” moment that reminds us that we must LIVE while we can for someday, as with all of us, we will lose that luxury and when we do we want to be able to say, it was a good life that we lived afterall.

Celebrating World Down Syndrome Day 2014

First off I HAVE to share this video with everyone who knows Chloe or knows OF Chloe.  It made me cry and I think it’s amazing!

So this blog post will be dedicated to Chloe and her biggest cheerleaders Xander and Sadie, in honor of WDSD which takes place on March 21^st every year.  Get it???? 3/21. . . . wait for it. . .  Trisomy 21 the official medical term for Down syndrome.  I know, cute right?  Anyway, let’s talk kids.  Mine, of course, cause it’s my blog (hee hee).  I haven’t done a general update in awhile so here goes:

CHLOE has been a busy little beaver.  Which in turn means so have the rest of us!  But what else is new!  I was shocked at my most recent teacher meeting when she showed me the book Chloe was reading.  Yes, I said it R-E-A-D-I-N-G!  Not “reading” like I thought, where she points her fingers at words and talks along in gibberish as she goes, but actual word recognition reading!  wooo hooooo!  Now that’s a milestone I wasn’t even quite expecting yet.  What a pleasant surprise.  She’s also talking in FULL, sometimes long sentences!  Not always, but every now and then she comes out with a wowzer!  Like “Mom, can you stop doing that?!”  (probably when I’m singing or dancing).  She’s got a new i-Pad that we’ll be using to help her communicate because although she can speak in full sentences at times, at other times the words just escape her and frustration bleeds into her sweet little eyes.    Chloe’s also toilet training and has been for what seems like months!  She’s so darn close.  Close, but yet so far. . .  Chloe loves to sing and dance with Sadie, play floor hockey with Xander, watch movies and act them out, play with her Playmobil people and her cars.  She is full of spunk and zest, but a full on love.  I find if I’m getting frustrated with her if I can get her to laugh, we’ll all be okay!  Lastly, she’s been busy doing gymnastics (or should I say Max her shadow has been busy chasing her during gymnastics!)  I think that covers Chloe in a nut shell.  Oh, I forgot the medical update. . . we’re trying to wean her off her thyroid meds and heart meds and could potentially have her MED FREE by the end of April.  I get VERY emotional when I think about this as it seem like the end of a very medically dominated era.  I’ll keep y’all posted.

AND as if all this isn’t enough, Chloe has taken to RUNNING out of the house.  We’ve gone into lock down, but mistakes happen and she has gotten out and gone missing, although only briefly, several times.  One time she was seen bolting out into our busy street without even glancing for cars or hesitating.  We were sooooo lucky!!!!  We will be putting this in the forefront now that the warm weather is returning and will be working with our local police department to get her hooked up with Project Lifesaver, a tracking program for people with disabilities.  We’re also working with the Department of Disability Services and the school to come up with some behavior plans to help prevent bolting.  It’s a very scary prospect!

SADIE SADIE SADIE.  What can one say about Sadie.  The poor middle child, sandwiched between two very high maintenance siblings.  And a drama queen in her own right.  Well, she’s been struggling a little with her place and has expressed the feelings of being left out so we’ve made a real effort to give her some special extra attention, her school is hooking her up with a mentor and I’m enrolling her in a program called SibShops, just for siblings of kids with disabilities.  She’s looking forward to both!  She’s also taking gymnastics with Chloe, doing well in school and growing like a weed!  She LOVES to play school, experiment, dance and be silly and do “fashion”.  I fear the day when we can fit in the same clothes!  Although I guess that means I get to steal from her closet too ;)  Sadie’s had two bouts of strep but otherwise is healthy.  No specialists for her.  She is such a great sister to both Chloe and Xander. 

XANDER MAN!  Last but not least.  He’s 13.  Yes, 5 years from 18. . . 3 years from being able to drive.  1 ½ years from high school.  And I know all this because he’s been sure to point it out to me!  He loves toying with me and reminding me he is growing up!  AND  UP AND UP.  Every week he likes to point out how far above my head he’s gotten.  Last count 5’5” and growing.  He’s a beanpole though.  95lbs soaking wet.  He’s definitely working to find himself out, but he, like his other sibs, is a strong part of the family.  He’s working VERY hard in school and hockey and LOVES playing video games.  He’s still interested in medicine (has been since he was 2), but also takes some interest in the military.  He’s a family guy for sure, heading down to VA to visit his Great Nana who he loves very much.

Stacey and I are doing well.  22 years together and 19 years married.  wowzers!  And still going strong.  He’s gearing up for the spring season at work and I’m about to take on an increased caseload at my job (hence the early WDSD post).  We’re ready for spring for sure!  It’s been a LONG and stressful winter.

Confessions of a Playdate Host and A Big Thump and a Cry!

First we'll start with the playdate. I scheduled to have a playdate here at my house today. I was expecting 7 moms and their kids ranging in age from 4 months - 4 years (not counting the -0 -baby-in-belly). Leading up to the big day, all looked good. A forecast of beautiful weather meant we'd be able to play outside and have a picture perfect picnic. But then, days before the "big day" the forecast changed and each hour it seemed, got gloomier and gloomier. Now I tried not to panic, but I have to admit, I was actually a little stressed out about having everyone in the house! Well wouldn't you know it, it turned out to be one of the most wonderful playgroups. I have to say, I know some of the neatest women out there! I feel so lucky to have had such a great group here to play. It's days like this when I truly feel lucky. Granted, I DID have to stay on top of Chloe to keep her from "ROUGH LOVING" all the other little ones, but for the most part, even she did pretty well. And sorry I don't have pictures to share. I didn't even have time to get out my camera because I was on top of Chloe, but you can use your imagination for all the cuteness (Hess truck playing, baby caring, lunchtime together, piano playing and ABC sing-a-longs. . . you get the picture!) These gals even helped clean up. LOVE IT! Now one of these times I'll learn to be a better hostess and put out food and snacks, but I figured for my first one just having my house in order would have to be enough LOL.

Now for the BIG THUMP! After everyone left I put Chloe up in her crib for her nap - after some books, of course ;) I came back downstairs to clean and after a little while I heard a loud THUMP on the ceiling above me. I paused for a moment, as she will often bang the side of her crib quite loudly, then sprang to my feet as she let out one of those "I'm hurt" cries! I ran up the stairs, taking several steps at a time and bound into her room to find her standing there, OUTSIDE of her crib. She had put the pillow in the corner and either flipped or crawled out. She cried for a few minutes, but I didn't see any noticeable boo-boos and she honestly calmed down fairly quickly. I tried rocking her to sleep, but after no success, I simply removed the pillow and lay her back down. She is now resting peacefully. Phew. I tihnk it's time for ME to take a nap.

A Lot on My Mind

Boy, do I have a lot on my mind. I’m not even sure where to begin or what if any of this is “blog worthy”, but as I use this blog as a sort of release, I’m going to write anyway. So let’s start with our upcoming big trip. Next Friday, a week from today, I’m flying with my mom and the three kids to Minneapolis, MN for a wedding (and as for my disclosing to the world when we’ll be away, my hubs isn’t coming and our big mean dog ;) will be home guarding our house, so I’m not worried). Anyway, so we’re having a family wedding next weekend and a good ol’ family gathering so OF COURSE I’m taking the kids, but then it dawned on me. . . WHAT WAS I THINKING??? I’m TERRIFIED. I mean, let’s not even get into the whole anxiety of flying (I just thought of THAT part of the trip – YIKES), but I’m thinking more of traveling with my wonderfully exuberant little two-year-old! Don’t get me wrong. I LOVE her to death! She brings a joy I hadn’t even known existed. But I’m completely stressed about traveling with her. I picture her screaming in her car seat – no, not crying, but literally SCREAMING on the plane. And climbing the walls of the hotel. Shrieking during the ceremony because I won’t let her charge the alter. . . pulling plates off the table at the reception. . . destroying my aunt’s house. . . running every minute of every day that we’re down there. That’s what I picture. And I have to admit the worst part of all this is ME!!! I’m the one who doesn’t do well with change. I like my routine. I like to know she will have a place to play while I take a few minutes and (breath) check things on my computer or that she’ll take a nap in her crib while I (breath) shower and clean up. AACK. I don’t want to sound complainy at all or like I take my dear sweet Ms. Chloe for granted. I appreciate that there are those who have lost their precious little ones and would sacrifice anything to have MY problems. But nonetheless, I still feel the stress (along with the guilt) of traveling with my very “special” little girl.*

*Before I go on, it’s important for any family members who might be reading this to know that I am SOOOO EXCITED for the wedding and for everyone to share in the joy that is CHLOE. It’s just the logistics that are freaking me out!

Okay, so as if I haven’t said enough already… my other big stressor is the old cheery job-search. I don’t know WHAT to do with myself. I’ve worked in Early Childhood and Early Intervention for 20+ years now and that’s where my passion lies, but I don’t know what to do now that it’s time for me to return to work. I haven’t “worked for someone else” in over 10 years. I’ve opened and run 3 different businesses and loved doing it. My last two I ran out of the home and would so love to do again, but we moved and our new location is not conducive to running a school out of. And I’m pretty sure it’s too expensive to do it out of the home. Too many expenses. And honestly, as much as I want something outside of Chloe and my other two kids, it’s hard to take that step away. I know, I shouldn’t think of it as taking a step AWAY, but that’s how it feels. I think this fall is a good time because Chloe will be starting preschool, but then I worry it won’t be a good time, because she’ll “just” be starting. I’m hoping if I put my feelers out there that things might just fall into place. I really love running toddler programs that are fully inclusive. But my big dream is to have a fully inclusive family play center with drop-in play as well as high quality babysitting and toddler / preschool programs. Someday hopefully I’ll find my way back to my dream. Too bad it always takes money. . .

Phew. I think that’s enough delving into my psyche for one day. I’ll end this post saying how thankful I am that we’re all healthy and for the most part doing well. Despite the stress that comes along with raising a child with special needs (traveling with and the financial strain caused as a result) life couldn’t be any more beautiful. Of course we feel as though we could “do without” these challenges, but lessons will be learned, new joys will show themselves and we WILL prevail in the end. Thanks for bearing with me in this long picture-less post. I promise to share some photos soon (by the way, I might be getting a new camera for my birthday so if anyone has any advice for a new camera let me know).

A Trifecta

Chloe's got a trifecta! A nasty toe nail infection, a cold and teething. Wait, if you throw in the persistent rash on her face and butt, what does make it then???? LOL Anyway, we went to the doc yesterday and he gave her some oral antibiotics for the toe and recommended 2ce daily soaking of it in hopes of avoiding a trip to the podiatrist where they would have to dig out the nail (ewwww). Hopefully we can avoid that! I'm including a picture - don't look at it if you're squeamish. Chloe remains in unbelievably good spirits considering she looks like a mess. She's a trooper.

Sweet and Innocent??? And a Spring Photo Shoot

She's sweet and innocent right????


I mean just look at her with her sister, with that sweet smile. . .


Thank you sweetheart. . .


And her too. Sweet, young innocence. . .


DON'T BE FOOLED!!!! If you look closely at Sadie's left cheek you'll see the bite marks of a NOT so innocent and/or sweet 2 1/2 year old. Don't get me wrong. They're both cute and all, but boy do they have their moments!!!!!! And Chloe lately, well, not just lately, but for what seems like forever has been into EVERYTHING. And I mean EVERYTHING. And not just into it all but ON it all. She's been climbing since before she could walk and now her favorite places to be are on top of things, like the kitchen and dining room tables or the piano. . . I'm getting to my wits end and don't know if there is a light at the end of the tunnel or if this is just how Chloe's going to be. A wild girl. When it comes to child development, I consider myself fairly savvy. I get how it works and for the most part hang on to the old saying "this too shall pass". But with Chloe I've been waiting and waiting and it ain't passin'! I know I WANTED her to walk and climb, but REALLY??? On everything??? This girls got no safety awareness. She would dangle from the kitchen light fixture if I let her stand on the table long enough (yes, I said "STAND on the table"). Like lightening she pushes the chair over, climbs up on the table and quickly stands up, sometimes rocking the table gently back and forth, just to see if she can actually give me a heart attack before I can reach her. I know she's trying to kill me. One way or other, she's trying to do me in. And she's gotten pretty close a few times. So if anyone has any encouraging words of advice, please let me know. We have baby proofed a big part of the house, we just can't seem to get the kitchen to be a safe place, so we tend to stay out of there. But I'm tired and need some assemblance of hope that this WILL pass or that I'll find the strength and wisdom to beat her at her own game. ;)

Cardio Update

After being there for what seemed like FOREVER because there was a "spot" on her echo (turns out it's something that's always been there and hasn't changed at all over the last year, but a new tech made note of it, so the cardiologist had to review the echo more closely) we got the great news that Chloe continues to ROCK her repaired heart. She still has moderate valve regurge so she'll continue on daily meds, but as expected we can switch to 2ce a day (from 3x per day). It's still a compound (meaning we have to drive 30 minutes to get it filled), but we're going to look into mail order. Hopefully we'll get it all worked out. If not, whatever. We'll just have to go to our old town once a month ;) It's worth it.

One appointment down. . . 7 to go (counting therapy!)

A Little Bit of Spring

So we got out and enjoyed some sunshine yesterday. If you look closely at Chloe's face you can see just how much she enjoys being outside. And now that she's walking I don't mind taking her out so much!!! Xander loves to go out and play lacrosse or baseball and Sadie just loves to run around! Gotta love spring time and the chance for more fresh air!

Some pics. . .

Cooking with Sadie. . .

My BIG kids, Sadie and Xander!

Enjoying Grandma Linda's goulash, made by daddy. YUM!!! Remember that girl with the g-tube who wouldn't eat???? For all our friends out there with Ds kiddos on g-tubes, it WILL come! Look what you have to look forward to! ;)

Time for a goodnight story with big brother Xander. . .

New Mission

I have a new mission in life. . .


. . . to get Chloe to keep a barrett in her hair!!!!!


And just wanted to share this cute picture of Sadie. :)

Guess who. . .

has a cold!!!! AGAIN. Will you look at that RED FACE! Poor baby.

We've Been Busy

Last week was Chloe's appointment with her feeding OT. Tammy was so impressed with Ms. Chloe's oromotor development. She said judging her on her oromotor skills she would never guess that she is tube fed even as much as she is (which is about 40% of her daily intake now - gooooo Chloe!!!!). I was just thrilled to hear all this good news about how Chloe is doing! I can get so frustrated with how far we have to go still that I can sometimes lose sight of how far she has come!

We also had Chloe's IFSP (Individualized Family Service Plan). That's the service planning meeting to determine what services Chloe "needs". This was a big one even though it wasn't her annual because we are moving to a new town this summer and will be getting all new therapists, so we wanted to make sure her current therapists had a chance to make goals for her and that we had a transition plan in place. They used a new assessment tool that focused on her daily routines and how well she meets my expectations for each routine and then how satisfied I am with each routine. I found the tool to be quite useful in directing our goal setting and figuring out what are some things I would like to see change. It clearly gave me a strong voice in determining her goals.

Lately, I've really been having a hard time with Chloe's inability to walk, as the weather is nice and I'm really having trouble with her crawling outside, and it was so nice to have a table full of sympathy at her IFSP. I get tired of hearing "oh, she'll walk". I KNOW she WILL walk, it's just hard that she's not walking now. That may sound harsh, but that's my reality. I know that in many ways those of us who are blessed with a child with Down syndrome get to enjoy having our "babies" longer, but that has it's challenges as well. For me, it's been a long time to have a crawler. Don't get me wrong, please! I LOVE Chloe for who she is and all that she can do. This is just my struggle right now and simply having a group of professionals hear me out and sympathize with me was empowering and validating. So onward and upward - I can stop dwelling on it and turn my focus to helping her reach her goals, as SHE is ready!

Another big piece of our meeting focused on feeding. Since Chloe had the stomach bug again she stopped taking a bottle all together for a few days. I was very discouraged and worried we had hit a wall. But just as I was losing hope, she picked up the pace again and is actually drinking more then she was before! GO CHLOE!!! She takes 18-24 ounces by mouth per day now. I think I need to say it again. . . GO CHLOE!

Last but not least we had her ENT (Ear, Nose and Throat) appointment on monday. A hearing test showed that she had fluid in her ears and although her hearing is "fine" docs don't like to let children with developmental and particularly speech delays suffer from ANY hearing loss whatsoever as that will have an adverse effect on further speech development. So they take this very seriously. Fortunately, few ear infections and little to no hearing loss means we can "wait and see". So no tubes for now!!! Wooooo-hooooo! She'll go again in September for a hearing test followed by an immediate ENT appointment for the most consistent care. Have I mentioned we have the best ENT EVER!!!! :) Dr. Baum ROCKS!

So we've been busy, but a good busy. Chloe's the hardest worker that I know. I've got a video to post soon. Until then. . .smiles :)

Chloe's Amazing First Year

Don't forget to scroll to the bottom of the page and pause the music. Enjoy.

Make video montages at www.OneTrueMedia.com

Sick House

Boy, that's almost putting it mildly. To make a long story short, it started Friday and ended. . . well. . . I hope tomorrow, with 3 kids and 3 adults all with the stomach bug. The 3 kids were all sick at the same time! YIKES. MOST of us are feeling better, so now it's just a matter of getting back to full strength. It'll come.

And through it all I couldn't get Sweet Ella Grace out of my mind. Wondering what it was like for her to be sick and how she was feeling. Was she feeling sick yet? What was her mom feeling? I couldn't help but think of them as I held sweet Sadie's hair back as she threw up for the ump-teenth time and cried "I just can't take it anymore". All the while as I comforted her, knowing that she'd be better in a day or two, I couldn't get Ella out of my mind. I want to wisk out there and make it all better. I want them to NOT be dealing with this. But I digress and these negative thoughts aren't helping anyone. It's time to turn on the positive mojo.

A few years back I started a tradition in my family where every night at dinner time we would think of different people who were having struggles in their lives, say their names and maybe even write their names on a candle, then we'd go around the table and tell jokes and laugh until we couldn't laugh anymore. That way while we were thinking of people our positive happy thoughts could span the universe and hopefully reach them. My kids still sit down at the table and say "Let's think of people and do jokes". I think it's time to sit back down at the table together, think of some special people who need some positive energy (like Sweet Ella, wonderful little Jax, and beautiful brave Zoey), and let our laughter heal.

Into the Light

I’m not even really sure where to begin, but I thought it was important that I write a little bit about what’s been going on with me for the past year. I have somewhat recently started my ascent out of a deep dark place – depression. Last spring after experiencing some sort of virus that was complicated by my fibromyalgia I suffered some EXTREME fatigue. After weeks of wondering how I could possibly take care of my children I finally broke down. This accumulation of anxiety and stress lent itself to 4 days in bed, nurtured and cared for by my wonderful husband and mom. Depression, no matter what its source, is a dark place to be. At my worst, even the presence of my beautiful children wasn’t enough to pull me from its depths. For many who will read this, depression just isn’t something that can be understood. I get that and accept that. But for some, even if it’s only one person, a sense of familiarity will ring true. And this is why I write. If the loneliness that is depression can be relieved even just a little to someone reading this then it will be worth having put the words down for all to read.

This past year of struggle was also heightened by the complicated nature of caring for a child with special health care needs. For me, Chloe’s rise out of constant crisis left me with a bit of post-traumatic stress. I was just exhausted and fatigued from all the worry and constant state of heightened fear for Chloe’s health. When she was better, I suffered from two emotional problems: 1) what to do with myself now that she was better and my psyche had adjusted to living in constant stress and 2) the decrease of adrenaline once the heightened stress subsided, leaving me open to the post-traumatic stress. So take the physical virus, the emotional component of caring for a child with special health care needs, and the constant financial stress related to Chloe’s care and you have the makings of a perfect storm.

So many times over the past year I sat down to write, but each time the darkness overtook me and the words just didn’t flow. Or they did, but they were from such a sad place I didn’t dare post them. I write now, as the storm passes and through the clouds I can once again see the glimpses of light. I can look into my children’s eyes and feel warmth and true joy and laugh ALONG with them. I can feel hope for my family AND myself and know that everything is going to be okay again. I can know with confidence that Chloe is going to be okay, at least for now and that the simplest cold is no longer going to threaten her life. I can watch my older children rolling around with her on the floor and not worry about how they’re going to handle the stress of yet another trip to the hospital. I can accept and enjoy the comforting embrace of my husband or the sweet tender kiss on my cheek from my mom. I can FEEL the warm hug from the sun as it shines through my window. I can laugh. I can cry. And most of all I have hope again. I feel lucky to once again emerge out into the light.

I hope that if anyone else out there is struggling with depression that they will know they are NOT alone. And that every struggle we face, in the end, makes a stronger, better people.

Puttin' On the Pounds!

So Chloe weighed in at a whopping 19lbs 6oz last week. I'm so proud of her. That's over a pound in a month! She's now 70th percentile for height and about 20th percentile for weight (up from the 5th). That's on the Ds chart. She's right in with the rest of the family. Tall and skinny (well, as kids anyway!) I think I'm going to cut out one of her daytime g-tube feeds since she's obviously eating really well. I found that she'll actually take some milk too if I don't do that feed. Yesterday she took 5 ounces and today she took 4! So I'll cut out the 6 ounce feed and give her any ounces she misses in the day at night. I'm very excited. It's a big step.

"I wish she didn't have Down syndrome"

That's what my niece said to me when we were visiting CA. "Really?" I questioned. The statement had caught me by surprise and quite frankly I wasn't sure how to respond. In fact, I wasn't even sure what I felt. . . "I don't," I then followed up. "I like her just the way she is." As I sat and thought for a minute, I realized what a weird thing to think. . . by me, not her. Why wouldn't I want my child to NOT have Down syndrome. To NOT have to struggle with simple things like raising her arms against gravity. To NOT have 7 doctors that have to manage her complicated care. To NOT have to fight to breath whenever she has excessive secretions. Why wouldn't I want her life to be . . . well. . . normal??? But to anyone out there who has a child with Down syndrome or special needs, you may know what I'm talking about. Whatever makes our sweet Ms. Chloe "not normal" as some might say, is what makes her special. I think "special needs" often dredges up negative emotions, but to me I have come to learn that the "special" really means just that. She is special beyond what I can explain. She touches us in ways I could have never imagined an infant capable of. Adults and children, boys and girls, men and women, people of ALL abilities are touched positively by her every day. How could I EVER wish she NOT be her. The Down syndrome just happens to help make her who she is. Do I wish her life were easier? Of course! What parent wouldn't. But Chloe is magic and I wouldn't do anything to take that magic away. Ever.