Sunday, October 31, 2010

31 for 21: #31 Tricks and Treats

We enjoyed Halloween tonight. Gabriel was too old to trick-or-treat this year and got to be an "adult" and helped to supervise his sisters...he went as a biker dude in tattoos and my Sturgis T-shirt. Amelia went as Tinkerbell. Charlotte went as a Squirt the Turtle from "Finding Nemo". Elise went as a Cat/Wolf...depending on the moment you asked...very fuzzy and white with a tail and no ears. She apparently relied on sound effects. She was happy...that's all that matters, right?

I am stealing shamelessly from a bloggy friend. She has done this for the last several years, and it was so cool, I am copy-cat-ing. :) She lists 21 factoids about her son and it is like a personal snap-shot for each year. 21 for the 21st chromosomal set that determines Down Syndrome.

This is my first "21 things about Elise":
1) Elise LOVES wolves, sharks, and pigs!! Charlotte's Web, 3 Little Pigs and the Big Bad Wolf, you name it!
2) She could live on sandwiches. Turkey on Wheat or PB&J for breakfast, lunch, and dinner.
3) Elise likes to sleep "upside down" in her bed. Her head at the foot end.
4) Elise demands that she have her Care Bears lined up on either side of her pillow. If they are not lined up in the proper order, she will switch them up or she can't sleep.
5) She loves "How to Train Your Dragon", "Ratatouille", "Wallace and Gromit: The Curse of the Were Rabbit", and "Toy Story".
6) Elise loves stripes and wants to look like "Where's Waldo" every day.
7) She loves computer games and her Leapster.
8) Elise has only just started playing independently and it involves Playmobil toys. And she will happily play for hours. She loves playing with the wild animals in the barn. Which I find funny!
9) She always wants you to read but will only sit long enough for about half of whatever you were going to read. Whether the book is 10 pages or 60 pages...
10) She hates shoes and socks and takes them off the second you start the car or pull out into traffic.
11) She has funny little duck feet. Her feet have narrow heels and a very wide ball of her foot resulting feet the shape of triangles. I love seeing her wet foot prints...and so does she, she walks in circles watching her own footprints.
12) She has only just gotten brave enough to get in the pool with arm floaties on...and two times at the very end of the summer she allowed them to actually float her.
13) Elise is Tweedle-Dee to Charlotte's Tweedle-Dum
14) Elise calls her two favorite "shadows" (the people who watch her at church and make sure she doesn't run away) "Booby and Mook". They are otherwise known as Shelby and Brooke, and them being called that never ceases to amuse me.
15) Elise hates having her hair brushed and likes her hair cut short.
16) She will growl and spit and do a little lock-kneed, goose-step march jump if you try and make her do something she doesn't want to do. There are some days I would like to try it. :)
17) She thinks the IHOP commercial where the trick-or-treat-ers get pancakes and syrup in their bags, is fall-down-on-the-floor hilarious.
18) Elise loves pizza, but won't eat anything on it but cheese. (And won't eat cheese on sandwiches.) She is going through a stage where she wants the pizza cut up and to eat it with a fork.
19) Elise LOVES to mix and cook and look at recipe books! But refuses to eat any of it.
20) She loves microphones and will do just about anything to talk into one!
21) She sucks her thumb when she is tired, upset, or stressed. She likes to pet your cheek or eyelashes if she can sit close enough. And it is probably why she has enough room in her mouth for her teeth...so her dentist is not terribly committed to encouraging her to stop sucking yet, unlike 4 years ago...now he credits her with spreading her own palate...so she gets to buy a little more time...and I am thankful for it for her!

I look forward to seeing how she grows and changes! I can't wait to look back over a few years of these lists!!! Happy October!!!

31 for 21: #30 Simple Words

Sometimes I feel like I live my entire life in some sort of Word-Association game.

We went to a friend's house for a Halloween/football game party last night. We got the the neighborhood and Elise starts asking about "Chips?" Because every time we go to this friend's house, there are chips and dip.

When we have to go to a doctor, there are a lot of one word and sound effect questions, "Beep, beep?", "Ouch?", "Ahhh! and ear?", "Teeth?" Each question is an association to a particular doctor.

If I say we are going somewhere, she starts in on where she'd like to go: "School?", "Books?", "Eat?", "Play?", "Hit ball?" and so on...

Every movie we watch has a particular one word description, every game, toy, or activity does as well.

They are trying to get her to use phrases at school. And when she goes out of her way to use as many words to request something as she can, I really try to say yes, so she decides to makes the association that more words get a more positive result. Sometimes I can't say yes, but I try to.

However, the longer I live with Elise and am subjected to her 20 questions, the more concisely I think. And the more simplistically I am pleased. Sometimes simple is honest. Sometimes simple is best.

"Simple" used to be a term used for people with milder mental disabilities. And after the last 8 years of my life being boiled down to simple and uncomplicated, I don't think that is a negative or misuse of the word. In fact, I wouldn't mind it be a description for myself.

Simple::Pure

Not all bad, huh? :)

31 for 21: #29 Live Action

Sorry I didn't post on Friday, but we had to jump through our hats to get to Chattanooga and see Disney Princesses on Ice.

My very-best-friend-for-a-million-years moved this summer 2 hours north of Chattanooga and made the spread between us 4 hours... Growing up makes friendships complicated sometimes. She is one of 3 friends that moved away in a 4 month period. For the record, nobody else is allowed to move. Seriously. Or it's going to feel like I'm the one who moved.

But, I digress, as usual.

She called a few weeks back and asked if me if I wanted to take all our girls to see Disney Princesses on Ice. Her husband could get a discount. Oh, yeah! She called back later offering to give Elise her ticket as her birthday present...which I said yes to, if she liked it. :)

So, after another awful Elise-afternoon (I'm beginning to wonder if we should write half-days into her IEP...) I threw myself out of the car-line on Friday and proceeded to get hung up on every single possible traffic slow-down.

We got there a smidge late, but in time for all the good stuff. We got there in time for Aladdin, which is one of Elise's favorites...but even Aladdin could not assuage the fear of going down the open stairs of an arena...so, we are there late, and Elise is doing a wail/growl thing as she inches down the stairs to our VERY good seats....only a few dirty looks... As soon as we find our seats, Elise is promptly spell-bound by the lights and music, the stairs forgotten. After every single program featuring a princess, Elise would turn to me enraptured and plead "More? or home?" She was thrilled EVERY time I promised more to come.

Elise LOVES baseball, basketball, and hockey. I find myself wondering if she loves the sports or the venue. She loves the live action stuff. She loves to cheer. She stood after every program and clapped and cheered and "woot, WOOT"-ed.

Rather than take out a home-loan for concessions and memorabilia, I snuck in Princess Polly Pockets and Goldfish..which they received at the intermission...and after the trip to the bathroom, up and down the stairs and apparently freaky sinks in the bathrooms, everybody deserved a prize for being associated with us!! I am thankful I went with a friend as loyal as family and I didn't fly solo.

After the intermission, the final program was the entire story of Cinderella. Complete with the mice and magic. Elise was utterly enchanted and captivated. She gasped and was bewitched at every turn.

I am, personally, not sure if I was more beguiled by the show or Elise's pleasure. I expected Amelia to be thrilled, for her little heart to be filled with all the princesses and magic, but I didn't know what to expect from Elise.

Disney proved why they are a power to be reckoned with, once again. And why their name is synonymous with magic.

Thursday, October 28, 2010

31 for 21: #28 Mom Card

I'd like to pass on my mom card today. I'd like for when something goes wrong for someone else to have to fix it.

I'd like for an actual brilliant and insightful person to be me for a couple of days...and then when they've figured out how to fix it...I'll come back and buckle down.

I am not brilliant. I will not get the Awesome Mom Award. I am stubborn and can put one foot in front of the other. My spiritual gift is perseverance...that's probably my spiritual curse, too...sometimes I don't know when to quit.

Today, Elise had an incredible morning. She worked hard, followed directions. She kept her hands to herself. She participated.

Today, Elise had a bad afternoon. She hit and hurt one of her best friends.

I have no idea why. Nobody does. She can't tell us. We don't know if it was an impulsive mean moment. We don't know if it was Elise trying to get attention. We don't know if it was frustration. We don't know if it was anger at someone else, something else. We don't know if she was tired. We don't know if her medicine made her feel icky or she just up and got mad.

No idea.

I like to think that when she is able to explain HOW she feels we might be able to set up safety interventions or it won't even come up, because she will be able to express what she wants or needs before the frustration or anger comes out. Until then, I can only hope and pray that we can anticipate and stop her before she hurts someone. I hope and pray that she begins to understand when she does something that is mean or wrong. I hope that some day her good days outweigh her bad days.

I like to brag and tell when she is brilliant. I love to tell you good news and God's miracles. I love to tell stories of "typical moments."

I hate to tell when my baby is mean. I hate to tell when she is hurting. I hate to tell when she is frustrated. I hate to tell about moments that may put her "typical" opportunities at risk. I hate to tell when I don't know what to do.

I am thankful that even bad days are not too insignificant for God's attention. I am thankful that God knows the answers.

I will continue to give her negative behavior the negative consequences that it deserves. I will not turn a blind eye. I will pray. Hard. I will be hopeful and prayerful that she will make better choices as she learns that her friends respond positively to positive choices.

I will pray that her friends will not be hurt. I will pray that they will not fear her and shun her.

I will pray that she will find her place. And I pray that I will have the strength and insight to help her find it..

Wednesday, October 27, 2010

31 for 21: #27 Mad Computer Skillz!

Elise may have delays. She may have her struggles...but let me tell you that girl has mad computer skillz!!!

When she was four, she got herself from PBSkids.com to Shopzilla.com...and yes, her shopping cart had an interesting combination of things collected. I'm just glad she didn't know my credit card number.

Last year, she changed our computer wallpaper from the standard choices, to a picture of her sister. I am not completely sure how she did it.

She can access things that make my brain hurt. I do not have the same bookmarks on my computer as she does at school...but she can type in enough of the URL to get to websites. I kid you not.

She can play games and can navigate the web such that she could put some adults to shame. She knows how to get games on my iPod and can access more features on her iPod than my friends. She can save her "work" on my desk top and I have a couple of Word documents there that she has written on any given day...

She loves touch screen modifications, but is very adept with a mouse and keyboard. I anticipate her only getting more proficient. I would not be shocked if she manages to get involved with a IT type of job!!!

The more computer-ized the world gets and the more stuff she pulls off, the more I think that there are a lot of people out there that may need to watch their jobs a little more carefully in the coming years!

She is virtually unstop-able when she gets her determination into gear...watch out world!!! The Geek Squad may be up for a make-over...

Tuesday, October 26, 2010

31 for 21: #26 Soap

I can smell a hospital. I can. I can smell if you've been in one recently. I used to think it was the latex or the adhesives. It's not. It the soap.

When I smell hospital soap... I smell when Elise was born. I smell when she was in Cardiac Failure. I smell racing to and from the hospital and work at lunch break. I smell when she had Open Heart surgery. I smell when she was in the CICU. I smell seeing her have pink cheeks for the first time. I smell when she was admitted for the pre-cancerous low platelet condition, Thrombocytopenia. I smell ALLLL the bone marrow aspirations and blood draws. I smell the CAT scan just before we were told that the leukemia had finally presented. I smell the discussion with the oncologist about the chemo protocol. I smell all the chemo treatments. I smell learning to change her external port dressings. I smell nurses taking readings at 3 AM. I smell sleeping in a giant crib. I smell watching her take her first cruising steps in the hospital family room around that tan couch in her brand new tiny orthodic inserts. I smell posting her status on the computer while talking to other mothers on the treatment floor. I smell talking to a teenage boy who told me he couldn't sleep because he didn't feel like he had enough time. I smell asking a nurse where he was because I hadn't seen him...and hearing that he had been right...that he was gone... I smell talking to friends and learning that the chemo was no longer going to "buy" them any more time with their precious baby... I smell tears. I smell fear. I smell knowing that I didn't "deserve" extra time with my baby... I smell wondering why God had chosen my child to survive over another child. I smell hurting with others. I smell the port tubes being removed after she bit it beyond repair. I smell the balloon celebrating the end of chemo. I smell the panic when the doctors told us we didn't need to come for blood count checks every month. I smell the tonsil and adenoid-ectomies. I smell the ear tube placement surgery. I smell her teeth being handed to me in a plastic jar. I smell the sleep study. I smell worry. I smell holding my child down so she didn't have to have a stranger holding her down for procedures. I smell emergency room waiting rooms. I smell melancholy...wondering why we would be there next... I smell grace and others' loss... I smell exhaustion and loneliness. I smell thankfulness and compassion.

I feel old when I smell hospital soap. Like I've lived longer than the years the math says it's been...

When I smell hospital soap, I smell too much...

Something Snuggy for Your Buddy!

A Bloggy friend is making the CUTEST hat for Down Syndrome awareness month! Go check it out!!!!

Check it out HERE for "Something Snuggy for Your Buddy"!

She is making a Hudson Hat in the yummiest colorway in the Down Syndrome Awareness colors...Love it!!!

Monday, October 25, 2010

31 for 21: #25 My Girl

I wasn't going to have girls. I sat God down and told him this. We re-visited the subject many times...from the time I was about 12. NO GIRLS! When I got married, my husband agreed with me. No girls. At the most one. If we had one, then no more. Our first was a boy. It was wonderful. He was adorable, fun, and just what we had requested....a perfect, healthy boy.

Then we got pregnant the second time. Immediately. The first month trying...there was a bigger gap between our kids than we had planned as Gabriel had been a surprise and Ethan was still in graduate school...but as we faced his last year in graduate school, with all the degrees he had planned on getting, we felt that God was giving us the green light to start trying. So, three years later, we got pregnant with our first planned child. Ironic, isn't it? But, I digress...

So, we of course had several names picked out for our 2nd beautiful boy....and discussed again how if this was a girl, we'd be done... But Gabriel was on the other team cheering for a girl...and I found myself actually half hoping that he would get his wish despite my own hopes....

When we went to the 2nd ultra-sound, I had mixed feelings on what I hoped they'd find...They did a LOT of measurements that day, the baby was measuring tiny, so they bumped "her" due date back by about 2 weeks...I remember them spending a lot of time looking at her little finger, it was SO short...but there were 3 bones in it (Many babies with Down Syndrome have only 2), and so they never did any more ultra sounds... even though she was breech, since I was planning on a 2nd c-section, there was no need to double check that, either...

I got to call Gabriel and hear his yelp of triumph. And so I accepted this derailment of my Plans. BUT NO PINK! Absolutely not! Uh-uh!

I was very sure that they were not mistaken about her original due date. There was no room for a 2 week adjustment, but after Gabriel being such a giant of a baby, I was kinda excited that she was running a little tiny...maybe she would actually be a baby for a little bit!

I started having contractions too early and they got serious 7 weeks early...and so I was slapped with some starter drugs, and then the next line, and then the mac-daddies...and they went ahead and gave me some steroids to mature her lungs a little bit early, since they were not able to stop them completely. And sent me home on bed-rest. Joy. Yuck.

I watched all the girly movies I could get my hands on...Pride and Prejudice, Little Women, and Beauty and the Beast (it was released that week) . I quivered and didn't sleep for 3 weeks until they let me up to go back to teaching...for 2 days...at which point I went into labor for real...and they decided to let it go. They rolled me back for the c-section and, very quickly, I was handed my angry little girl. She didn't cry. She just scowled at the world with her lip run out, like we had totally torqued HER big plans. She was tiny, at 5lbs 14oz and 19 inches...with pretty little blue eyes that were tilted like a kitty cat...and I thought she was so pretty. They whisked her away to the nursery under the guise that they wanted to make sure she was okay having come so early (They thought about 4 or even 5 weeks early...I knew it was only 3 weeks.) She got scrubbed up and got a Tennessee Orange ribbon tied into her hair (it was game day and Neyland Stadium was about 1 mile away).

My obstetrician, as I've said, was visibly distraught when he told me that they suspected that she had Down Syndrome.

At that point, I'd only been shown her twice and kissed her as they bustled her out the door, to check their suspicions...

I was wheeled by the nursery to see her when I was moved from recovery to our room...and I could tell immediately that they were right...even though I tried to talk myself out of it for the next 2 weeks...

I think I went through all the stages of grief in fast forward...and then went back and revisited them later...over and over...

But they were easy to ignore, with a baby in my arms....a tiny, beautiful baby... who was perfectly happy to sleep...and sleep and sleep and sleep...

She was so tiny that my mother-in-law went shopping to get a coming home outfit because she was swimming in the outfit we had chosen. They only carried their preemie clothes on-line so she brought back a doll outfit. Even it was too big.

And I graduated to not wanting a baby girl to amp-ed up protector, just shy of crazy. When I was given the option to put her up for adoption or even a home..."they" had a lot of problems and maybe I wouldn't want to deal with them? I was barely able to bite back my snarls of protection...and I knew that this was bigger than me and my plans. She'd been given to me and I was going to trust that God would give me the energy and answers I did not have...

And I snuggled her and allowed myself to fall in love, even though this was SO not what I had planned.

And so 8 years have passed. And my old self has grown up. My volcanic temper has been channeled to an calculated and inflexible steel for my child's needs. My impatience with EVERYTHING has been beaten down to a patience I never expected. My rush to do things has slowed and I appreciate the little things in my children's lives. I find my measure of successes being much different than 8 years ago. My girl showed me that girls were not to be feared and now I have 3. They have a pink room and wear pink. They have dolls and wear sparkles...and I am struck by the divergence from my plans every few months and laugh...and they laugh with me, thinking they are so spiffy in their eye-burning pink dress-ups and flashing high heel shoes.

Elise lives her life with no regrets and it has rubbed off on me. I used to spend an inordinate amount of time second-guessing my choices and words and actions. Now I do what have to do and am thankful that God doesn't put it all on me. He shares his yoke, which is amazingly light...and I am thankful for what I would have resented...and I am at peace.

Happy Birthday, My Big Eight-Year-Old! May you teach me as much about God in the next 8 years as the first! May I be the mother that you need...and have the wisdom to allow you to do what you can and not to protect so much that I smother you. Keep us celebrating! I know that you bring us close enough to hear the tinkle of the angels' laughter...and I don't want to forget to listen...make sure you stop me when it is time to eavesdrop on heaven...

I know you know! I see it in your eyes!

31 for 21: #24 Resources

I spent the time that should have gone to this post on putting together some of the best resources that I have come across and I have found the most helpful.

There is a new tab with hyper-links to everything...look up and there is a new tab that you can use where I am going to continue add as I find Very Useful things!

I will be putting up a list of Blogs soon, too. Although it will undoubtedly mirror the one I already have up as a tab on the Facebook Page.

Should I put up a tab with anything else specific? This blog is still under construction!

I will be putting up a Birthday Post later today! :)

Saturday, October 23, 2010

31 for 21: #23 Bean Bag Baby

I got to hold a baby with Downs tonight. I've known her for a bit, but this is the first time I had a moment to snatch her.

Oh! I've forgotten how they feel!

A baby with Downs feels physically different than other babies. Their trunk is a hair wider in proportion and their joints and muscles are softer due to low muscle tone. Mind you, they may be just as strong or stronger than their counterparts, but at rest, the muscles and joints have more "play".

But as you hold them, their little low muscle tone bodies sink into you like a toasty warm little bean bag. They almost drape themselves about you, rather than resting against you. Like a sleeping cat...

Almost eight years ago, I was wrapped up into Elise for the first time. And I will happily never be free.

She would sink into me in my arms or in my first sling, and "murf"...you know, those happy little baby moans of joy. She was so happy to be snuggled up with me, her joy constantly escaped in sighs...."murf, murf...muuuurrrff..." Almost like she was purring...

It has been eight long years...it has been eight short years...and I adore her. I love her more than words could ever give justice...I love her more than I ever felt possible...she is my girl.

Thursday, October 21, 2010

31 for 21: #22 Doctors are Really Expensive Friends

So I just got off the phone with Elise's ENT's nurse practitioner. She is super nice. Her name is Carol. I have her personal email. I recognize her phone number. I greet the phone with, "Hey, Carol." I did not know her before. I have never hung out at a coffee shop with her, but I have spent an excessive amount of time with her and on the phone with her. She is married, and has two kids. She is allergic to milk and is pretty sure she's allergic to grass, too. That's why she can't take the alfalfa tablets that her very homeopathic-friendly supervising physician sells.

What on earth? How do I know her this well? She's one of Elise's specialists. I am also on a first name basis with 3 oncology nurse practitioners, 2 oncology physicians, one cardiology physician, 3 pediatricians, 4 pediatric nurse practitioners, and a surgery scheduler. Also a whole host of nurses. And a partridge in a pear tree...in case you're keeping track.

I was comfortable with the medical world before I had Elise. I had planned to go into medicine. I think God was prepping me for my own life. I am comfortable in a hospital, my dad is a nurse anesthetist, and he always used proper medical terminology for just about everything...and so I pretty much know what everyone is talking about. I have, of course, added to my medical glossary with Elise's conditions. For example, I know what a frenulum is now. You have 3 in your mouth. They are the little "thingies" that tie your your lips to your gums, and ties your tongue to the bottom of your mouth. And they both bleed like snot if they get torn. And there are other lovely things I probably would have preferred to live in blissful ignorance about.

I know what screening questions they are going to ask if you call the urgent care nurses due to a fall or injury...and for the most part, I know if it is worth a phone call or a Popsicle or a straight drive to the emergency room.

I like the doctors and nurses that are in all the offices we frequent. They are sweet. I am sure we are subsidizing their retirement, but after the wailing and kicking and attempted bites they take. I assure you, they deserve it.

There has always been a curtain up between doctors and their patients...I am not sure why that is. I am not quite sure why we have been admitted to the friendly side, but I enjoy it. They are real people and deserve our appreciation. This is not to say there aren't creeps sprinkled throughout the medical world, we've met our fair share. But as brassy as I am about calling doctors on the carpet, I am just as capable of dumping those who are torturing us for no good reason. I do not suffer ineptitude.

So, if you need a specialist. I probably know one and can name names. And I know if they are good or great and who would be fun at a coffee shop to boot.

Wednesday, October 20, 2010

31 for 21: #21 Homework

Elise loves homework. LOVES it! She wants to do hers, she wants to do her brother's, she wants to make her sisters do school....she is depressed when it is Saturday and she can't go. Sunday School at church helps bridge the gap until she can get her fix.

Gabriel is disinclined to do his homework. He is disinclined to do his classwork. We are having a bit of a battle right now. Now, this is not to say that it is a shock. He is in 7th grade. I don't know a soul who didn't try to get away with a little something in middle school. But it has always been a little bit of a tussle to get him to do his work. The funny thing is, his teachers write "He is such a sweet boy. He just needs to pay attention"..."focus on his work"...."turn in____." So I guess I should be thankful that the laziness is not going hand in hand with a snarly attitude.

Elise, however, gets "She works SO hard in class! She loves the computer! If only she would keep her hands to herself." She comes home begging for TV, but she can be derailed if you offer homework. She asks if she can watch "Rat Cook" (Ratatouille), if you say "No" she'll pitch a mini fit. If you say "No, but you can do math", she'll come with out a murmur, sometimes even a "yay!"

I wish all my kids had her work ethic. She will sneak windex and try and clean the kitchen. She'll return to a project that interests her constantly until it is complete.

I have been approached by several people suggesting that I should pursue the ADHD diagnosis and consider medication. That perhaps an easy fix to her impulsivity would help her keep her hands to herself. Occasionally, I think about it. On a particularly "red" behavior week, I think how nice it would be to not battle this. I would happily allow her to drink Coke, but she doesn't like it. I encourage chocolate...the caffiene that make most people a little strung out, mellows her...it has the opposite effect on her as it does on most people. (Benedryll is like giving her Speed. It does NOT make her drowsy.) Which is a arm-chair confirmation of the diagnosis of the ADHD. On really bad days I push the caffiene. But I drag my feet on the diagnosis. I don't want her on meds. They still don't know the long term effect many of these drugs will have, we are still on their first generation. We certainly don't know the impact on kids with Downs. Their systems are so fragile, that any negative would be compounded. And I really don't want to risk losing her passion for everything! She is so awed and excited by life. And there is no substitute for Love of Life. No pill that can replace that if it is lost.

So, we continue to pursue behavior modification. And get excited by every social improvement we see.

School continues to be a reward on the behavior scale. She is SO proud to show me her returned assignments. She is thrilled to demonstrate counting or telling me information that she learned. I believe that as she gets older, she will continue grow scholastically, and being allowed to attend school will act as a giant behavior modification, and we will continue to see massive growth in that area. She is so socially driven. (Her father's daughter!)

She is reading simple sentence books.

Here is a video I made last night.
I am SO proud of my girl!!


video





She is growing physically like a weed and mentally by leaps and bounds...I don't know if her new teacher has more of a handle on what drives her, or if this year is a culmination "click" year. But I couldn't be more impressed with Elise's gains. My hope grows with each returned work packet and book read.

And chocolate is good for you anyway, right?

Tuesday, October 19, 2010

31 for 21: #20 Clarifications

In writing the last 2 entries, I neglected those of you who don't really know me.

I am a freaky, verging on obsessive, mother. While I have never been a freaky germ person (barring the time Elise was on Chemo and the following year while her white blood cell count was low), I am very aware of my kids and their safety. In case any of you lovely people were considering calling DFCS, the post on Elise's opportunistic abilities was an illustration of her abounding abilities and stick-to-it-iveness in the face of her IQ...every time she does something, I am forced to try to "proof" it.

This is tricky, because her abilities have her advanced enough that if you "Elise Proof It" then you have "You Proofed It", too. I currently have 3 gates up, twist-ties up on two cabinets, a zip-loc on the fridge, 6 barrel bolt locks, we installed a key lock in the front door, we are considering installing another 3 barrel bolts or 2 key locks...We wall-mounted our TV to protect it. I have locked all the doors inside the house and carried hair pins to let myself in for months...this hacks Ethan off, but he also doesn't like his stuff broken or carried off or dropped off the porch railing (oh, yes. the voice of experience again). She has broken 4 toilet locks, 5 "safety pin locks", and ripped screwed in locks out of the wall. If I don't want her watching TV, then I have to unscrew the cable co-ax cable.

I just wanted you to know that her antics and their consequences are not for lack of preventative measures. It is just that the part of your brain that tells you that something is a bad idea is not mature in Elise, yet. And she is super impulsive. (The pediatrician is considering a secondary ADHD diagnosis, too.) I watch her like a hawk, but I can't be "On" 24/7, and this fact scares me. I pray. A lot.

I also have notified all the neighbors of her penchants and how to get a hold of me and which house is ours. Thankfully, she tends to visit the same people. She finds someone she likes and revisits...so we have regular spots to check...

I have also bought a Brickhouse Child Locator for times when we are allowing more experiments in personal freedom.

And on the entry subject of grooming and clothing choices, we are not discussing naughty child, I-don't-like-that-so-I-won't-wear-it, fits...we're talking sensory processing/defensiveness issues. So, that is a whole other barrel of monkeys. This is one of the additional benefits of her Hippotherapy. We see a significant impact on these behaviors and see a difference in her behaviors when we miss a week. (I do have a lot of sympathy for this, as I have struggled with it myself for years, too.)

With the sensory "stuff", she also pets things and people. And while it can make you nuts if she's petting your eyebrows or eyelashes while you are trying to watch TV, it really is sweet. You feel very loved. So there are perks. :)

I just wanted you to know that I have not thrown up my hands and said, "I just can't do anything." It's just that there are a lot of outside factors that need to be figured in. We continuously try new things and constantly make sure that she is cared for physically and encourage her independence...while keeping her as safe as we can. Honest.

31 for 21: #19 Searching for Pants, Sam I Am!

Elise does not like to be bathed. She does not like to get her hair wet. She does not like to take a shower. She does not like to be scrubbed. She does not like to be baby wiped. She does not like to have her hair brushed. She does not like to have her hair put into pony-tails. She does not like tooth brushes. She does not like tooth paste.

In short, she does not like to be groomed.

She does not like to change her clothes. She does not like shoes. She does not like socks with terry cloth loops inside. She does not like flip flops. She does not like to walk in bare feet outside. She does not like to walk on grit on hard-wood floors. She does not like certain fleeces. She does not like velcro. She does not like sweaters. She does not like tights. She does not like panties that are too loose. She does not like panties that are too tight. She does not like hats. She does not like cuffs on shirts. She does not like the internal adjustable elastics in the waist band of her pants. She does not like belts. She does not like pants that are too long. She does not like her pant legs rolled up. She does not like buttons. She does not like turtle necks. She does not like skirts. She does not like leggings. She does not like what you must wear, She does not like them here or there, She does not like them, Sam I Am...

In short, finding clothes that she likes to wear is holy you-know-what.

Seriously, I hate season change because we have to go through all her clothes to see what fits. And then there is a whole 'nother issue to see what she is willing to wear of those that fit...After a few weeks into this science experiment money is no object if we could get dressed without a fit.

Right now Elise likes stripes and Gabriel's hand-me-down t-shirts. And a pair of Nike tennis shoes that won't fit for more than another month...they may really be too small now. (Which precludes half of her socks.) Pants? Um, we are still looking for some that don't drive her to spitting and keening...

I admit to letting her sleep in whatever shirt she will wear the next day. I have been known to wait on brushing her hair until she is in her car seat and can't get away. I am paying her off for putting on her pants, shoes, and brushing her teeth with movies on my iPod....and who knows what new lows I will have to stoop to. I like to think that this area of life will get better with better communication skills. When she can tell me why she likes particular items of clothing so that we can duplicate them, it will certainly open our options...

Once she is clean, she is charming and beautiful. Once she is in clothes and on to the activities of the day, she is great fun.

But if she could be washed and dressed in her sleep, it would make things easier. Much, MUCH easier.

And that's all I have to say about that. :)

Monday, October 18, 2010

31 for 21: #18 Smarts

This society wants their kids to the be the smartest and the best. The comparisons start early. We want our kids in the "best" daycares and preschools. We watch their grades like hawks. We push them to do their best at T-ball and high school football. We all but over load them in extra curricular activities from the time they can talk and walk. We test their IQ's and make them do flashcards over the summer.

There are some people in this world that have IQ's that are sky high, gifted beyond gifted, that barely function in society. Their intelligence alone affords them full rides to colleges and graduate schools, they however have no commonplace abilities that allow them opportunities in the day-to-day. They have difficulty making friends and they have difficulty holding jobs because their brains are living at a different plane from their bodies. They are often unhappy and wander through life searching for someone who understands them.

There are people whose IQ's are so low that society is horrified that their parents chose to have them, because they cannot possibly have a good quality of life. And yet these same people work multiple jobs, have TONS of friends, and love their life. The world is their oyster because they make the most of their opportunities. They make friends because they see the best in others and want to understand them!

How badly are we mis-judging others? Who really has the best quality of life, here?

Elise has a scary low IQ at present. (Like she should be sitting in the corner staring at nothing.) She is virtually non-verbal on the testing scale, and this skews her results. We had to get a psychological evaluation for a secondary insurance, but I declined to allow the results to be evaluated for her IEP (Individualized Education Plan). These are the kind of numbers that a licensed professional would look at and tell me that my child will have a terrible quality of life and no opportunities.

In real life, however, Elise has a concrete understanding of opportunities unlike anyone I have ever met. She utilizes her time in a way that puts her siblings to shame. She can actively plan as she goes to get maximum results.

For example, I can go the the bathroom and she will utilize those five minutes to get a chair, bring it over to the pantry, get in the door lock, scale the shelves to get her favorite box of crackers, pour it into a cup, put everything back, and snarf down the crackers. The only evidence of this activity being her Wheat Thin-y breath, a random cup with crumbs at the bottom, and a pantry door that is ajar.

I can take a shower and she will get out of the house (we have since put up bolts at the top of the doors), break into the neighbor's house, steal several Frisbees, play with their dog, feed it the loaf of bread she took over, come back in the house, load up a DVD of her choice, change the TV input feed, and push play...with the only evidence the empty bread bag in their yard and the not-our-Frisbees in the magazine rack. (Oh, and lest you think I indulge in long showers, I can shower and dress in less than 10 minutes.)

Elise ate all the leftover desserts from our Stew and Pumpkins Party last night, because I was putting away our laundry and told her to wait 15 minutes til I could make supper. And by all, I mean all. She ate 3 mini cupcakes, with a spoon and a plate. And probably 6 pumpkin sugar cookies with sprinkles. (It makes me absolutely sick to think about eating that much sugar on an empty stomach.) This was done with her brother and sister in the adjoining room, so it must have been done silently, as well, or they would have stopped it, or gotten in on the raid. Opportunistic, doesn't begin to give it the recognition it deserves.

She is not one to miss opportunities. I am confident that this will extend to her future. She can't help but succeed...and surprise anyone who looks at numbers alone.

She likes to dress up in wraps and scarves and tell me that she is a "surprise". Yup, that's pretty much it in a nutshell. As usual, she knows what she's talking about.

Sunday, October 17, 2010

31 for 21: #17 Dora has Downs??

I've said for years that I think Dora has Downs. (Teasingly, of course.) But if you sit down a look at a picture of Dora, she has a lot of physical similarities.

She is short of stature, her torso is long in comparison to her arms and legs. She has larger hands with limited movement and short little fingers. Her eyes are very almond-shaped, appearing to have a prominent epicanthial fold. When she smiles, you often see her tongue, appearing to be a little large in her mouth. She has an almost non-existent bridge of her nose, and a flat-ish back of her head.

If you live at my house, she dances exactly like Elise...and she is very curious...and she is very joyful....and she is adamant that you play her game and interact with her plans! I'm telling you, she may have Downs!

I was wandering about and found this little gem...and I am DYING to see it!!!! How cool is this???? A cartoon where the focal character has Down Syndrome...and just lives her life! Not scary or weird or whatever, just life! AND people with Downs have been consulted in the creating and writing of the script! I hope desperately that the US brings this over!!!

Punky the Irish Cartoon Star with Down Syndrome

Saturday, October 16, 2010

31 for 21: #16 Pumpkins and Birthdays

We were carving pumpkins tonight which brought to mind one of my favorite Elise moments...

Elise's birthday is at the end of October, but before Halloween. A couple of years ago, Elise enjoyed singing "Happy Birthday" and blowing out candles so much she took it on the road.

When we went Trick-or-Treating, she took the opportunity to sing "Happy Birthday" to herself and blow out eveybody's Jack-O-Lanterns....EVERY SINGLE ONE in the neighborhood!

Really!!! HAHAHAHA! Tell me you don't LOVE that!!!! :)

Friday, October 15, 2010

31 for 21: #15 The Fair

It was 4 years ago, this week, that I had my first truly negative experience having a child that was not like everyone else's.

Up until Elise turned 4, she was so tiny that no one realized that she was different, they just thought she was younger.

But 4 years ago this week, was when we were at the Fair, sitting between the Bee-Ride and the Apple-and-the-Worm-Ride, Elise started whining and spitting over who-knows-what. We got several strange looks and then the knife to the heart. A mother was waiting on her child on one of the two rides, she looked at Elise, at me, and back at Elise and her lip curled...and I heard her say "What is WRONG with that child?" Her girlfriend looked at her, us, and back at her "I guess she's GOT something." And with a lip curl and shoulder shrug we were dismissed.

I know that seems very minimal, but for my child to be scorned and dismissed and me to have to witness it, hurt.

I haven't been back to the fair.

Not completely because of this. The next year Amelia was tiny and it was cold, and the one after that I was pregnant and it was rainy, and the one after that Charlotte was itty bitty. Even though I could have made it, it took almost no excuse to keep us home. I wasn't ready to face the Bee-Ride.

We went to the fair tonight because we promised Gabriel...so we ate supper and went at bedtime...it was insane...and we knew it going...we didn't stay too long...but it was lovely. We took Gabriel on the twirl-around-and-puke rides and the girls rode the tiny rides. Elise INSISTED on riding the Bee-Ride, which was, of course next to the Apple-and-the-Worm-Ride. The girl manning that ride asked me what "she had" nodding at Elise, in the tone of voice that said she knew already. I told her with a clenched stomach that Elise had Down Syndrome. She said that she thought so. Her uncle did. And launched into several stories about him, while the girls enjoyed a monstrously long Bee-Ride. And she turned to me suddenly and and demanded to know if Elise had been treated well by the other ride operators...and I said that she had nothing but fun...and she sighed and said "Good, I'm glad!!"

How sweet was God to redeem the Bee-Ride? He didn't have to. But I cannot begin to tell you how much I'm looking forward to taking the kids to ride the rides next year...I won't have to come up with a flimsy excuse to bail...and Elise will get to cheer "WHEEeeeeeeeeee!" again.

The entire ride home, Elise thanked us for each and every ride she went on. "Kank yoo, Cars! Kank yoo, Nemo! Kank yoo, boats! Kank yoo, slide! Kank yoo, Bee!! FUN!!!!"

I'd just like to add mine. Thank you, God, for the Bee-Ride! It was fun! :)

31 for 21: #14 Music

Sorry I missed a post yesterday. Half days at school are always crazy and last night Gabriel had a band concert.

Which Elise enjoyed thorougly. She's a tiny band groupie. She's who band directors should hire to come to concerts to start the cheers. :)

She LOVES music. Like it's in her soul. She is not picky either, she loves Veggie Tales, Hip-hop, Country, Bible songs, Hymns, and Big Band. Anything, really. She will dance and cheer when the radio gets turned on and sing at the top of her lungs.

For someone who really struggles to talk, she has a great voice. Kinda husky and night-club-y, but she carries a tune really well.

Ethan took her to school a lot last year, she started about the time he had to leave and he went right by it, so she would groove with him all the way there. I admit, I wasn't really aware of what they were listening to so when Kanye West came on the radio and she broke into Gold-digger with it, it really surprised me. :)

I guess it shouldn't. She would sing Brad Paisley, KT Tunstall, Cake, The Chipmunks in my car. She particularly enjoys "Flyflies" (Fireflies) by Owl City, right now.

I look forward taking her to her first concert. I can't think of anyone who would enjoy it more. I would also love to go with her to a symphony. I may try to find a Christmas music spectacular this year. She adores Christmas music...she tried to talk me into it all summer. I admit that I put my foot down...but we did dig out the "White Christmas" movie with Bing for a July showing.

I have found statistics that a very large proportion of kids with Downs play multiple instruments. At first, I was fairly surprised, but am no longer. We got a piano from a friend for Gabriel's birthday and Elise can be found at it every single day.

I have hunted as many learning videos with music as I can, as they are amazingly effective. She retains so much more if it is seeped in music.

She will have a hissy fit if you try and turn stuff off before it has finished...even its last strains, she shares my irritation if a radio DJ jumps in too early.

I wish you could listen to music with her, her joy is contagious. She received a second-hand iPod shuffle last Christmas and while I like to watch her listen, I love it when she breaks out into song. I don't think anyone enjoys it as much as she does...and she loves to share it.

Due to our move and change of schools, Ethan can no longer take her to school...I'm a lucky girl that I get to share a car ride with Elise with the music dancing through the sunshine. I wish I could share her...no, I really don't. Nah, nah, boo-boo! :)

Wednesday, October 13, 2010

Garden of Eagan: A message for new parents

Garden of Eagan: A message for new parents

VERY cool!!! Take a peek!!

More Opportunities

I was contacted over these two websites about some fund-raisers for particular adoptions in process through Reece's Rainbow.

Please consider helping them bring these babies home and definitely praying for them.

Seeking Rainbows

and

Five Thousand Footsteps

31 for 21: #13 She Won't Be Able To

Besides the fact that my doctor who delivered her was such a downer about Elise's birth, he was also the first to tell me she "wouldn't be able to" breast-feed. And he was followed by, what felt like, the entire dadgum hospital. Every single nurse (except Gayle) and the lactation consultant(!) and the pediatrician and the doctor who checked us out so we could leave...EVERY SINGLE ONE told me that babies with Down Syndrome have lots of problems breast-feeding and that she wouldn't be able to, and would I like a bottle of formula?

Me being me, was irked by someone telling me she couldn't without giving it a try...and with each progressive negative, I wanted even more to be able to nurse my baby. When the lactation consultant came in and told me that she really probably wouldn't be able to, I was totally fed up with it, and told her that of all people she should really TRY to be more supportive. She patted my arm like I was crazy and handed me a pamphlet and wished me "the best".

The theory is that babies with Downs tend to have a low roof of their mouth and an over large tongue, which they tend to push out. The low muscle tone that they struggle with also affects the coordination and power to suck. Add in a general sleepiness, in Elise's case, and on paper it looks like a death knell, apparently.

Well, the pediatrician was surprised that Elise was still nursing at the first week check up, and I told him that other than having to be jiggled awake to remember to eat, she was doing really well. She really didn't like having her feet messed with, so I tapped the bottoms of her feet the entire time I nursed her...she wasn't gaining weight in a hurry, so they congratulated me in feeding her and suggested supplementation and sent me home with yet another formula sample.

She continued to not gain weight even though she nursed constantly. (The formula stayed in the cabinet.) Within 2 months, she was diagnosed to be in Cardiac Failure. She had holes in her heart (ASD and VSD) and we discovered with the open heart surgery that her mitral valve was also malformed. During the month between the cardiac failure diagnosis and the surgery, she needed more calories to live. Her heart was working SO hard to pump that ALL her caloric intake was going just for her heart to function, there was none left over for growing. So her doctor told me to supplement and get her to eat even more. We ended up mixing preemie formula and CORN OIL (per a nutritionist!) into pumped breast milk and literally pouring it down her throat with a syringe. During this time both her pediatrician and her cardiologist told me to go ahead and give up, that she would probably end up on a feeding tube of some kind and may struggle with nursing after all this. So I might want to consider giving up and save myself all the trouble. And again, this irritated me to no end...so I stuck it out again, figuring that she at least deserved to try after the surgery.

She was given breast milk in her feeding tube post surgery and her tummy did brilliantly...I nursed there at the hospital, tubes and all and she had no troubles getting back into the swing of things to the surprise of the nurses...and we went home with no feeding tube.

Ultimately, Elise happily nursed until she abruptly self-weaned at 16 months. Just a couple of weeks before she was diagnosed with leukemia. In retrospect, I would have liked to retry nursing her when she was refusing to eat anything, but with the lack of support, I had no idea to ask about if she could start back up...I learned recently, that we could have, but with her biting issues on steroids, it may have been God saving me from a miserable situation...

I am killing two birds with one stone this morning. I am writing this for a Le Leche League consultant who wanted to address how babies with special needs still can nurse successfully. Too often those in the support positions are not educated with the success that can be had despite how it looks on paper. I also wanted to encourage those who are reading this blog who are expecting and new parents who are searching for answers. Sometimes all that is needed is a little dose of stubbornness. If you are willing to stick it out a little bit longer than is easy, the pay-offs can be big. This is only the first of many things where you will have to plug on despite the medical community. Following your gut can be 50% (or more) of parenting...God hardwired mommies to fight for their babies and daddies to protect their wives and children...so do it. Don't fight the urge. He did it for a reason.

Tuesday, October 12, 2010

Please Don't Forget!

I posted HERE about a family who is struggling with a brutal new diagnosis of Pediatric Chiari for their son, Cian. If that was not enough, their daughter, Kaelan, was also diagnosed with it this last week.

Please don't forget to pray for them! They really need to be wrapped in prayer and encouragement! Thank you!!!

To follow their progress and to pray for specific needs here is their BLOG

31 for 21: #12 Patience

I did not start out to be a patient person. I am a do-er. I don't like to sit and wait. I crochet, I do not knit, because it takes FOREVER. I prefer to read, because I can read faster than the audio books can dole it out for me. I like to do individual sports, because I do not have to wait on someone else...

I had a temper unlike anything you have ever seen. I got into verbal fights faster than the proverbial gauntlet hitting the ground. I shouted at teachers (please don't tell my kids). I rankled under the tiniest wait. I would drive the long way around slow traffic, even if it took longer, because at least I was moving and I liked to feel in control.

Then I had my son. I slowed down a little, but all in all, he was happy to go along for the ride. So I had to learn to make some adjustments, but the speed didn't have to change much. He was SO big SO fast and very easy going. He slept through the night, hit all the developmental milestones, and was a Good Baby.

Then I had Elise.

Enter the mind-numbing oppression of the wait in a doctor's office. If you don't have patience, go deal with medical testing, the emergency room, and test results...you will either grow a mammoth lot of patience or your brain will explode. Then add complications and developmental delays and you will be stretched even more. Then, add a weird pre-cancerous condition that the doctors tell you WILL develop into cancer, they just don't know when, and sit that one out for a full year....Then once cancer presents, you are hit with the fact that there is never enough time...and waiting doesn't seem so bad.

In some ways having a child with developmental delays and mental delays is like running in nightmares where you run and run and run and don't seem to get anywhere...you are exhausted, but your feet are caught in mud and you can get no traction. In this situation, you have two choices. You can buck and say that this is not what you had planned for your life, and continue to run at your previous pace, wallowing and thrashing in the mud. Or you can celebrate the progression of tiny baby steps, and slow down your efforts such that you don't pass out from the strain, and actually make some progress.

I have been blessed by being in a Bible Study by Beth Moore on Esther. Today she made the point that "Our culture is training us in impatience."

We have microwaves, convection ovens, high speed internet, instant replay functions on out TV's, instant stream videos on our computers, drive through restaurants....the list can go on and on...and while these are very nice, they don't help you exercise your patience.

We can find out if our children will have health issues, and we don't even have to suffer that, resulting in more than 90% of babies suspected of having Down Syndrome being aborted (and who knows how many of other disabilities being aborted!) because it is not the life their parents had chosen to live...

I would not have chosen to grow this much patience, but I am very aware of the blessing that it is. I have grown to the point where I really feel sorry for young, crazy Me that sped through so fast that I missed SO much fun and really cool things in life. I didn't truly appreciate anything enough. I am sure that I will continue to be stretched and tested by God, but I am equally sure He will show me some even more amazing things. Who knows, I may even be able to take up knitting.

Monday, October 11, 2010

31 for 21: #11 Do What?

Okay, you know how sometimes you look at someone, and see their lips moving, and understand that you are speaking their language, but cannot comprehend what they are saying? And it is only later that the pieces fall together and you get it? And you realize that apparently you were having two different conversations...that somehow, there was a HUGE miscommunication...And you are thankful that you didn't quite understand, because you would have fallen over laughing?

That happened to me when I was pregnant with Amelia, my third. Elise was 3 and 1/2. And I had gone with my husband to his friend's birthday party. At this party I met several local politicians and their wives. I really enjoyed talking to one of the wives, she was very well-spoken, smart, and generally likeable...and we got to talking about my very obvious pregnancy and how many kids we had, and so on. It soon came up how my older kids were feeling about another sibling...Gabriel of course was excited, even though it was a girl...and I said that my daughter didn't really "get it" and she had special needs, so we weren't sure how she was going to handle being a big sister...and this sweet woman got very worked up about how I needed to take care of those special needs and that a pedicure with just us girls was just the ticket...and that I could make a monthly date to get a mini mani-pedi and that all those special needs would be met and she would be fine...WHAaaa? I was struggling to follow this conversation. I kept nodding and smiling and it wasn't til later that I realized that she thought that Middle Child Syndrome was the special needs that we were talking about!

The more I thought about it, the funnier this got...the idea that we could fix Down Syndrome with a well-timed mani-pedi tickled me to no end...It still gives me the giggles!

Well, I've tried it. And while Elise still has Down Syndrome, her tiny toes sparkle happily with paint...and we never had issues with Middle Child Syndrome! So maybe that lovely lady knew what she was talking about after all! :)

Sunday, October 10, 2010

31 for 21: #10 Dandelions

Why do I love dandelions? SO VERY MANY reasons!

I wrote about some of my love over at my other blog: Sticky Elephants



I LOVE this song by Five Iron Frenzy. I made sure that if the music was not your cup of tea, you can push mute on your computer and you can read these brilliant lyrics!! Dandelions

I have yet another reason why I love them: Elise IS a dandelion.

Babies with Down Syndrome are weeds to many people. Something to be torn out and discarded. Something to be stepped over. Something ugly.

In reality, they are flowers: they are bright, they can be ethereal, beautiful and full of hope...something to be treasured...something that in the right light, are magical and enchanting. Something that make the ordinary extraordinary...

Oh, and they can make a mess...a really big mess. :)

But, in a nutshell, I love dandelions because they embody hope, wishes and joy.

And so does Elise.

Saturday, October 9, 2010

31 for 21: #9 BOOKS!!

Elise loves books. She adores to be read to. She loves to read to her sisters. She will read to herself.

She happily reads board books, magazines, paper books, chapter books, and fiction with no pictures. That's right, no pictures. She started reading simple sentence, See Dick Run, kind of stuff this school year. It was SO exciting! But the oddity is that is all she can read. Ever since she was tiny she would read non-illustrated books all by herself, she would just look through them, for hours. It was like kids do with catalogues...they know that SOMEDAY, it will all be theirs....somehow, she knows those words have to have hidden magic, and someday it will be all hers!

As a fellow book lover this excites me! I admit to aiding this obsession. I read to her regularly...and some of it is over her head, but she listens, so I keep reading...and someday, she'll read to herself...I know it.

Friday, October 8, 2010

GRAB MY BUTTON! :)

EEeep! LOVE my button!!! Thanks to Abbe at All Doll(ed) Up for her giveaway and, most importantly, for Angie at Strosgirl's Designs for her BRILLIANCE!!! THANK YOU!!!! :)

31 for 21: #8 Rat Cook!

Elise loves to cook. (She was making brownies in the picture in the banner, can you see her joy?) I cannot take my eyes from her when I am cooking supper or she will step in as soon as my back is turned and mix or flip or pre-heat the oven.

She can crack eggs, she can mix, she can add ingredients and LOVES to do so. She pores over Southern Living and cookbooks...oohing and ahhing and smacking her lips...

This wouldn't be so odd if you didn't know that she doesn't like to eat...unless we are talking crackers. Really, if there is not bread or pasta or crackers then supper is a knock down drag out. She will oogle stew in a book, but if you mix up said stew, forget about her even trying it. It is the strangest thing!!!

We chalked up the eating thing to chemo for a long time (the chemicals that are administered can cause a long term effect on how things taste)...and it probably still figures in a little...and she still has a fair bit of sensory defensiveness, but the scope of what she will not eat is mind blowing. We are lucky that V-8 put out V-8 Fusion and that she will choke down pears and green beans other-wise we would probably be dealing in malnutrition. We have to sit on her to take vitamins...like I said, malnutrition.

Her favorite movie is Ratatouille. For those that don't know, the whole thing is about a rat who cooks and dreams of being a chef. Promptly following a rather obsessive period, she pre-heated the oven to cook some microwave popcorn. Whole house smelled like burning crayons. It took some considerable time to get the melted plastic wrap off the bottom of the oven and shelves. We DID find the oven lock mechanism shortly after this incident, THANK GOD!!!!

Maybe she will eventually eat some of her handiwork...and become a world famous chef, just like her hero, Remy the Rat.

Thursday, October 7, 2010

31 for 21: #7 The Future

This is a way cool video! Watch it if you have a minute!

It is a nice segway into what I was going to write about today...

Will I ever be an empty nester? I don't know.

I like to think so. When I get to see things like this, I am very encouraged. I hope so.

The older Elise gets...the more I wonder. When she was little, we really had no jumping off place, so I did my research, and for every person with Down Syndrome that lives at home forever, there is one that lives independently, with jobs and friends and responsibilities...it was exciting...and hopeful...

As the years pass...and she is just about 8 years old, operating on a 3 to 4 year old level, with a 2 to 3 year old speech ability...and less than a year's improvement, in a year's time (this year's IEP showed only 8 months in most areas and only 4 months in several, and they say that it will continue to slow over the next few years.) I just don't know. We have several friends who have kids with Downs right around Elise's age and they will sit and pay attention...or can walk independently through the parking lot...or can talk at a higher level...and I wonder...

I know that one of the side-effects of one of the drugs used in her chemotherapy protocol was some mental retardation...but as we have no base-line, we will never know how that figures in.

I have not given up hope. I am planning for Elise to have a measure of independence, no matter what. Even if she lives at home, we are planning for an apartment in the basement for her...and a job, even if I have to drive her to barns to scoop poop and curry horses or veternary clinics to brush dogs or Kroger to bag or childcares to scrub babies...or whatever...I have confidence that she will dream dreams and I will do my best to get her to them or as close as possible...

The current life expectancy of people with Down Syndrome is 55 years. I find myself hoping that if she has limited independence, that I out-live her. I don't want to have to ask my other kids to take on that responsibility...if she is very high functioning and personally independent, I will consider my prayers answered and will have a considerable weight lifted from my worries...

Gabriel, Amelia, and Charlotte are care-takers in personality. I don't know how much of this is because of loving and living with Elise, I don't know how much is an innate gift from God. I am thankful to see this, because I know that they would willingly step up, if it comes to that...

Elise loves to do things for herself and we have gone out of our way to make sure that she has opportunities and will continue to do so.

She adores to cook. She loves to read. She likes to feed the dog. She can set the table and clear it...and very few forks get thrown away...She lives with enthusiasm.

I am determined not to lose hope...and look forward to the day that I can tell her to "have a good day at work!"

Wednesday, October 6, 2010

31 for 21: #6 Scoop Poop

This is my funny Elise story for the week...because it is fun and needs to be giggled over.

Elise has hippotherapy every Wednesday. And has since she turned 3. Hippotherapy is therapy that you have on horses.

Elise has had one form or another of therapy every single week since she was a month old. Some for intervention to fix something, some to prevent something...feeding, speech, sensory defensiveness, strength, coordination, fine motor, gross motor, and so on, and so on....therapists have come and gone...but one has been with us for 5 years...Nolina.

Nolina first came with Gus. As a matter of fact, we still call hippotherapy "Going to See Gus"...Gus was a giant horse. He was 18 hands, minimum. This means his shoulder was about as tall as mine...and I am not a little woman...I'm 5'8". If you don't know what "hands" measure, they only measure to the horse's shoulder, then their neck and head are taller yet...He was a giant horse!! And Elise was only 3 and maybe 25-30 lbs...she looked like a tiny doll perched up there! But as afraid as she was of tiny pocket dogs, she loved Gus and would do anything for him...things that therapists had been begging her to do for 3 years! Nolina knew how to milk the Gus aspect, "Oh, Elise, Gus wants you to try...Gus would be so sad if you pitch a fit...Elise! Good job! Gus is SO happy and proud!!"

Gus got old and therapy got to be asking too much and he got sold to some folks that just wanted horses to wander their fields...the perfect job! The reward for carrying squirrly kids for years!

Then we met Ace. Ace totally gets Elise and seems to enjoy her as much as she enjoys him. A mutual admiration club. He is not as big but is still not even close to a pony...and now that Elise is bigger, she gets to curry him out before the pad gets put on him....and lead him to the mounting ramp. She enjoys this more than therapy, even.

Occasionally, Elise will buck and refuse to do the therapy activities. There are usually promises of rewards and of consequences. One consequence that was used on a little girl in the slot before Elise took ONE day to take. She was required to muck out a stall. It has never come to that again. The mere suggestion that her behavior may come to that and she pops to attention. So one day Elise had "A DAY" and Nolina required her to muck a stall and she LOVED IT! She thought it was such fun!!! She mucked out one, and then went to the next, and then the next...soon she was shopping with the wheel barrow all over the barn hunting "Poop" to scoop with the shovel! It became painfully clear that it was not having the same effect as on her friend! SO! Now it is her reward for making better choices! "Elise, if you are good and work hard, you can scoop poop!"

So, on a great day Elise will skip out of hippotherapy trilling that she got "to Scoop Poop!" and grinning with joy!

Elise's American Girl doll, Kit, has a helmet and a horse and she gets therapy too. The thing that cracked me up a few weeks ago, was that I overheard Elise telling Kit to be "good" and she would get to "scoop poop!" It was awesome! :)

Hippotherapy has been a God-send for Elise. She works SO hard for her horse. It has had a miraculous impact on her sensory issues! It has strengthened her physically, and improved her work ethic and attention span. She loves it and I cannot say enough good things!

But who's to say that "scooping poop" hasn't had it's own impact? If you have a barn that needs cleaning, give us a call!!! I know a girl who'd be your best friend forever...

Tuesday, October 5, 2010

31 for 21: #5 Angels with Dirty Faces

Hmmm.

I love Elise. I am sure that by now you have seen this. I just wanted to clarify this before I write this one.

Elise is no angel. For one, I'm pretty sure that angels don't hit people and spit at them on a regular basis. I am also very secure in the fact that if someone is afraid of an angel it isn't because they are fearing a kick in the teeth.

If Elise is rough in her showing of affection (her "drive-by hugs" will just about unseat all but the burliest of men), then she is pretty stringent in her showing of disapproval. There will be ABSOLUTELY NO QUESTION if she dislikes something.

I have a somewhat "off" take on the use of "retarded", and I also take issue with the generalization that all people with Down Syndrome are loving, mild-mannered, long-suffering, "angels". (I can be taken out back and shot later...) But my baby girl could not pass as an angel unless she was asleep. I'm serious. I adore her and treasure what she has shown me, and I truly believe that she has brought real-live angels into my life, but pardon me if I insist that list does not include her.

Elise is on the green light at school on Mondays, apparently refreshed coming off of the weekend...and then the behavior chart takes a nose dive...Yellow, to Orange, to Red. Her teachers added Orange to the behavior chart because Elise was blowing through it too fast...and they wanted her to have more chance at success. (More on that another day!)

If we as parents don't want the negative stereotypes applied to our kiddies, I would like to add the "positive" stereotypes may not apply either. They're just kids after all! They are all different. They may have blue eyes or brown, they may look like their mama or their daddy...They may show one or many of the physical manifestations of their diagnoses. They may love princesses or baseball...

They are not angels or monsters...they are just kids...

Monday, October 4, 2010

Banner!

Don't you just looove friends who can do ANYTHING???

Thanks to Lynn for another perfect banner!!! Wow! :)

31 for 21: #4 Heaven

When I was little, I was afraid of choosing the wrong man for my husband and childbirth. I worried and worried. After church one day, when I was like 4 or 5, I concluded that I would wait until after I went to heaven, because I would be sure that I had chosen the right man, and childbirth would not hurt.

When I got to be about 15, I heard in church that there would be no marriage or childbirth in heaven, that we would only be praising God. I started telling God everyday that He would be returning "today" to assure that He would not be returning that day, because of the verse where it said, "no man knew the day or the hour" of His return. And I figured if I "knew" that he would be returning that day, then I could buy out time until I got married and had kids. And I really wanted to be married and to have kids, really my only goal of success...and I was afraid that I would miss out.

When I finally found the man I wanted to marry, I had matured to the point that I realized that if heaven had no tears, then there would also be no regrets. And I was okay, with reservations, about going to heaven with my "plans" uncompleted.

Then I had Elise. And I realized my plans were shaky at best. Then she had open heart surgery, and I realized that my plans were laughable. Then she got cancer and I had to send my son to live with his grandparents on rotation while Elise underwent treatment...and I realized that plans were utterly stupid...and that heaven would be lovely...

(Disclaimer: I am not suicidal. I love life. And more specifically, I love MY life.)

While Elise was on chemo, I realized how ugly and awful life really was. Over the last 6 years, many of the children who were on chemo at the same time as Elise have lost their battle. One very dear family lost not one, but two precious girls to a very aggressive hereditary cancer. I have met many people who fight all manner of nasty medical battles. I have many friends who struggle like myself with the day-to-day disabilities... Children who will be dependent forever. Children who will be babies forever. Children who will die slow and painful deaths because their bodies will gradually fail them.

Compared to heaven, this is such a dark place. It is not as it should be. God did not want this when He created us. He wanted us to stay in Eden. Even after our sinful choices, He gave his Son to restore us to Him in heaven. He loves us that much!

If I have learned anything from Elise in my life, it is that the beautiful moments are not rights, they are are daily gifts that God gives us to remind us that heaven will be wonderful...that He totally knows what's best! That the dust motes that frolic in the sunbeams are mini miracles...and are a glimpse of the beauty of the jewels and gold in heaven...

I have gotten to the place in my life where I crave heaven and what God has planned, where I truly look forward to it. I no longer fear that I will be bored and will be missing out if I don't get to do what I want here on Earth...I look forward to see the MORE in Elise, what she will be like without this life on her. I look forward to seeing heaven on my kids and my husband...I can hardly wait to feel the complete love and joy and perfection that He has in store for us! It fills my heart with joy and excitement...no longer the desire to hold onto my stupid "plans"....because now I know better...and it's because of the path through "the valley of the shadow"...I'd take it again in a second for what it has shown me...because I now know that He is MORE...More EVERYTHING then we can comprehend...

Facebook Fix, I Think

I fixed the Facebook Link on the side, I think. It should link right over the Facebook page, now!

Last night, a thread was added in the Discussion tab for you to link in your blogs or those that you have read that moved you! Down Syndrome or any disabilities are welcome, just keep it clean and appropriate.

As always, there is a thread to volunteer for guest blog posts or ideas for posts...anything is fair game...ask away!

The email route is also always welcome! Underwater9800@gmail.com

Saturday, October 2, 2010

31 for 21: #3 Oh, NO!

When Elise was 2 ish, we had already had failure to thrive, cardiac failure, open heart surgery, thrombocytopenia, AML (leukemia), and had "wonky" thyroid issues...we were getting jumpy.

And then IT started happening! Suddenly, Elise's beautiful eyes would start to glaze over a little, and she would put her arms over her head and start to sway like a dandelion in the breeze.

Oh, NO! She's having seizures! She has started regressing! She has autism! The chemo is attacking her brain! THE FEAR !!!! ANYTHING started sounding possible after the previous 2 years...

And then I took it down a couple of notches from crazy and realized that she was not having neurological issues...and maybe she was watching something...and maybe that something was her shadow...

That was the beginning of Shadow Baby. Elise adored to dance and play with Shadow Baby...the dances and celebrations!!! Oh, it was SUCH a party!

I miss Shadow Baby! She was such a polite and clean friend...she never pitched fits and was so quiet!

Shadow Baby has grown a great deal over the last 6 years! And she does come over and play in the yard with us some sunshine-y days! I believe that she will be a very faithful friend for years to come!

31 for 21: #2 NOT a Life Half-Lived

Elise will not be attending the Princess Tea tomorrow. Amelia will be going to a Princess Tea, complete with a Ball Gown and china tea cups...it was supposed to be a Grandma/Granddaughter Tea.

I feel a tiny bit guilty that Elise won't be attending. She will not completely miss out. Her grandmother will be doing something special with her another time. It's just that "Bull in a China Shop" doesn't begin to cover it. She hates tea. Won't drink it. Hates tiny sandwiches. Spits when she doesn't like things. Has no tolerance for princess gowns...likes them for only about 30 seconds. Insists on running, hates shoes, and tends to break things...and tends to strip when uncomfortable. See? No tea party=good idea.

Elise runs wide open. All in or all out. She is emotional and strong and confident. There is no shy violet...she knows what she wants and goes for it...for good or ill... There is never a lost opportunity...hers is NOT a life half-lived!

I want to be like her when I grow up.

Friday, October 1, 2010

31 for 21: Down Syndrome Awareness

I signed up for 31 for 21. It is for October being Down Syndrome Awareness Month. The theory is that we raise awareness for Down Syndrome by blogging about our life each and every day of October. 31 being for the 31 days of October, 21 being which chromosomal "pair" has the extra chromosome. It may be too much information, but I look forward to see what strikes me as important each day!

My first post will be about Gayle.

We did not know that Elise had Down Syndrome before we had her. In retrospect, they should have caught it. I remember a lot of red flags that should have been connected, but I am glad that they dropped the ball. I have said many times that Down Syndrome as a disability is daunting, but a baby is just a baby.

When we had her, she had some of the characteristics, the tilt-y kitty cat eyes, and very short little fingers, such that they were suspicious that she had Downs.

My OB doctor just about cried when he told me. He even had the gall to tell us that there are many people out there who would adopt "a baby like that", if we decided that we didn't want to do "this".  I am still mad at his reaction. He could have told us with more congratulations about the healthy (we thought at the time) baby. How beautiful she was, how she would be a blessing. I think that if we had known beforehand, he would have been one of those doctors that would have encouraged an abortion. Statistically, at least 90% of babies who are prenatally diagnosed with Down Syndrome are aborted for the belief that they will "have a poor quality of life." I think those decisions are made because of fear. I don't know a single child with Downs that is not a blessing and that does not Enjoy Life....they have low days, like all of us, but over all life is full to bursting.

My nurse however smelled like Johnson & Johnson's Bedtime Lotion...and had the same sweet spirit. Her name was Gayle. She gave us a copy of a beautiful devotional that she photocopied...she said that she had read it that morning and thought of us...I still have it. She also asked if we would want to hear from other parents with babies or children with Down Syndrome. I said yes, and she had someone there that afternoon. I was shown pictures of a pretty little girl of 4 years old playing, going to dance class, and having a normal life. She brought with her hope of some semblance of normal...

Gayle told us how beautiful Elise was and oohed and ahhed over her gorgeous eyes...she was a balm to our spirits...

I called the hospital about 6 months later and there was no Gayle on the floor. I called every single person in the phone book with her last name and never found her. I still think she was an angel...at the very least she was the first of a whole host of gifts that God sent to bless us with our Elise.

She brought joy. I will always be thankful for her.