Blogging about life and raising our five kids with Down syndrome.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, October 24, 2007

Many hats

Like many moms, I wear many hats. Household engineer, chaufer, pooper scooper, etc. One of my other hats is psychiatric care nurse. This is an old post I wrote 2 years ago, shortly before my son turned 17. A friend of mine asked if I would repost it, which I am with permission from my son.

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If you don't yet have kids of your own, I want to warn you...you need to go back to school! If you already have kids of your own, start taking night classes. You should be focusing your new training on a masters in psychiatric medicine. That is because as a mom, nobody tells you that you need to be prepared to deal with these kinds of issues...just in case.

My 16 year old son has, among a long list of other things, schizophrenia. When you go in your child's room and you find that he's writing letters to the "sleep demon" voices in his head....honestly...it will instantly make the hair on the back of your neck stand at attention.

I bet nobody has told you there may come a day when that beautiful baby, the one who greeted you with huge smiles in his crib each morning, would one day threaten to chop you into tiny pieces as you slept.

I bet nobody has told you that little boy who was so proud of himself when he learned to take those first steps would one day use those same feet to run away over and over again, leaving you at home to worry in the dark. Is he cold? Is he hungry? Is he alive? Did he finally find the bridge he's been talking about? I bet nobody has told you that some kids attempt suicide at a very early age, and that when they go to bed at night you don't know if they're going to get up again in the morning.

I certainly never thought my morning ritual would include the emotions it does now.

Each morning, when it's time to wake my son up for school, I stand outside his bedroom door willing myself to open it. I open it slowly, holding the knob firmly to have something to hold onto should I find the worst.

Because of the angle of his bed and the way he sleeps, his foot is the first thing I see every morning, and every morning the first thing I check for is the color of that foot. Is it blue? Grey? Does it flinch if he hears me?

I step around the tall dresser that is right by the door, too see if his face is showing as he usually sleeps with it covered. If I can see his face, I wait before I say anything. I want to see him......its the only time he is at peace...when he is sleeping. Sometimes if I look closely I can see the baby he was 16 years ago.

But most of the time I can't see his face so I'm forced to say his name. Softly....I say it softly...I want him to remember my voice is not always harsh and frustrated. Sometimes it is soft and loving...."Tyler....Tyler...." I hate that he doesn't hear me right away. It adds yet another moment of fear. "Tyler, are you awake?"

The moan of a sleeping teenager brought back to consciousness is music to my ears. But I'm not out of the woods yet. I have learned.... from a very difficult experience of course... that the "moan" can mean he's so drugged from an overdose of something that he's unable to speak, and that I have just minutes to call an ambulance.

I have to get him to talk.

"Do you have anything going on after school today?"

His answer, though mumbled, lets me know all is right for the moment, and I can go on with the rest of my day.

Unfortunately, I have been known to let my guard down too soon, like today. No, he didn't try to hurt himself. Instead he threatened to hurt me. To put an end to MY suffering. With eyes clearly possessed by something evil and very foreign, he stared me down and dared me to challenge him. Instead I locked myself in the bathroom and called the police and an ambulance to take him away.....again.....

What I would give to have that smiling toddler standing in the crib waiting for me. What I would give for that.......

.................

My son went on to spend a year in a secure psychiatric facility learning to live with this disease called schizophrenia. A year of phone calls "They're killing me! You abandoned me here! You're the worst mother in the world!" to be followed the next day with "I understand why I'm here. This is the right place for me and I'm getting better." The cycle is vicious and difficult for everyone involved.

He'll be turning 19 in just a few weeks. He no longer lives at home. He does have a job and talks about finding another. He has the same hopes and dreams that every other 19 year old has. As is common with schizophrenia, at the moment he is "well", but can at any time swing into the world of intrusive thoughts and delusions. He's trying very hard to live a normal life, and I'm very proud of all the hard work he's put in to get where he is.

Update 2009: My son's life continues to cycle through good and bad phases. He's turning 21 next month. In the spring of 2009 he attempted suicide, and almost succeeded. Found in a puddle of blood, he was taken to the hospital where he stayed for several days. We were able to convince the courts to order a 6 month commitment. During this time he's been through both drug and psychiatric treatment. His commitment is over soon, and he'll be on his own again. So far he's taking his meds, which allow him to stay in this world (both physically and psychologically) hold a job, and get along with people. He calls me a couple times per week just to check in. I love that! I pray for him every single day, and remind myself God loves him even more than I do.

Update 2010: My son is doing very well right now! He's holding a job for the longest ever (4 months!) and living in a townhouse he rents with 4 other adults he rarely sees. Something that is good for him. Right now, life is good, and we hold on to the good times with everything we have!

Tuesday, October 23, 2007

Hate words

Most who know me also know that if they use the "R word" around me, or any derivative of it, I'll probably say something about it. I may, or may not, be nice about it, depending upon my mood at that particular moment. Some people I know, even family members, think it's silly for me to be irritated about it. "It's just a word...figure of speech, I don't mean anything by it." I even had one family member call her own son that, while Angela and I stood right there. Still...they think I'm overreacting.

No..I'm not. When you use that word, you're using my child as an insult. You're saying to be like her is a bad thing. That whomever you're calling a "r-d" surely would never want to be like Angela, or any other person who carries a MEDICAL DIAGNOSIS of mental retardation. That, my friends, is some incredibly insensitive thinking.

You wouldn't call people a "n-word", or a "fa**ot", or any other socially unacceptable slang term because you know they're wrong. They are words that can get you fired from a job, or sued for racial verbal harassment. Yet the "r-word" lives on. It's sickening.

Imagine my child walking through school. She will never hear one of her classmates call their friend of color a "nigger, and in her extremely racially diverse school she'll never hear someone call a friend from the middle east a "towel head", but it is EXTREMELY common for her to hear someone walk by and refer to each other as "retard".

Why is this ok? Why is it ok for you to model it for your children and why is ok for your kids to do it at school? Why is it ok to have what my daughter is be the butt of a joke every day of her life.

You may say, "Oh get over it. Grow a thicker skin." But if you're one of the people who use that word, what will you do the first time you hold your own new baby with Down Syndrome? Or your new grandchild, niece or nephew? Or you meet your boyfriends brother with Down Syndrome. Will you still use it anyway, regardless of how hurtful it is? Will you tell your own child "Grow a thicker skin child! You're going to be hearing this your whole life!!!!"

My child doesn't need to grow a thicker skin. She's been through more in her short 11 years than most adults will go through in a lifetime. What she needs is for people to be as respectful of her as they are of those of color or different religions. After all, the only difference between her and you is one tiny chromosome.

Now a world leader has chosen to add this word to his vocabulary. Read on

Sunday, October 21, 2007

If you're a blogger

If you're a blogger, and you come here frequently to read, then I know you're enjoying my blog. If that's the case, would you mind asking YOUR readers to go vote for me? I'm now #25 out of out of 215 in the contest, but I have a LONG WAY TO GO to catch up to the leader by December 31st. I'd sure appreciate the support! Send them here
http://www.blogforayear.com/profiles/leah You can vote once a day, every day until the end of the contest. I have a friend who's in an office of 30 something people, and every day she sends out an email "Ok, time to vote!" and whoever wants to clicks the link to vote. What a great group of people! THANKS GUYS!!!

Missing

I knew it would only be a matter of time. Just when she's getting used to them, POOF! They're gone. Have you guessed what I'm talking about? You got it! Angela's glasses! When we bought them the guy at the optical shop tried to talk me into wire frames, but we've been that route before and I told him, "No, they bend too easy, even the Flexons can only be bent back so many times. This time I'm going with plastic. At least when she throws them they won't bend!"

I suppose it was my fault really. After all, I told her she was going with Dean to watch him bowl while I took the dogs to play rehearsal, but later I told her plans had changed. Instead of watching Dean bowl, the two of them would be staying home. I should add to Angela's list of "21 things" that "Changing plans is a bad idea."

She was in the basement living room with Dean who was busy making phone calls for work. I tried coaxing her upstairs with things like, "I'm going to make dinner, I'd love some help!" (she loves to help with dinner.) But Angela wouldn't be had. Flat out telling her to come upstairs would turn into an 85 pound flop-n-drop and I just didn't feel like going there at the moment. Instead I brought the dogs upstairs with me so that her usual targets of misbehavior were out of the way while Dean tried to make phone calls.

A few minutes later I heard, "YOU GO UPSTAIRS NOW!!!!!" as she came stomping up. She stomped all the way to her bedroom and did a classic adolescent flop onto her bed. Within a couple minutes she was noisily chewing on her finger so I figured she was going to fall asleep. I knew having her stay home with Dean was going to be pushing both their limits, but I also knew that sitting at rehearsal with me for four hours would be tempting fate! Still...the thought crossed my mind. She LOVES to watch rehearsal and normally has no problem sitting and watching, but the mood she was in had me feeling little gun shy.

As I went through my mental debate, Angela came out of her room. "Mom? I go with you...please? I watch Horton put dust on the flower?" (this is a scene from the play and she has a crush on the teen boy playing Horton) I was ready to tell her yes, when I turned to see there were no violet specs on her face.

Me: "I suppose, but you have to put your glasses on first."

A: "I throwed 'em"

Me: "Well you better go find 'em. You won't be able to see Horton without them."

Angela disappeared, coming back a few minutes later, "I'm not finding my glasses."

Off we went together to search for the missing glasses. She'd had a friend over earlier in the day, and the room that had been spotless only hours before was now strewn with baby dolls, dress up clothes, and pieces to various occupational costumes like binoculars for search and rescue, stethospopes and therometers for the doctor, and of course the army guy costume.....sigh....no glasses that I could see. She said she was laying on her bed when she threw them, so I tried laying there to check out the possible trajectory of the flying glasses. I never found them, and she did indeed stay home with Dean. She was very sad about it, something that doesn't usually happen with her. Angela rarely cries real tears, so when she does I know she honestly feels bad.

On Friday night she did go to play practice with me. She spent the whole time rubbing her watering, straining eyes. Poor kid! Where are the GLASSES?

I have looked everywhere, I have cleaned out the room. I can't find them. If you're a praying person, please say a prayer that the missing glasses appear before my eyes! I'm thinking she had to have ditched them BEFORE she got to her room that day, but where? UGH! Our house has too much stuff in it, and they will easily blend into the dark corners. I sure hope I find them tonight so she doesn't have to go to school without them tomorrow!

Saturday, October 20, 2007

100 miles down Memory Lane

Note: most of the names, save 2, have been changed to protect the privacy of former friends and neighbors who probably don't even remember that I existed.

It started as an ordinary Saturday. Me running Angela to swimming, then dropping her off with her dad. On the way home I thought, "hmmm...an empty house, just me and the dogs...I think a nap is in order!"

I pulled in the driveway, parked the Tahoe and yawned in anticipation of my cozy bed. But as I walked past the closed garage door I heard it. The quietest of voices saying, "Hello. I'm here. Have you forgotten me?"

It was my bike. I realized what a glorious day it was outside. The sun was shining, and it was just plain pleasant, with an unusual temperature for October in MN of 70*. Suddenly I was no longer feeling nappy. Suddenly I was wanting to get on my bike and feel the wind in my hair again.

But where? Where would I ride to? I tried calling a couple in-laws who live nearby and ride, but they weren't home. (probably headed out early on their own ride!) When I ride alone I prefer to stick with roads I know, so I felt comfortable with my choice of riding out to the home where I grew up. The ride to Medina would take me through my old stomping grounds, and down twisty winding roads around Lake Minnetonka. PERFECT!

As I traveled the back roads of Wayzata I was reminded of long ago dates to the movie theater there, our high school hockey team's defeat of the Wayzata Trojans on their turf with all our faces painted in colors of the Orono Spartans. I could still feel the energy on that street. Ahhhhh...that was a fun night to remember.

Fernbrook Lane...thick with trees in yellows and oranges, most of it houses built by my Dad's company in the late 70's. There on the corner is the house of Lt. Mosh. I met him in my Army Reserve unit when I was 18 and had a huge crush on him. Hmmmm he was F-I-N-E!!! He was also way out of my league. LOL He was one of those "Wayzata Kids" who always seemed a bit stuck-up to me.

County Road 6...turn left. A beautiful country highway straight out of magazine. There's the house of the Chinese Dr. Once in High school I went to a party there. Well I intended to anyway. Just as my friends and I got there the cops crashed the party. Bummer! I'd heard there was an indoor pool and wanted to see for myself!

Tamarack Drive...Wow, the trees have grown so much you can barely see any of the houses. There's the house of Jim Lane, and just a few doors down is Ace's house. Jim and ACE were in some type of accident right out of high school, and I heard Jim's now a quadriplegic.

And the From's house. Their kids and I were in homeroom together in middle school when their mom committed suicide by driving her car into Lake Minnetonka. (A few year's later she'd be followed by the mother of another friend of mine.) They continued coming to school for several years, but those boys were never the same. I wish their Mom would have understood what her suicide would do to them.

Fortuna Farm...the place I spent years taking riding lessons. The buildings are quite a ways off the road, but but even from here they look run down. There are horses in the pastures, but the fences look barely able to contain them. Yep, there's a "For Sale" sign. That place will fetch a pretty price, I'm sure. 50 or so acres in horse country in today's market. I'm sure within a year the outbuildings will be gone and there will be a huge mansion in their place. I suddenly realize how far I am from my childhood home. A good 2 miles at least. I used to walk here every Saturday for my riding lesson. The roads only had 1/2 as many houses on them at the time, it was mostly just alphalfa fields. Wow, that's a long walk for a little girl!

A mile further...The Condon's...they were the first family I ever knew with 4 kids. Not only that, they were all girls. Their mom was of Spanish decent and the house was sorta 70's Spanish architecture. I loved going to that house! For one thing, they had a Shetland pony named Star who I could ride whenever I wanted. I loved their girls. By the time they moved in my brother and sister were getting ready to graduate high school, but I was only in 3rd grade or so. Their house was lively and full of girlie stuff. It's their mother who gave me the idea of a "Sunday Box" when I had my own kids. At the Condon's house, if you left something out, say your favorite Barbie or your diary, it got put into the Sunday box and you couldn't have it back until the following Sunday!

Medina Road...this is the road. There's the Brown's house. I never understood that place. Probably the most run down shack I'd ever known as a child, yet they owned what is now the biggest garbage company in the state. There was money there, but no evidence of it. They were also the kids I wasn't supposed to play with but I did anyway. Looking back I know why, but as a little girl I didn't understand.

Across the road is the Romfo house. Well, the driveway anyway. It's a very steep hill and the house sits far back out of sight. They had two boys, and I remember playing at their house all the time. They had a Boxer named Brutus and lots of horses. I played there all the time since for many years they were the only kids in the area my age. Shortly after I graduated from high school they sold the house. Only their teenage son forgot, and came "home" drunk from a party in the dead of winter and couldn't figure out why he couldn't get inside the vacant house. The next morning the new owner found him frozen in a snowbank. I heard he ended up loosing his hands and feet. Later I would babysit the kids of the new owners, and then the house burned down. The driveway still looks very vacant, and there is no mailbox, so I guess nobody rebuilt back there. (edited to add: I had most of this story correct. Here's article I found about Scott Romfo who was frozen to death and brought back to life.)

The Rasmussens...now THEY were people to get in trouble with! They had one girl and a few boys, all older than me, but I hung out with the daughter. I remember when her mom had a surprise pregnancy. She was VERY OLD..like FOURTY!!! LOL Funny how we perceive things as a child.

And just up the hill, there is our driveway. You used to be able to see the side of the house from the field, but the trees have all grown up. It's only been 6 years or so since Mom and Dad sold it, but I don't remember those trees being so full. I stop at the top of the driveway, suddenly aware that this might bother someone...a chick on a bike peering through the trees at the home below. It occurs to me that my impression of that house growing up was probably very different than of other people's. I remember going to the homes of some of my friends, like the Condon's, and being impressed by their houses. Yet here is the house I grew up in, that when my parents finally sold it was well over 6,000 square feet. I wonder what my friends and their parents thought of our house? To me it was just a house.

From here I can see the corner where I wiped out on my bike when I was 7, getting entangled and stuck until the Romfo's mom found my laying there sobbing, bloody and bruised. The same corner where I made friends for life with the Hind girls that moved there in the 5th grade, and moved away again in the 8th. I put my foot down on the driveway, the same driveway where I learned to ride my first two wheeler. This driveway where I stood every school morning for 12 years waiting for the bus that I can still smell.

Sadly, today I can't really see the house, the trees are still too thick with leaves. But I realized that while I set out to see THIS house, the memories I was searching for were in all the houses along the way. They were in the trees that hid my brother, sister and I as we threw tomatoes at cars. They were in the fields where I rode my horse first as young girl, then later as a teenager to visit my boyfriend. My memories were in the very twists and turns that my body still remembered. I was coming to see a house, but instead I found so much more.

Friday, October 19, 2007

21 things

A few of the bloggers in the Down Syndrome community are doing "21 Things" posts. 21 things about their child with DS in honor of the extra 21 chromosomes they're blessed with. Thought I'd give it a shot as well.

21 Things about Angela.

1. Angela has amazing dark brown eyes that sparkle. Sometimes with excitment, and sometimes with mischeif. It doesn't matter though, because they're beautiful eyes.
2. Angela's laugh can make anyone laugh right along with her.
3. When around a new group of people, Angela has ALWAYS finds the one person who's always thought having DS is a bad thing, and within minutes changes that person's mind.
4. Angela has more friends than I can keep track of, partly because some of them are invisible.
5. Angela will only wear shirts with stripes. This is kind of a new thing, but I have feeling it's hear to stay for awhile. At the moment she's wearing a boys striped Rugby shirt.
6. Angela prefers to wear TWO shirts at one time, no matter how warm it is. Now that they both need to have stripes I'm having issues in the clothing department again.
7. Angela's favorite TV show is "The Suite Life of Zach and Cody." with her favorite being "Zack" who is the brother that's always in trouble on the show. Go figure.
8. Angela will be going on a "Make A Wish" trip sometime in the next few months. We'll be traveling to Disneyland to meet...who else? Zack and Cody.
9.Angela sleeps in a hospital bed so that the head can be raised as necessary so that her her esophagus doesn't collapse. It also makes it easier to play doctor when her friends come over.
10. When Angela goes to bed at night, she wants me to tell her a story. I have an ongoing story about "Princess AngelINA" and her adventures. Magically those adventures are alot like the ones Angela has each day, and the choices Princess Angelina has to make each day. Sometimes I'll ask Angela, "So...what should our Angelina story be about tonight?" and she'll come up with something that happened at school that I didn't even know about. Tricky huh?
11. Angela absolutely loves our dogs. She loves being a dog trainer and does a very good job of it. When the dogs are tired of being trained by Angela they go lay in their kennels as if to say, "Please...please come lock the doors for us!"
12. Angela has recently learned how to make pancakes, and is now obsessed about cooking meals. A couple days ago I bought her a kids cookbook that has simple dinners that she (and I) should be able to prepare. I'll be honest in saying I have ulterior motives.
13. Angela dreams of being in the theater. This is a new thing that comes from watching play rehearsals with the dogs. I think this summer I'll have her audition for the children's theater so she can have a turn at the spotlight.
14. Every morning, at 4:30 a.m. when Dean gets up for work, Angela goes to the kitchen to say good morning to him. Sometimes he doesn't know she's there because she's standing quietly watching him. (although if he listens he can hear the freight train breathing around the corner!) Then she gives him a hug, and runs to our bedroom to take his spot!
15.Angela's passion in life is to have jobs. She is happiest when there is a task at hand that she's able to complete. Weather its putting a load of laundry down the chute, getting the mail from the mailbox, or emptying the dishwasher. And DO NOT try to help her, or you'll be very sorry!
16.Angela never stops talking. Ever. I mean it. She talks all night in her sleep, sometimes even breaking out into this hysterical full-belly laugh. When her eyes open she lays in bed rehearsing her schedule for the day.
17. Angela loves schedules. She wants to know, "What are we doing tomorrow?" You're not allowed to say, "I don't know." You have to say SOMETHING like, "staying home all day." though sometimes I answer with things like, "We're going to pack a bunch of suitcases......(excitement showing on her face)....load them in the truck...(she claps in anticipation)...and fly to the MOON!!!!!" She thinks this is a fantastic joke and never tires of it.
18. Angela loves dressing the dogs. She just finished putting a doll dress on Dudley's nose.
19. Angela hates writing, until now. Her new OT made her a splint which just so happens to resemble a cast, something that Angela has always wanted! Now she wants to write all the time!
20. Angela adores her big brothers and misses them very much. When they come over I'm not allowed to hang out with them. As far as she's concerned they're here for her and her only!
21. Angela's favorite song is, "You got a friend in me." And she's right. Angela is a friend to all!

voyeurs

I know there are some who read here for the sole purpose of getting an inside scoop on things going on in my life. Like they will find out something about me I don't want them to know. (which is kinda funny, since I wouldn't put private information on a public blog! DUH!) I have opinions, and sometimes they're not very nice, and they may not agree with yours. What I think is hilarious is when people (mostly ex family members) email me and say things like, "I want you to remove...." But you see, this is my blog. That means everything written here is from my perspective. It's what I believe to be true without being slanderous. If you don't like it, go start your own blog and write whatever you want. That would be your blog.

Life's little disappointments

I've always made sure my kids learned how to handle disappointment. There are times in everyone's life when things just don't work out the way you wanted or expected them to. Maybe it's not getting to see a friend you wanted to see. Maybe it's vacation plans that didn't pan out. Maybe it's a marriage that failed. Maybe....maybe it's your own parents.

Sadly, this is what Angela experiences nearly every weekend she's supposed to go with her dad. Since we separated in the spring of 2002, I cannot even count the number of times he has either

A. not shown up all together because "My truck broke down" (it has "broken down" no less than 20 times since our divorce.) or some other similar excuse. I bet if I'd kept track over the year, there would be no less that 20 flat tires, 15 blown radiators, and countless unexplainable ailments to whatever vehicle he's driving at the moment. It's sickening. But it's not new. When we were married had had a habit of not coming home when expected for all the same reasons. It wasn't until later when I unexpectedly ran into him somewhere he wasn't supposed to be that I realized what a horrible liar he was.

B. Shown up a day late to only spend HALF the weekend with her because...well...he's too busy, has a Dr. appointment, can't get off work, etc. Ok, the Dr. appointment thing irritates me. I wonder when was the last time *I* went to a dr. appointment without Angela? Good grief, she's even coming with me for a MAMMOGRAM next week!

I'm so tired of it. It's impossible for me to make any plans. When I do, they get canceled because of his problem. Tonight is yet another example of how I have to scramble to figure things out because her dad is...as usual..undependable.

Most of all, Angela is tired of it. The last time she went to her dad's, the night before she was crabby about something. Now, a long time ago I stopped telling her about Dad coming until I knew he was on his way. You know, that who dependability thing. Anyway, this particular night I said, "Hey guess what? Tomorrow Dad is picking you up!"

Angela looked at me, stuck out her bottom lip, crossed her arms and said, "I'm not go to Dad's. I'm not wanna go."

I've never seen her act this way before. I was careful not to feed into it knowing it could easily become a habit for her to react this way. I didn't ask her why, or anything else for that matter.

The next morning I told her "Dad is going to get you off the bus today!" (while inside I was a panic..what if he doesn't show up again, and there she is home alone???) Angela, who had been happily trotting down the driveway to meet the bus, stopped in her tracks. She turned, and in an exasperated tone asked, "Why? Why I go my dad's for?"

"Well, because you haven't seen him for a couple of weeks. I know he's excited to see you. I bet "D" will be there. (the new girlfriend who Angela seems to like.)

In a monotone she replied, "Oh..ok. I see "D". Not Dad though....Just 'D'. "

UGH!!!!! Now, I know that when she actually did get off the bus that day and saw her dad waiting for her she was excited. But why this other reaction? This is the most difficult part about being a parent. When you're divorced and your kid doesn't want to go. My boys did the same thing but they were a little older and had lots of friends to hang out with on the weekends, vs. Dad's where they were kinda bored.

And don't think there aren't red flags waving in my face every day about this issue. But for now, Angela associates her dad with a few good things (fishing, dinner at grandma's, and connections to her brothers) but also to constant disappointments and let downs. I can only shield her from so much. He is who he is. I haven't told her that he was supposed to come tonight, and I haven't told her he's coming tomorrow because chances are good that he won't show up. It's sad that he doesn't understand that like his other kids, he's slowly causing his relationship with Angela to deteriorate. Each disappointment caused by him decreases her trust in him.

For those who read my blog and email me about what a great person I am, how "forgiving" I am, and all those other endearing qualities, I can tell you this is one area where I fall well short of what God would would want. Sometimes after a phone conversation of "I can't be there this weekend...my truck broke down" I hang and say really bad things and think really bad thoughts. I am so angry!!!! This is one area where "a good Christian heart" does not describe me. I can't stand a person who will hurt my child weather it be physically, emotionally, or spiritually. I have no patience. ZERO. It was gone the day I walked out the door.

Wednesday, October 17, 2007

Special Oh-yimpicks

This was written by me awhile ago, in a combination of "Junie B Jones" style, and the way Angela really talks. Anything that's in " is the way she really says it, and words that are spelled phonetically are done so because that's the way she pronounces them. It's fun for me to put myself in her place once in awhile, and try to imagine what is going through her mind when we do things.



Hi! Last night I went to backicksball. It is fun and is Special Oh-yimpicks Backicksball. I watched the clock for when it is time to go. I said, "MOoooom! It is time a go!" and we got ourselves right into the van to go. When we drive there I like to watch the red and green lights. Sometimes I don't think that mom can see the red light change to green, so I tell her good and loud! "Mooom! GO already! Iss is green and that means GO!" Did you know you have to watch those lights very careful because sometimes they are an arrow and sometimes the are a circle. When we go to backicksball we have to have a green CIRCLE! The cars who are next to us have to wait for the arrow. Sometimes I tell them when it's time to go too. It's a good thing they have me to remind them.

When we get to backicksball we have to run around the gym. This is called warming up and Coach says it is very portant for muscles. Mom does not do warming up. She talks to Carly's mom instead. When I run around doing warming up I like to run with Chris. He is very old...maybe like about 20...and he looks just like me. There are a lot of kids at special Oh-yimpicks that look like me. Mom says they have Down Sinrum just like me. I don't know what that is, but I guess that means they look just like me and like backicksball too.

When warming up is done we do dribbing. Dribbing is when you push the ball and make it bounce off the floor right back to your hand. Only my foot keeps getting in my way and my ball bounces off my foot and then it goes in Chris' way instead of my way. That is called a pain in the neck and it bothers me. It makes me want to growling at the ball. Sometimes when I get mad at the ball I say, "Oh Biskits" because that word is ok to use at special oh-yimpicks. I like to say other words better, but then coach says, "Angela, take a seat on the bench please!" and I don't like that so very much. So I just say Biskits and Snap instead.

There is something that is really important to do at backicksball, and that is to help other peoples. It is important to help them if they miss the ball and sometimes you go get it for them. Some people can't run fast like me, so I help them out lots. I make sure to tell everyone, "Good job dribbing!" even when they are having a hard time with it. This is called sportsman like and it makes other people feel good.

When it's time to go home I'm wiped out. That means very tired and ready for a snack.

Tonight is dance class. Did you know we did it on a stage a couple weeks ago? I had a lot of nervousness but I did it! Now we are learning a new Jazz dance, and it is called, "I'm gonna wash that grey right outa my hair". I am in trouble with this dance because it is very hard. We have to dance with a towel swishing all over the place to the left, and to the right, and on my head, and my hand doesn't know how to grab the towel all of the times. My teacher said she will fix the towel for me this week. So, I'm gonna go eat my dinner now and then go to dancing class.

Bye!

Sunday, October 14, 2007

Oops!

Sometimes, life just runs away with you! It's been very busy here the last few days. Lets see...Thursday evening my dog was in labor, so I thought. Friday morning still no puppies and a BIG problem. Noon, and emergency c-section for the dog. The outcome was 8 healthy puppies (7 girls, 1 boy!!!) and two dead ones. Mom is recuperating well and today is up and moving a bit more. Sometimes c-section dog moms have problems with their milk coming in, and we had some VERY HUNGRY PUPPIES!!! I was bottling each of them to keep their blood sugar up, but not too much so they'd still try to nurse. Saturday morning when I got up her milk was in!! Evidenced by the fact if I even THOUGHT about touching one nipple she was squirting like a cow!!!! (sorry for the details.)

I have a lot of fun with my dog website. I have a daily puppy journal (a dog blog. LOL) a pregnancy tracker page (which is thankfully now completed) and then each puppy has his/her individual pages that gets updated each weeks to their new family can watch them grow. My puppy families love the website (I can tell by the hit counter! LOL) and I love watching their excitment, especially as the puppies get closer to going home!

Here's a video of the new babies.

Thursday, October 11, 2007

Army guys

For 6 months, 3 or 4 times a day, Angela has talked about Halloween, and every time has informed me that she's going to be Spiderman. The conversation usually goes something like, "Mom..mom..What month it is?"

Me: "It's July Angela. Remember we watched fireworks last week?"

Angela: "When's October?"

Me: "Lets count it..July August September October."

Angela: "Halloween is in October. I be Spiderman for Halloween. Lets go get a costume!"

So over the months when she's gotten really bored and I need to keep her occupied, I stick her on costume websites and let her surf. She always goes back to Spiderman.

Then a week ago something strange happened. Angela came home from school saying she wanted to be a monster. I thought this was pretty funny considering she HATES masks that don't look like a real person!

When I took her for the haircut the other day we had 1/2 hr to kill so we went next door to Walmart to see what they had. *I* was looking for Spiderman, but Angela was still talking about being a monster. That is...of course...until we GOT to the Halloween isle! She wouldn't even GO DOWN IT with those monster masks hanging there. We moved into the kids costume area and right away I found Spidey. "Here it is honey! Spiderman!"

"No...I'm not liking that. How about these?" ( dramatic arm sweep as she indicates the 3,000 other costumes.)

We started digging through the racks, looking for one her size. Then she found *IT*. "Here it is! An Army guy!!! YES!!! I want to be Army guy!"

I looked down at the pretty princess costume in my hand. "How about this one? Isn't it beautiful? It has a crown and everything, and look a wand thingy!"

"I'm not liking that. Yuck. I'm liking Army guy."

Army guy came home with us, and since Monday she's been wearing it every day after school. Last night just before bed she brought it to me all wadded up into a ball. "Take it back. It's too small."

"It's not too small Angela. In fact, it has just enough room for the snowsuit you'll need underneath it!"

"No, it's not. It's too small. Take it back ta Walmart. I wanna different one."

"Well, I'm not buying another costume. You picked the army guy, so the army guy it is."

(arms grossed, chin out) "Fine then! No Halloween. Nope..I'm not liking Army guy! He's gross. Blech (mock puking here) I know! How about Spiderman! You order it on the puter, not Walmart!"

I'll be glad when this Halloween has come and gone.

Things that make you go "Wooooow!"

How's this for a couple very interesting pictures? When our breeding females hit day 60 in their pregnancy we do an xray so we have a skull count. This helps us know when she's done, or when we should be seeking help because we know there are more but she's ACTING done.

So all you moms out there, how would you like to be carrying this around?

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Photo Sharing and Video Hosting at Photobucket

Tuesday, October 09, 2007

My other hat: Dogma

A few people have emailed me asking about the dogs, so I thought I'd give you a little glimpse into the other part of my life; that of "Dogmom". Right now I'm on puppy watch, and have a pregnancy tracker page set up on my dog website. My expectant puppy families are obsessively checking the website (I know you are, I can see your IP addresses! LOL) in anticipation of the big event. If you're interested in what a "pregnancy tracker" page is all about, here's a link to the page from my last litter and then a link to the current page Have fun reading!

A Story of Faith and Hope

In honor of Down Syndrome awareness month, and the "31 for 21" challenge, I thought I'd post our story here. I hope you enjoy it, and can see why I KNOW Angela is a child of God.
............................

In 1993, shortly after Angela's dad and I got married, I had a dream. I saw myself 8 months pregnant and having an ultrasound done, and there were twins in there! The doctor could clearly see that one baby was a girl, but he couldn't see the other one. Then I heard God's voice say, "Though shalt name this baby Faith. For the Faith that you had that you would have a girl." Then I saw myself delivering, and as the first baby was delivered I announced her name as Faith. As the second baby's head appeared I heard God's voice again say, "Thou shalt name THIS baby Hope, for the hope you continued to have that you would have 2 girls."

Fortunately, I had the presence of mind to tell the story of that dream to everyone I knew! I would come in handy later when I was not in a state to remember such things.

Fast forward 3 years. I spent a winter pregnant, and went on bed rest at 16 weeks due to a placental abruption. We could NOT decide on a name, but I knew I HAD to have her middle name as Faith! Her dad wanted "Angela", but I didn't because at the time I was interpreting for a girl by the same name, and I didn't want her to think I named the baby after her. We went around and around and just could not agree on a name.

On June 2nd, 1996 my doctor had finally given me the O.K to go to church, and DRIVE there myself! (My sister had picked me up a few times, but I kept it a secret from my doctor) While driving down a quiet country road to church I suddenly KNEW there was something WRONG with this baby. It wasn't a "what if" kind of feeling, it was an "I KNOW!" kind of feeling! I was in instant hysterics. It's only a 10 minute drive to church and it was all I could do to compose myself and walk in the door.

When I got there (late as usual) I sat in my seat and just tried to calm down. Suddenly the song "Standing on Holy Ground" played, and in front of the church I saw my baby, floating in the air, with 2 circles of angels around her. The first, inner circle was facing her, caring for her. The outer circle was facing outward, standing poised as if fighting a battle. I heard the strong quiet voice of god say, "Her name shall be Angela Faith, for the Angels of Faith that protected her throughout this pregnancy. Your fear was unfounded. She will come to teach, she will come to heal, and she will come to love more than anyone but I can love."

Now, I wasn't due until July 4th. But I had the feeling I wasn't going to go that long. Three days later, on a Wednesday, at 35 weeks, I had a dr. appointment. He told me she was really small, but that they weren't going to try to stop my labor anymore. I had been months on the meds and I was still contracting A LOT, and he felt the last of the functioning placenta was shutting down. But he warned me that if I went before 36 weeks they would airlift the baby to the NICU unit in Minneapolis. He wanted me warned ahead of time so when I heard the helicopter I wouldn't freak out about it. We also discussed the possibility of a c-section. I'd spent so much time in bed I was afraid I wouldn't have the strength to labor, but I was even MORE afraid of a c-section! See...I have control issues...and having a c-section means I AM NOT IN CONTROL! I also didn't want to hear suctiony kinds of noises, or feel the tugging that women talk about. I told the dr. if I had to have a c-section, I wanted to be KNOCKED OUT! That comment got me nowhere, of course.

On Thursday morning, about 4:00 a.m. I woke up to pee. I waddled to the bathroom, and then went back to bed. When I got there I realized the baby didn't wake up like she normally did. Usually I'd go back to bed and she'd bounce around in there awhile, keeping me frustratingly awake. Sometimes I would play "tag" with her, poking one side of my belly, then the other as she moved to get away from the pokes. But this time there was nothing. I decided I was being over sensitive, and went back to sleep!

At 6:00 a.m. my husband left for work. As had become his habit he asked " Is it O.K for me to go to work that day?" In other words, he didn't want to drive an hour only to get called home as had happened on several occasions!

Not wanting to alarm him I decided to keep my concerns to myself. I was sure I was worrying about nothing anyway. As soon as he left I got up and ate a PB&J sandwich and a glass of orange juice. You know, sugar kick for the baby to wake her up a bit. A half hour later I still hadn't felt any movement, so I put the buzzer of my alarm clock against my belly, hoping to startle her awake, but still NOTHING!!!! Now I was starting to panic a tiny bit.

I called the hospital and their first question was " How many MINUTES does it take you to get here??" I told them 20 and hung up. Oh my God! I had two 6 year olds sleeping in the next room. I woke them up, threw some extra clothes in a bag, and sent them walking in their P.J's to my daycare friend down the street.

I threw a bag together for myself, and then realized I needed to call my husband! He didn't have a cell phone, so I called his boss, who said Andy was just pulling in the yard. I told him, "I'm going to go get checked out. Don't worry about coming down to the hospital yet. I'll call you as soon as they tell me something useful." Thank goodness he never listened to me! When I got to the hospital, there was Andy standing at the entrance waiting for me (to this day I don't know how he beat me there!) along with a nurse and a wheelchair.

They wheeled my up to an L&D room, and strapped on a fetal monitor. I was told to push a button anytime I felt even the slightest movement. After 15 minutes of laying there feeling NOTHING, all of a sudden a flood of people came FLYING into the room. Apparently I'd had a contraction so mild I didn't even feel it, but the baby's heart rate dropped to 20 when it happened. They wheeled in an ultrasound machine and gelled up my belly, only I was scared to death to look at the monitor, sure I was going to see a dead baby! They looked for the smallest movements, like fingers and toes, and there was NOTHING, only a very slow heartbeat. But what was worse was the total lack of MEASURABLE amniotic fluid!

Before I could take a breath, the world started to spin around me. Andy was next to the bed, frantically making phone calls. One nurse was next to me, trying desperately to start an I.V. while another was between my legs trying to get a catheter in me. They stood me up and made me walk across the hall to the surgical suite, as there was no time to wait for a gurney.

I lay down on the bed and suddenly freaked out! It was all too fast, I had no control. I followed orders and bent myself in half while they tried to get the spinal block going, and the next thing I know I'm laid out naked on the bed, crucifix style with my arms strapped down. Not exactly feeling in control of the situation! One nurse started started shaving me. I told her if she ripped the hair out one by one, it would be less painful! Someone kept pinching my toes, and I kept yelling “I feel that! I STILL feel that!” I was scared to death I would be the on in a million who would feel everything during surgery.

I heard a voice near my head say, “This is taking too long, maybe we should do a general?” Suddenly I didn’t WANT to be put out! Suddenly I wanted to know everything that was happening, even if it was so fast I couldn’t comprehend it. I became claustrophobic, and demanded that one arm be untied. Then I was told “Here we go!” There was lots of talking, and two people came up by my head and started pushing my belly towards my feet. I felt like they were going to push me off the table! I kept asking my husband, “Is this normal? This is NOT normal! I KNOW this is NOT normal!” The two gowned people continued pushing and there was tugging everywhere on my body, making me feel like they were just going to quarter me. I was in the midst of hysterics when I realized I could hear a helicopter just over the building. I had an odd, comforting feeling. I said, “I hear my baby’s ride!” and everybody laughed a strange, “this woman is nuts” kind of laugh.

“Here she is! What’s her name?”

“Angela Faith!” I yelled, and then turned to my husband, realizing we’d never finalized this decision. He thought it was a wonderful name. (Mostly because he thought he got his way. He had no idea what had happened in church just a few days before.)

But Angela Faith was very quiet. In fact, the entire room was quiet. There were a few hushed whispers off in one corner of the room, and some over my belly, but no baby cries to be heard. “Why isn’t she crying? I don’t hear her crying! WHAT IS GOING ON?” I demanded! On my third attempt, the doctor at my belly said something about "the mom getting hysterical" and "would someone please ANSWER her!"

I heard a muffled voice from the corner of the room, “She’s breathing now. She’s not crying because we had to intubate her, but she’s pink and looks great.” Later I would find out the “great” was just to calm me down, because, “near death” was much more accurate!

Angela Faith, before I could see her, was whisked off to the nursery to prepare her for her first helicopter ride. Relieved that the crisis was over I nervously joked with the doctor who was closing my belly. I begged for a liposuction, but she said no. Something about liabilities, wrong tools, etc. A person can try right? I wonder if I would have been joking had I known the trauma my husband and parents were going through in the nursery. Whoever said it was right, ignorance is bliss.

With my incision closed I was moved to my room. The nurse told me the baby would be brought in for a minute before she flew. I looked out the window to see the helicopter right there on the pad, not 300 feet from my window!

Andy came in, with my parents at his heels. I asked how Angela was, and his reply of “Fine.” Sent chills up my spine. I looked to my parents, standing at the foot of my bed, and realized my dad was crying. Never in my entire life had I seen my dad cry! “Everything is NOT fine! What is wrong with the baby?”

“Well,” Andy took a deep breath here; I thought he was going to pass out! “They think she might have a little bit of Down Syndrome.”

“A LITTLE BIT OF DOWN SYDROME? You don’t HAVE a LITTLE BIT of Down Syndrome! You either HAVE IT or you DON’T!” I was, needless to say, very upset, but I didn’t have time to say more. Just then Angela was brought in, and set in my arms. Because they were bagging her, I couldn’t see her face. She was so tiny! She was only 4 pounds 4 ounces. All was quiet in the room…...peaceful. But, I knew enough……I turned her hand over and stroked the single transverse crease across her palm.

After 3 minutes with my baby, they left in a flurry of flight suits and IV bags. I watched out the window as she was loaded in. I didn’t even notice the tornado warning sirens going off until the nurse came to move my bed away from the window. Great! My baby is flying in tornado weather.

My husband was a wreck, “Where do I go?” I told him to go with the baby, of course. I could handle myself here, but she needed her daddy with her. So he left too. And then my mom, standing at the foot of the bed said, “You know; now it all makes sense. Everything you’ve done with your life until now; all the kids with disabilities that you were determined to help, with diagnosis I couldn’t begin to pronounce. Now, all of that makes sense.” My mom was so right! (As she always is!)


I looked at the clock, it was 11:25 a.m. Angela was born at 11:03. I had only been at the hospital for two and a half hours, and in that time my life had been turned upside down! I couldn’t sleep. All day the nurses kept coming in telling me I HAD to sleep, but it just wouldn’t come. My baby was an hour away, and HELLO! She has Down Syndrome!

My sister came in the afternoon, and helped me make the phone calls that were supposed to be joyous. The worst was calling my cousin who was due with her first baby at about the same time Angela was supposed to arrive. I didn’t want to make her worry that this could happen to her too.

When my sister left, and all was quiet, I was left alone with my thoughts. To tell you the truth, I don’t remember much of them. I only remember crying tears that just seemed to come from the deepest well.

At 11:00 pm the Neonatologist from the Children’s Hospital NICU unit called me to get authorization for Angela to receive a blood transfusion. (She would go on to receive 19 of them over the next month.) I asked if he thought she really had Down Syndrome or not, and was told what I later would discover to be a common answer, “We’ll just have to wait to see what the blood work says, but she does have some of the characteristics.”

The next morning I was going to be transported to the Maternity floor at a different hopsital that adjoined Angela’s hospital. Unfortunately our insurance wouldn’t cover the transport, so my husband had to take me himself. The catch was, in order to leave the hospital, I had to be able to stand. This was going to be interesting since I’d just had a c-section and couldn’t yet feel my feet! With the help of 2 nurses I WALKED to the shower. The nurse wouldn’t leave the room, and I told her it was just like my days of showering in the Army! All she needed was soap for herself. LOL

The drive during rush hour traffic across town was so scary! I was a nervous wreck, grabbing hold of anything I could whenever Andy had to brake, feeling as if my belly would burst open with too much pressure. When we got there, a nurse was waiting for us with a wheelchair. She let me sign all the papers right there in the hallway, then brought us through the tunnel to the NICU. She showed us the procedures of washing and gowning before we entered the unit, but I was rushing to see my baby!

When we FINALLY entered the unit, I stood up out of the wheelchair. The NICU nurse looked at me and said, “Did you just have a c-section YESTERDAY? You’re not moving like a section mom!” I made some goofy comment, and turned to the baby on the warming bed.

Here she was! Here was the most amazingly beautiful little girl I had ever seen in my life! I looked around at all the other babies in isolets, hooked up to various machines. My baby had an I.V. in her scalp, a nasal feeding tube, and that was IT! She wasn’t even on any oxygen! I looked at her closely...she looked so much like me! My boys are blonde haired and blue eyed, but Angela was so DARK! She had tons of pitch black hair, and dark olive skin like mine. Ok, she was a bit jaundiced, but she was still dark! The nurses had her dressed in a red ruffled doll dress, with a pretty red ribbon clipped in her hair. Her nurse blushed when I commented on the outfit. “It’s not often we have a baby we can play with! Usually they’re hooked up to so much stuff, but Angela we can carry around!” And carry they did! But as I looked at my beautiful girl, I questioned the question of Down Syndrome.

The neonatologist walked in and introduced himself. I never did register his name. He explained the medical issues that were of immediate concern for Angela. They were $10 words, but in English she had Direct Hyperbillirubinemia, (which, unlike typical newborn jaundice, does not respond to phototherapy) a nearly non-existent platelet count that happens with the placenta shuts down too early. The body, in its desperate attempt to get oxygen, stops producing platelets (clotting cells) and over-produces red blood cells (oxygen carrying cells). Because of this, she was at significant risk of brain bleeds, so was receiving platelet transfusions. Her gallbladder was mysteriously missing, and she’d undergone several ultrasounds to try to find it. She had cholestasis (sp?) a condition of the liver. She was getting several medications via her I.V and nasal feeding tube.

But I didn’t care about any of that. I wanted to know if she had Down Syndrome or not!

So the doctor started at the top of her head and pointed out all of her features that were red flags of Down Syndrome or some other chromosomal anomaly.

1) Brachealcephaly (the back of her head was VERY flat.) I felt the back of my head, and tried to sneek a peek at her dad's.

2) Nuchal fold (fat pad at the base of the neck/tope of the shoulder blades) I felt the back of my neck, and looked at her dad's snuck a look at her dad's as well.

3) low-set ears with over curling on one of the pinnas (outer ear) I felt my ear, sure that there was over curling there. I couldn't see her dad's ears. I tried to picture the ears of our 4 other kids.

4) Almond shaped, slanted eyes My eyes. Angela had my eyes. I remembered all the times when I was a kid did people ask me if I was of Asian decent.

5) epicanthal folds (a crease at the inner/underside of the eye.) Yep, I was pretty sure I had that. Nope, her dad didn't.

6) Total lack of a nasal bridge. I have a huge nose.

7) down-turned corners of the mouth (Angela looked like she was frowning) I wanted to find a mirror!

8) Cool Protruding tongue (she looked like she was playing with it all the time, and it was so long!) I KNOW I remembered Tyler playing with is tongue as a baby!

9) Wide set nipples Wasn't gonna check that at the very moment.

10) Single transverse crease across the palm of the hand I had already checked my hands, my husband's hands, and the hand of every person I could sneak a peek at, and found that her brother Robbie had a single crease on one palm.

11) Short stubby fingers (Angela’s were not even ½ the length of her palm) Nope, not something I have, or her dad.

12) Arms wide spread/palms open instead of clutched inward like a typical baby will do I felt like I couldn't remember enough of my boys when they were babies, and wanted to go back to look at pictures!

13) Extra wide space with a crease between her big toe and first toe Ok, my ex husband had that! Oh wait..he's an ex!

14) Short toes

15) Extremely low muscle tone throughout her entire body I had a hard time understanding this concept.

16) A questionable heart echocardiogram that showed a small but common heart defect.

Ok, so when he pointed everything out one feature at a time I could see it. Yes, she was different than my other babies. I wish he’d never showed me the features, because until that time, I thought she just looked like me. Now...Now she was ‘different’.

That evening the nurse said to me, “Didn’t you have her at W. hospital? Because that baby right in the next isolette has Down Syndrome too, and is from that area. I’ll try to hook you up with her mom, but she was discharged today. I’m sure you’ll run into her here. That baby will be here awhile.”

The nurses had stuck cute little posters above the babies’ beds with their names on them. The name above this other baby was Hope.

Nice name, Hope. Strange that the lived so near us. We were in a VERY rural area! The significance of Hope’s name never dawned on me until I called my mother, and mentioned this other baby. My mom was silent on the line. Finally she said, “Leah, don’t you remember that dream? FAITH AND HOPE!”

Oh my God! How could I forget THAT? I was determined to get in touch with Hope’s mom now, but sadly our paths never crossed. I spent my days traveling between the NICU and my room where I was frantically trying to get used to pumping milk. Liquid Gold the NICU nurses called it. I called our school district to have then notify the Early Intervention program. I’m sure they thought I was off my rocker, calling so soon, but I felt the need to DO something!

Finally the day came I was to be discharged. I did not want to go home yet, almost two hours away from my baby. My doctor came in, asked how my baby was doing. I told him they estimated her to be there a month or more. He looked my staples, and in a sarcastic voice announced that because my incision was still bleeding (it had ONE DROP!) I would have to stay another day. This allowed me one more day near my baby!

The next day, as I was waiting in my room for Andy and the kids to pick me up, the curtain separating my bed from the empty one on the other side of the room was drawn, and another mom was brought in. As I listened the conversation between the nurse and this mom, I learned that she was being re-admitted because of some complications she was having since her delivery a few days before. Finally, putting all the information together, I realized this was Hope’s mom!

As soon as the nurse left, I stuck my head around the curtain. She was in tears, clearly very upset for being back here, not with her baby. “Are you Hope’s mom?”

“Yes.” She said, obviously wondering how I knew this.

“My baby, Angela, has Down Syndrome. Hope is next to her in the NICU.”

We were both instantly ecstatic! We talked a blue streak until Andy arrived an hour later. (Thank God he’d gotten stuck in traffic!) Therese had had a similar “Faith and Hope” dream right after they received their prenatal diagnosis of Down Syndrome. We discovered that “Faith and Hope” were due on the same day, July 4th, but Hope was born on June 5th, and Angela on June 6th. Hope was not expected to survive her delivery, having a rare lung disorder, but that feisty little girl pulled her own chest tube out when she was one week old, something that is normally done by a surgeon!

On June 6th, 2007, Angela turned11 years old. We are still in contact with Hope and her mom. It is a friendship that is God ordained and will continue for a lifetime

Monday, October 08, 2007

I'll Have a Green Mowhawk

For several weeks I've been contemplating what to do with Angela's hair. School pictures are tomorrow so I decided I better get this done! I really wanted to go super-short into a shaggy pixie cut, but decided I'd better not.

She needed something that would be easy for her to care for, as she can comb it, but she can't pull it back by herself. She also needed to be able to keep it out of her food!!! I'm tired of lunch coming home in her hair, and I don't think it's fair to school staff to have to deal with the hair. They have enough to do. And again, independence is getting to be more and more my focus these days.

For those who don't know Angela, here are some interesting facts about her. Angela is not thoughtful or introspective. Angela does not take her time in any way/shape/form with anything. Angela is spontaneous, humorous, and...well..you just NEVER KNOW what's going to come out of her mouth!

So we walk into the kids hair place, and while I'm looking at the hair books Angela hops up into the chair. The girl who's going to do her hair says, "So, what are we going to do with you today?"

Angela replies with, "Ummm....I'll have a green mowhawk please!"

I look up just in time to see the stylist look at me with a "She doesn't REALLY get to do that, does she?"

Now, I know I've been talking about independence, making decisions for herself, and all kinds of really honorable sounding stuff, but I'm sorry...green mowhawks aren't gonna fly! I made a face to the stylist that said, " ARE YOU CRAZY?" and told her to just do a simple wedge.

So here's Angela's new do. Too bad she couldn't have the mowhawk!
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Photo Sharing and Video Hosting at Photobucket

Keeping up!

It's hard to keep up to the "blog a day" thing when you go out of town! There are no wi-fi hotspots up in the north woods of Minnesota. LOL

Dean and I had a really nice weekend. Angela went to her dad's so we took all 3 dogs up to a relatives property that backs up to Itasca State Park. 400 acres with a private lake and miles and miles of trails. We caught our limit (40) of Jumbo perch. Couldn't even put your line in the water without getting a bite! PERFECT!

We were also able to stop in and check on my dad who is SUPPOSED to be off his feet to let his fractured tibia heal, but clearly isn't able to follow doctor's orders! When Mom comes home from Kenya he's gonna be in trouble.

This afternoon I'm taking Angela to get her hair cut for tomorrow's school pictures, then to the hospital to pick her her new orthodics, THEN to get some new shoes to fit the orthodics. Yes, we're STILL trying to recover from the semi fire back in August, but I think the orthodics are the last thing on the list, other than recovering the actual money lost. I'm loosing hope that I'll ever see it.

Friday, October 05, 2007

Finish it Friday

Yep, that's right! It's Finish it Friday. You know that one pesky project that's been haunting you? Today (well, really this whole weekend) I'm pushing you to finish it. At my house it's the half-stripped kitchen wallpaper. As soon as it's done I can paint and finish this darn remodeling project that started back in....ready? MARCH! Yep, we put new floors in, which quicky snowballed into removing a wall, adding a new railing, ceramic tile, paint, and lots of other stuff like that. Now Dean wants to put on an addition BEFORE the two HUGE family reunions we have in June and July. Yeah, right! I can say this though, we work well under pressure.

This next week will also be my last chance to get any major projects done, as I have a litter of puppies due and then lots of stuff comes to a screeching halt.

Mondays' theme will be Make it Monday. You can make something on the stove (but it has to be something you've never made before) or make something with a child, or make something for yourself, or make someone else make you something! LOL Have a great weekend, and don't play too hard!

Thursday, October 04, 2007

When the Mom Gets Sick

When the mom get's sick, life doesn't stop. I have been sick all week with a bad cold. It's nothing serious, just a cold. But all I really want to do is SLEEP, so yesterday I was looking forward to putting Angela on the bus and crawling my aching, sniffling, itchy-eyed body back to bed.

But Angela had other plans.

When I told her it was time to get up she didn't move. This is highly unusual, as she LOVES going to school. Instead of popping out of bed like she normally does, she hollered, "Fine!...B****!"

I have to tell you Angela knows all the cuss words there are. (Thanks to her dad!) When she's in a bad mood (which seems to be all the time lately) she uses them constantly. On the advice of our behavioral specialists we're giving her ZERO attention for this. Do you know how hard it is to be in the middle of Target and have your child holler "B***" at you and do NOTHING ABOUT IT? It infuriates me, she knows this, and so she continues to do it. We've been doing the "zero attention for swearing" bit for MONTHS and it's useless. When I find something that works EVEN ONCE I'll let you know!

Back to yesterday morning.

So the kid is in bed, hollering swear words every 3 seconds just for the sake of having something to say. I am sitting at the kitchen table with the phone in my hands talking to her special ed teacher, "Angela won't be there today...She doesn't SEEM sick but we're going to the doctor anyway, because I want anticuss pills...Yes, I hope she's feeling better tomorrow too." I will not lie. I think I heard her teacher sigh in a "Oh what a relief" kind of way.

I dragged my sluggish body and Angela's swearing one to the doctor, where she tested positive for strep. Here I'd hoped that taking her tonsils out would have lessened this problem. Silly me. When we got home it was all I could do to make it to the couch, find a movie on cable for Angela to watch, and drift off into a cold formula induced sleep.

Angela, on the other hand, saw this as the ultimate opportunity to play doctor on me. She dragged out all her doctor paraphernalia, donned her Dr. Angela jacket and mask, and came at me. I was just hitting REM when my left eye open was pried open to look at them with her scope. "Yep! She awake Sophie!" she announced to her invisible nurse. I pulled the blanket over my head to ward off the attack, only to have her whack what she THOUGHT was my knee with her reflex hammer. "Angela, please go watch your movie and let Mom sleep. I bet I have ice cream here. Let me sleep for an hour and I'll get you some."

"Ok Mom! No problems!"

I hunkered down under my fleecie blanket and Angela threw her sleeping bag on top, tucking it T-I-G-H-T-L-Y under my chin to be sure it stayed there. I could feel the waves of exhaustion coming over me, and that heavy "I'm almost asleep" feeling when I heard the front door slam shut. I opened one eye....there's the TV, but no Angela in front of it. I listened, hoping to hear her clomping through the house. Instead, outside the back window I heard, "C'mom Dudley! Let's go for a walk!" We have a large pond in the back yard!

GOOD GRIEF!!!! CAN'T A MOM GET A NAP??????? The entire rest of the day went like this. When Dean came home he headed to the basement to call in his work orders. About and hour later I went to tell him something and found him out cold on the basement couch. Go figure....

Wednesday, October 03, 2007

What Are you Wearing?

So, what cause are you supporting today? Are you being an advocate or an observer? Today I'm wearing my "My kid has more chromosomes than your kid" t-shirt.

A couple months ago I was wearing my shirt while on vacation. As I stood in line in the women's bathroom a woman about 60-ish scrunched up her face in a puzzled expression as she stared at my shirt. "What does the extra chromosome do for your kid?" I told her that's what causes Down Syndrome. "THATS what does it? An extra chromosome? I had no idea! You just never know what you're gonna learn in the bathroom!"

I thought this is a great example of how the vast majority of people have no idea what DS is. They have seen people with it, but the have no idea it has a name. Or they know it has a name but don't know what causes it. (I once had a NURSE put in one of Angela's charts that her DS was caused by exposure to cat litter!!!!)

If you're looking for some cool DS related stuff, go to cafepress and have a look around.

Speaking of days of the week, what did you do yesterday for Try it Tuesday? DON'T LAUGH!. I have always wanted to try a mango. Now, I've had juices that mango in them, but I've never had the fruit itself. I see it in the grocery store but never buy one, cuz...well..what do you DO with them? I don't even know if you peel it, or eat the skin, or stick a straw in it! So yesterday I googled "How to Mango" and pulled up a page that shows how to cut it, what not to eat, etc. Man, gotta love Google! Angela and I came home and enjoyed trying something new together.

Tuesday, October 02, 2007

WELLIES!

Meet Prince Vince. His mom is having a contest for a pair of wellies. Go leave a comment and maybe you could win them?

Tomorrow is....

Tomorrow is Wear it Wednesday. In Honor of Down Syndrome awareness month you could wear blue/yellow. Make yourself a ribbon and people will ask you what it's for. Tell them about DS. Explain that over 90% of babies with DS who are detected prenatally are terminated. (Does the term Genocide come to mind?) If you're a parent of a child who has DS tell them how you've changed for the better because of your child. Tell them.

If you have another cause, consider wearing something that represents it. Here's a couple examples of what's being recognized this month. Click here for a complete list.

October is...

"Talk About Prescriptions Month"
National Council on Patient Information and Education
http://www.talkaboutrx.org/

"Eye Injury Prevention Month"
American Academy of Ophthalmology
http://www.aao.org/eyemd

"Halloween Safety Month"

Prevent Blindness America
http://www.preventblindness.org/

"Healthy Lung Month"
American Lung Association
http://www.lungusa.org/

"Let's Talk Month"
Advocates for Youth
http://www.advocatesforyouth.org/

"Lupus Awareness Month"

Lupus Foundation of America, Inc.
http://www.lupus.org/

"National Celiac Disease Awareness Month"
Celiac Sprue Association
http://www.csaceliacs.org/

Try it Tuesday

Don't forget today is "Try it Tuesday", a day when you need to step out of your comfort zone and try something new. A new flavor at Starbucks perhaps, instead of your usual? Rock climbing? A new route home to/from work? Burger King instead of McDonalds? Taking a nap at 2:00 instead of 2:30? No nap at all? (Sorry, I'm focused on sleep today.) I don't know what I'm going to do yet. I thought about ballroom dancing but I can't find a lesson for today. If I call and find out how much it cost that would almost count.

So late last night I was hanging out online when I heard heavy breathing behind me. Then a voice, "Mom, I can't sleep."

I turned around to find this. Gee, I wonder why she couldn't sleep?
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Monday, October 01, 2007

Pancakes 101

First pour the batter in the pan. Be very very careful, the pan is HOT!



Watch the bubbles. See 'em popp'in? That's when it's time to flip it over.



After you flip it over you have to wait again. Not very long though.
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When that's done, you hafta put it on a plate. This is tricky. Don't drop it! (see my violet glasses? I luv'em...sometimes.)
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A little butter
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Alot of syrup, and it's ready to eat!
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Manic Monday

Today is Manic Monday. This is a day when you attack a cleaning project that you've been putting off for far too long. My Manic Monday project was my office, and I actually started it yesterday. You see, my Mom was coming here today so I could give her a ride to the airport. There is NO WAY I was gonna have my office looking like it has for the past 2 months with MY MOTHER here! Nope, because I don't need any lectures. :-@

Now, I'd love to say I stole these pictures off the "Clean Sweep". website, but I can't because that would be lying. No, instead this is a picture of my very own office. L-) I debated all day long weather or not to post this picture, cuz it gives away a lot of secrets. Like the one where everyone says, "You always seem so together!" and I just smile and nod, while in my head I see myself running to close my office door if I hear a knock at the door.


So I cleaned and cleaned. And cleaned some more, and moved some furniture around, and this is the finished project.


And now for the challenge. Come up with a "Manic Monday" for your house next week, and post a picture of the before/afters. Maybe you have a drawer you've been meaning to clean out, or a mountain of laundry you're behind on, or a garage that you can't get a car into? (I have one of those too.)

Tomorrow is Try it Tuesday. Try something you've never had/done/gone before. Maybe you need to step out of your comfort zone and order something different at Starbucks? Maybe you want to try rock climbing? Whatever it is, I want to hear about it!

Violet

Here's a picture of Angela in her new glasses. It's hard to get the violet to not look so dark in pictures! LOL Angela is not too thrilled with these new glasses. I have to give her breaks like, "You can take them off now, but when we're done with dinner you need to put them back on." This allows her some control, but also gives her a time marker for the next step. It also means she actually WEARS them so her eyes can used to seeing with them. Her vision isn't actually that bad, but one eye turns all over and the lens keeps her eye centered where it's supposed to be.

Oh, and the lesson on the glasses is this: People have to learn to make decisions for themselves. If a child is never given the opportunity, they'll never develop the skills they need to be successful in life. Allowing Angela to pick out something SHE likes is one of the steps to independence. SHE has to wear them every day. SHE has to feel like she looks good in them, and HER idea of what looks good might not be the same as mine. I just hope I can keep her away from the piercings her brothers love so much!

Making Life Decisions

Originally written September 25, 2007

So, Angela is going back to wearing glasses. Not a huge surprise. What WAS a huge surprise was what happened when we went to pick out frames. Alright, knowing Angela I guess I shouldn't feel that surprised. Anyway, she wouldn't consider one single pair that I handed her to try on! Nope, she kept picking out these god-awful colored frames. I kept handing her more neutral things to which she'd say, "Mmmm I'm not into brown. I'm not into silver."

.....ummm....Where did "I'm not into..." come from?

Instead she kept pulling out every purple, red, and neon green frame she could find. There was one style I really liked on her, if only they weren't DARK VIOLET! I wanted to see what the brown ones like like so they ordered them for me to check out.

We went back today to try on the brown....they are very dark brown. With her dark brown hair, dark brown eyes, and dark brown frames....it was just too much brown. That didn't really matter though because Angela isn't "into brown" and only wanted the violet ones. With all the other frames, she'd look in the mirror quickly, then put the violet ones back on, then proceed to look at her reflection from all kinds of different angles....sideways left...sideways right...chin down...chin up...magnified...you name it, she tried it. She really enjoyed looking at herself in the mirror with the violet frames.

I know that this is a game God is playing with me. He knows this particular color is probably one of my least favorite in the entire rainbow. I KNOW that's why He has Angela so attracted to that color. Apparently I'm still getting lessons on how to not give into the control issues I have. I could see Him at work during the whole visit, like he was speaking in my ear saying, "It's not about YOU. It's about HER and what SHE likes."

GAH!

So we ordered the violet ones, and I'm hoping this will mean she actually wears them. In the meantime, I'm now shopping for lots of clothes with a particular shade of violet in them. I'll post a picture when we pick them up at the end of the week.

Speaking of clothes, we're having issues in this area. For kids who have DS, fit is often a problem, but now I'm having different issues. This issue is called, "I want to choose my own clothes, and you're not going to like what I choose."

Angela has about 15 t-shirts and about 4 pairs of pants. (read here to find out why) In the morning she gets in the shower, and I put her clothes for the day on her bed. When she's out of the shower and getting dressed I go get the dogs fed. She ALWAYS comes out with different clothes than what I put out. At the very least, a different shirt. Now, one smart thing I did was get rid of all the too-small t-shirts she had. (sometimes I'm slow about this, which causes problems when the favorite shirt that is now too small is still in the drawer.) I've also gotten rid of the really junky shirts, so at least she's choosing shirts that are wearable. But still....purple sparkly capri leggings with an orange shirt and all kinds of colors on the front doesn't look too good. Add red socks and the purply/silver shoes her dad bought her.

I sent a note to her teacher that said, "Angela is now choosing her own clothes" because I don't want to take the blame.

There is a store called Justice for Girls that my friend told me about. It has lots of "Hannah Montana" and "That's So Raven" type of clothing. I want to take Angela there and let her pick out her own outfits. At least then maybe she'll wear something that matches...one can only hope.

I never had this problem with four boys!