Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

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

Thursday, August 27, 2009

Dean and I

My husband emailed this to me from the other side of the room. He says he can identify with this couple:


Wednesday, August 26, 2009

Tracking your kid


Last spring I heard helicopters off in the distance. It was clear there was more than one, and they were close by. It was very odd. A few minutes later our phone rang. It was an automated call from our local police department, stating that a child was lost in the neighborhood, and gave the location of where he was last seen and what the circumstances were. (He'd just gotten off the school bus about 20 yards from their house.)  It gave his physical description, what he was last wearing, his age, and also that he was developmentally disabled. 

The searched for a couple of hours, particularly around a pond located just a block from the family home.  My heart ached for that family. Finally, around 9:30 that night, the boy was located at a local pizza place about 3 miles from his home. 

How many of you, raising a child with a disability, have lived with that fear?

Angela has been a lot better about wandering off over the past year, but there are still times she gets a notion in her head, and off she goes! So far, it's just been to the neighbors, and if I haven't caught her before she gets there, they always call to let me know she just showed up. 

But, I'm waiting for that one time that she decides to go elsewhere. Or, my biggest fear, that someone asks her "Hey little girl, want to go for a ride in my car?" Because she'd be in that car faster than you could blink. 

Here's a new AmberAlert GPS tracking system on the market. This system has a lot of functions, but one of them is a "Safezone". Meaning if your child gets out of a certain range, you'll be notified. It has a speed setting. You know, if the unit is moving faster than 30 mph you know your kid has just gotten into a car!

It's not cheap, but if your kid is a wanderer, I think it would be worth it. If you have waivered services money you could use that as well. Anyway, take a look!

Check this out!

Remember my friend Shelley? Her family is adopting 2 little boys with DS from Bulgaria, and I'm planning on traveling with her the second trip to help bring them home.

Anyway, they're still working on raising money for their adoption fund. Her husband, Robert, is a fantastic seamstress (ok, what is the male version of that word? Is it a tailor?) And he's got a new website up. Go take a look! 

Tuesday, August 25, 2009

Growing up

(edited to ad: If anyone can tell me how my text at the bottom of this post go so screwed up, I'd appreciate it! LOL)

We're trying very hard to grow out Angela's hair, and get rid of the "little girl" look. Because of her size (or lack of it) most people think she's much younger than she is. Even with her braces and pimples. LOL Today was back-to-school day, and everyone thought she was a 6th grader, which she was quite insulted by! LOL "No! I'm a 7th grader! Duh!" (we're trying to get rid of the "duh" from her vocabulary, as it's quite rude, but I think it's ingrained into her. LOL) 

Anyway, growing out her bangs is a pain in the neck. But, I just can't get over how much she's changed! Here's a picture from 2 1/2 years ago:

Photobucket

and here's one from today

Who knows what possessed me to cut her bangs off again a couple years ago, but I'm paying for it now as we grow them out yet again! LOL I have to be honest
some of these changes do not thrill me. One of them being her weight. Some of this is typical for girls with DS, but not all of it. Girls with DS don't HAVE to be heavy,
but there are other genetics besides the extra 21st chromosome at work as well! But, in all honesty, she was not anywhere near as active as she should have been
this summer. In fact, she only swam a handful of times all summer! Not enough to burn what she needs to burn. But, middle school brings a whole new range of
opportunities! One of them is Dakota United, and adaptive rec. league that has various sports throughout the school year. This is part of the state high school league
and the compete against schools in the metro area. Then there is Special Olympics, AND swimming. We're going to work the poor kids tail off, literally! LOL
I know it seems like a lot. But, you have to remember, Angela is the only kid left at home. There is nobody to play with here, except Dean and I, and we are getting old! LOL
We are not the greatest of playmates anymore. Doing Special Olympics, and the rec league, (oh, and she's also joined an area youth group for teens and adults with disabilities!)
all of these things keep her active and connected with friends. They also keep her busy out in the community, and not sitting in front of the TV like she'd prefer. We just have to
play it by ear about how much she can do at once. Really, if she has one activity after school each day is plenty!

This year will be a little more difficult for her though. I think. Not sure I guess. Angela is on shortened days as school. Last year she went at the same time as everyone else
then came home early. She was able to take a nap (sometimes as long as 2 hours!) before her afternoon activities started. This year she's still on shortened days
but she's going LATE (not till 10:00!) and coming home at the same time as everyone else, or getting on the bus for adaptive rec. So she'll get to sleep in each morning
the lucky little duck! But, nothing is set in stone, and everything within her schedule can be adjusted where it needs to be. Don't you wish your schedule
was that flexible??? LOL

Sunday, August 23, 2009

Speaking the language


It takes a lot to get me frustrated. Today, I'm frustrated.

Let me back up a bit...

We have puppies due, and I just realized I'm behind on getting my supplies together. There is one item, hospital soaker pads, that work fantastic for new puppies. These are the WASHABLE pads that lay on top of the bed sheet, say, after a mom has a baby.  I used to get them from a nursing home, but they've stopped using this item, and have gone to disposable chucks. Last week my good friend Ann had a baby, and I went to visit her in the hospital. She was laying on one of the soaker pads. If only she knew how close I was to taking it out from underneath her. LOL Most hospitals have also switched to the disposable chucks, so I was excited to see Ann laying on hers. I know, it's sad.

Now, I can buy them online, but they're VERY expensive. But in the healthcare system, they can only be used X number of times before they have to be thrown away. So I called the hospital where Ann had her baby, and asked to talk to the linen department. The guy I talked to said, "I don't think we even use those."  and I'm like, "Yeah, you do, cuz my friend was laying on one two days ago." 

Well, they contract their laundry out to a Cooperative Laundry company (like a large laundromat for hospitals.) He gave me the number, and I called.....

Me: Hi there. I have a strange question. I'm looking for used soaker pads that are being discarded, and am wondering if I could get some from you.

Laundry worker, in an accent I don't recognize: Who you call for?

Me: I'm not calling for a person, I'm looking for an ITEM

LW: Oh what you look for?

Me: Soaker pads

LW: She no work here

Me: It's not a person! Is there someone else I can talk to?

LW: I work machine. I no what you have. Call back tomorrow. Talk lady upstairs. She speak English.

Ok...ummm...Why is someone answering the phone if they can't speak the language? Why, in the U. S. of A, when I call directory assistance, do I have to CHOOSE English? Shouldn't that be the default and all the other languages can push a button? Why, when I go to McDonald's, can't I understand the guy on the drive through speaker? Why must I REQUEST someone who speaks English well enough for me to understand?

Sorry, this doesn't usually bother me. And I'm all for leaving your oppressed country and coming here to find your dream, and give your kids a future. But man SPEAK THE LANGUAGE! In Angela's elementary school, the most ethnically diverse elementary school in the state, there were 27 different language represented! That is a LOT of kids in the ESL programs.

Ok, jumping off my soapbox now. 

And by the way, don't suggest the disposable soaker pads, because puppies shred those in about .10 seconds flat! 

Saturday, August 22, 2009

Where are the parents?

My friend Kristen posted this today. I thought I'd share it here as well!

Hey everyone, I am mom to Michelle, 9 years old, microecephallic, athetoid/spastic CP, Cortical Visual Impairment, Seizure disorder—and very CUTE! Ok, now for the reason I’m writing. 

To make a long story short, earlier this week a question was asked by some nit wit official as to why there weren’t more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was "Where are the Parents?" The first time this question was asked I went home and started thinking—and boy was I ANGRY—and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, and gave it to a couple of influential people and it WILL get around............ Sue Stuyvesant 

Where are the parents? 
By Sue Stuyvesant 10/15/96 

Where are the parents? 

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child’s medical needs can be properly addressed. 

They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy. 

Where are the parents? 

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks. 

Where are the parents? 

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn’t pull through? The are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child. 

Where are the parents? 

They are sleeping in shifts because their child won’t sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of there own. 

Where are the parents? 

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves. 

Where are the parents? 

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn’t cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families. They are busy, trying to survive.


Wednesday, August 19, 2009

Cool!

Wanna see a cool picture of my kid? Go to this page, and you'll see her in the upper left hand corner. Well, never mind! I added it to my right sidebar. LOL

Monday, August 17, 2009

The future

Lots of people ask me about Angela's future. None of us can predict the future of our kids, but with our typical kids, we pretty much assume that by a certain age they'll be out on their own, or at least working on finding their way to a good future.

But when you have a child with a disability, such as Down syndrome, you just have to throw all your assumptions out the window. When they're toddlers, it's really hard to tell. But by the time they start school, you can start to see glimpses of the future. It would be fun to assume all kids with DS will live independently. But not all do. Fortunately, where we are, there is a variety of living programs available for adults who have disabilities, accommodating a wide range of functioning levels. Even so, in the back of my head I just want to build my OWN facility, so I can choose all the residents and staff myself, and, for the sake of convenience, I would have it located in our back yard. You know, so I know EVERYTHING that's going on!

Angela is 13 now. She just had her birthday in June and and is already talking about next year's birthday. There are a couple of job training programs in our area, and I think they can start in them at the age of 14. (or maybe it's 15, I'm not sure yet. LOL) Angela has made it clear that she would like to be a hostess at Applebees, and a nurse at one of the local children's hospitals. So, I guess I don't need to worry about that since she has it all figured out.

As for where she's going to live when she grows up, seriously, I've had blue prints in my head for about 7 years now, of an independent living facility. I just need to find the million dollars to build it. And there is that small thing about licensing. But I'll get it all worked out (in my head) I'm sure!

In reality though, I have a pretty good idea of what Angela will be capable of as an adult. She's learning to cook now, and is learning to do lots of things on her own that a year ago she was nowhere near ready to do. I can see her in a semi-independent situation. Where maybe she gets herself up and out the door on her own in the morning. Uses some type of public transportation or transportation for those with disabilities to get to her job. (remember, she'll be working at Applebees or the hospital.) She might have someone around to make sure she takes her meds on time, or to help cook a more elaborate meal. Someone to organize events with friends, or to keep her involved in the the community. Dean and I will be able to travel in our retirement, because Angela will be in her own living situation. We will be empty nesters, just like everyone else. Angela's waiver rolls over to adult services when she reaches that age. (well, that's how it works right NOW, but who knows with some of the proposed healthcare changes!!!) As long as she's a resident of the state she is eligible for those services. To me, that means if she's here in MN 7 months out of the year she's a "resident". So, if Dean and I wanted to winter in Florida, we could do that and she could come along???? Or maybe she'd just come down for one week a month or something so she wouldn't loose her slot in some program? I don't know exactly how it would work, but it's what I'm envisioning. Granted, we'd have a lot of time to get used to whatever her living situation is. But we're already working on training her how to be home alone, and how to handle certain situations. 

A couple weeks ago Angela and I were driving to her softball came, and Angela, in very quiet/concerned voice, "Mom?"

"Yes?"

A: "I'm going to a new house soon."

M: "Really? Where's your new house?"

A: "Far away."

M: "Hmmmm Wow, I didn't know that. Who's going to be at your new house?"

A: "Me and Adam and I."

M: "Does Adam's mom know about this? Cuz Adam is only 10. Where will Adam sleep?"

A: "Adam have his own bedroom, and I have my own bedroom."

M: "Well, that's good. That's important that boys and girls have their own bedrooms."

It was quiet in the car for quite a while as Angela pondered her new living arrangements.

A: "Mom?"

M: "Yes Angela."

A: "I'm not see you anymore?"

M: "Why aren't you seeing me anymore?"

A: "Because I'm at my new house. Far away. Can't see you anymore."

I quickly realized that in Angela's world, all her brothers have moved away and she only sees them occasionally, and I don't think they realize this breaks her heart. And in her eyes, when you grow up and move away, you don't see your mom anymore.

M:  "Oh Angela. When you get your new house, I will see you all the time! You might live in your own house, but it won't be far away. I will always be close by. And you'll always be able to call whenever you want. And we will go out to eat together, and do all the fun things together that we do now." 

So, I guess I don't need to worry about where Angela will live, because she has it all figured out!


Friday, August 14, 2009

Bridezillaaaaaaaaaa

I've only seen this show a couple of times, and somehow tonight it's on my t.v.

What person, in his right mind, would marry women like the two portrayed tonight. They don't have one iota of respect for ANYONE...not one single person in their lives...much less the man they supposedly love! Honestly, you can see FEAR in their eyes when their darlings are shrieking demands at them. They don't honestly think these marriages are going to work, do they? Don't they realize all they're going to be is sperm donors, destined to pay child support for a good chunk of their adult lives? 

If this show's premise was reversed, and it was a man behaving the same way towards his future spouse, the show wouldn't even be on the air because it's abusive. But, I guess if it's the woman dishing it out, it makes for good humor, and thus good television.

Unbelievable. 

Update on Bryon

I haven't been able to talk to him, other than on Facebook! (go figure!) Tonight he told me they've found out he has the Anticardiolipin Antibody

Wow, that is some serious stuff. I hope is 20 year old brain understands the seriousness of the syndrome, and how important it is to always take his meds!

Tomorrow, if he's still in the hospital, I'm going to take Angela up to see him. She'll be soooo happy!

Thursday, August 13, 2009

Rain

Hit "Play", then close your eyes and listen.



Thanks Renee!

Tuesday, August 11, 2009

Bryon update

There isn't much news yet. He's still in ICU, and as I type is having some tests done that I was told will take a couple of hours, and we'll have the results tomorrow, which will give us the game plan. So, we wait till tomorrow. I wish I could go up and see him. but with an open incision and a drain hole, it would leave me wide open to picking up an infection. So, here I sit! 

I appreciate all your prayers for Bryon, and the rest of the family. 

Monday, August 10, 2009

Urgent prayer request!

This afternoon my stepson,  Angela's 20 year old brother Bryonm had a heart attack!!!!!

He had been at work and was having crushing chest pain. He went to a nearby clinic and he was put on the EKG which showed he was in the middle of an M.I. He was then airlifted to another hospital, and from there went into the cath lab. They found one artery (I forget which one and I'm very high on pain killers right now.) had "several" large clots in it. The cardiologist says that he probably has an ASD or PFO that had been missed. He'll be in ICU overnight, and on blood thinners, then tomorrow will have a bunch of tests done to determine what happened, and what's been missed.

Please keep him in your prayers! I myself am recovering from major surgery and can't get to the hospital. His dad has Angela and they're on their way home from Texas, and should be home sometime tomorrow. To my knowlege his mom, in souther IL, is NOT on her way up here! I've been fielding calls between the hospital, his dad, and family, and feel totally helpless.

Sunday, August 09, 2009

The finger

Someone asked me how angela's finger is doing. It is doing fine. I talked to her last night and all is well. She'll be home on Teus so I can see it for myself. Until then, drugged sleep for me. For those not on m private blog, surgery went well...just tired.

Thursday, August 06, 2009

Oh, I feel horrible!

I just dropped Angela off with her dad. She'll be with him for a week while I'm busy with other things for several days. So we get to the drop off spot, and I'm getting her suitcase out of the back seat while she's getting out of the front seat. All of a sudden her dad starts screaming, "Get the door! Get the door!" Angela is standing SILENT, but with the biggest eyes ever, looking at me through the car window. HER FINGER IS IN THE DOOR!!!!! 

I run around the other side of the car and open the door, and it looks horrible! HORRIBLE! But Angela isn't making a sound, just saying, "I ok. I ok mom." 

OMG! I felt so bad. We put her finger into a bottle of ice cold water, and her dad was going right down the street so a store to get some ice to put it in. I didn't want to leave her. Poor baby!!!! After messing around with the finger for about 10 minutes, Rright before they pulled away, I looked at it again. It's pretty obvious the whole end of her finger (down to the first knuckle) will be a huge blood blister. They're supposed to be headed on a drive to Arizona tonight, and I made her dad PROMISE ME that if it started to get huge he would bring her in to have it checked, and lanced if need be. 

Ugh, my stomach is in knots just thinking about it!

Sunday, August 02, 2009

We're back!

Over the weekend was my dad's family reunion. My dad is 3rd youngest of 11 children, and all but 2 are still living. The oldest, Ruby, is now 93 years old. It was so nice to see everyone, connect with cousins I hadn't seen in many years, and re-tell all the old family stories. My cousin Noel made the most incredible family tree poster. It was 4 ft tall, and TWENTY FOUR FEET LONG!!!! Seriously!

I have another relative who put together an incredible book that includes birth and death certificate numbers of EVERY person in the family, all spouses, etc. (even several ex spouses were in there.) The historical details were incredible, and account for several HUNDRED hours of work. 

Anyway, it was a great weekend. I got to spend some interesting time with my sister, niece, and their significant others, and have LOTS of  incriminating pictures to show for it! LOL Angela missed the TV all weekend, so she is now downstairs soaking up as much Disney channel as she can until bedtime. LOL That leaves me free to catch up on emails and blogging.