Blogging about life in Minnesota, raising our six 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!"

Saturday, March 29, 2008

When the dangling carrot is spoiled

Angela has been swimming 3-5 days a week since September. She has busted her little butt, to go from afraid to put her face in the water, and not being able to maintain body temperature past 20 minutes, to swimming independently 1/2 the length of the pool, and kick-boarding the entire length AND back, and working on strokes for an hour and a half at a shot (which exhausts her, but she does it.) All in just a few short months.

The past month or more has been tough to get her out the door to the pool. She's often the only kid her age there swimming with a couple older teens/adults who she doesn't interact with. We've had friends call to say they're going to be there, which gets Angela all excited only to have them not show. We've had promises of exciting things AFTER practice, which I've been able to use to get her out the door as well, only to have them fall through. (though I usually try not to tell her about good stuff until we're practically out the door for them for this very reason!)

But today was the worst....

For a month I've been dangling the area Special Olympics swim meet in front of her. The BIG DEAL of opening ceremonies. The day all her extended family was going to come watch her swim, and watch her stand on the podium to receive the coveted ribbon. The day to show off all the hard work she's put in these past 6 months.

So we get to the meet, and I need times so I can call the aunties and let them know what time to show up to watch Angela. Angela is anxious and excited. She's beaming and greets her coach with a hug. We're new to this team, so she doesn't know very many people, but she greets them anyway of course.

We look at the schedule, and don't see Angela listed anywhere. The coach is confused. The person who handled all the entries for the team isn't there yet, but surely she'll have it straightened out. The woman arrives, and I've never seen her before in my life. She doesn't recognize us either. She said she never received Angela's paperwork. I reminded her of the day she was not at practice because of a sick relative and another person was taking registrations. I handed it to that person. No..she never got it. Angela isn't registered for any events today, and no, the won't add her on. This also means she can't participate in the state meet next month.

Getting her out the door for the rest of the season is going to be tough. She's not going to want to go. What for? In her eyes, what's in it for her?

I tried really hard to contain my anger this morning, and my tears. I know how disappointed Angela is going to be, and frankly, I'm just as disappointed myself. My child DESERVED to stand and get that flippin ribbon like everyone else. She has worked so hard. And HELLO!!! I have given up 3-5 nights per week to GET HER THERE!!!! I think my silence, and the death stares that accompanied them, spoke volumes to all involved. We walked out without saying a word of goodbye. Angela was silent on the way home. I looked in the rear view mirror, to see her staring out the window, one solitary tear rolling down her cheek.

Thursday, March 27, 2008

So Where's the Kid?

UGH! I'm sorry this has taken me so long to update you on this aspect of my life: MY SON IS HOME!

On March 10th the mother of the other boy called me, and said that the bus tickets had indeed been picked up, however the person who took the signature couldn't remember what the person looked like, and nobody could find the signature page. (isn't there a reason you have to sign for mail? I'm assuming they're supposed to KEEP that stuff!?!?!)

So we called and called, and neither her son nor Tyler answered their phones. Do you wanna know why?

Are you ready for it?.......................................THEY WANTED TO SURPRISE EVERYONE!!!

Good grief! They had no idea how worried everyone was, and were a bit taken aback when the father of the other kid tracked down Greyhound's dispatch office, and was finally put through to the driver, who got the boys on the phone in the middle of the Grand Canyon! LOL

They ended up pulling into town the morning I broke my arm. Talk about timing! I really needed Tyler here to help me with his sister while I was dealing with my arm and stuff. He's been a great help! And, it looks like he'll be staying here awhile. He's decided (and we fully agree) that he's not quite ready to live on his own yet. He needs to save some money, get a car, and have all those little details worked out before he makes the leap again. So, we've set up a budget for him, and a short term plan (that's all he can manage right now, short term) and we'll work through this from there.

So, the kid is HOME, and the mom is much happier!

Making Connections

Here's one very cool thing about blogging: Sometimes people from your past find you because of it! (Ok, I suppose for some that could be a bad thing, but I don't think I have any enemies out there! LOL)

Over the few months several people from my past have contacted me via my blog. Old friends from high school, a neighbor from when my boys were just toddlers, an anonymous person from my daughter's school, an administrator from a school my daughter attended as a preschooler, and nurse from a clinic we used to visit when Angela was a baby.

I love making these old connections. It tells me that Angela touched their lives when she was nothing more than an innocent baby, or just by their watching her at school and being inspired by all the hard work she put in to get where she is today.

The frustrating part in making these connections is I am often not able to respond to them. If you have contacted me via my blog, please make sure in your user profile you've listed an email address. If you didn't list one I can't respond back to you privately. If you list your email address in the comment itself, you risk being contacted by strangers. ;-)

Sunday, March 23, 2008

Where I am has a name!

*please read my notes at the end of this article for an explanation.*

For some parents, the emotional strain is greater
February 20, 2008
Dr. Rachel Bryant

Mourning, that exquisite pain that comes with great loss, is typically described as having four stages. When a loved one dies, we can expect to experience shock, anger, depression and finally, acceptance.

Shock is usually experienced first, as our mind rushes to protect us from the onslaught of the pain that is coming. We might feel numb or as if we are on automatic pilot as we go through the motions of the day, barely feeling connected to the experience.

Anger and depression come next. They can be separate, intermingled, and moved about at very different paces and order as shock gives way to the full impact of the loss. Depression sets in when we come to the undeniable pain of the loss. It is the longest phase and encompasses the body of mourning as it means facing life without the person or experience that is gone to us.

Acceptance is the last and final stage although we don't necessarily reach this stage and stay there. We have good days and bad days, days where we think we are getting there and days with unexpected lingering tears, numbness and even anger. Ultimately, the goal is to get to the place of acceptance, and time is an ally in this goal.

Parents who have children with chronic conditions such as autism, central nervous system disorders or other developmental disorders that rob their children of "normal" childhood experiences have a unique and little talked about emotional challenge. For these parents, there is no finite moment as with a death, but rather many moments of loss at different stages of development where the loving parent sees the things their child will miss. Professionals who specialize in this area have coined the term "chronic sorrow." This does not mean that there is chronic depression about having a child with special needs. It does mean that there is a reality with which parents of special needs children have to contend. And as with mourning of any kind, it is distinctly personal, and one's own individual timing needs to be respected.

What makes this challenge different is that the mourning, or chronic sorrow, continues to emerge at various stages. There is no end point. All families have fantasies about the life of their family in general and the future of their children in particular. We hope our children will be smart, healthy, kind, and successful. We imagine their first days at school, their first play dates, their academic successes, participation in sports or the arts, always with the desire to watch their budding independence and increasing sense of competence. We also imagine other people seeing our children succeed, and our children basking in the reflection of smiles that come from close friends and admiring family members and teachers.

If a child has mild limitations, dreams may be altered to meet the specific needs of the child. But big dreams about their life and future are still attainable. This mourning can have direction and an end.

But what if those needs are profound? What if a child's needs require vigilance, therapists, special educators and doctors? What if a parent is exhausted daily from struggling to give of themselves to fill the gaps they feel in their child? And what if the gains in return are sometimes so small they are imperceptible? What then?

The intimate connection that a parent has with their child means that there is a daily awareness of their child's struggles. And when there is no road map, no sign post that says at year 5 you will be here, or at year 20 you will be there, how do you proceed? And when you're tired of hearing, "Just take it a day at a time," or have tried to explain to strangers why your child isn't behaving as expected, there can be a profound sorrow and isolation that makes you question your very worth.

My friend who has a child with autism, about whom I've written, tells me: "You know when it's hardest? When a friend comes over and their 4-year-old is doing simple things I don't know if my child ever will. That's when I have a bad day." Many strong marriages have ended because of this unique pain and the sometimes excruciating uncertainty of where this is all headed. Again, this does not mean that the parent does not experience the daily joys of their child whom they would not trade for the world, but rather that there is an underlying reality that requires attention as well.

If you are the parent of a special needs child who is struggling with fears, doubts, and sorrow, please understand that this is normal for the parent who simply loves their child. The chronic fatigue alone that often comes from parenting a high needs child can be debilitating. Realize that you are not alone. Consider seeking the support of a professional who works with special needs children or a support group. If your marriage is strained, talk with your spouse about getting some needed support. Acceptance here means understanding there is no endpoint, to the love or the struggles.

******When Angela was born, I didn't not mourn the loss of the typical baby I thought I was going to have. Being told Angela had Down Syndrome was actually more of an affirmation of the years leading up to her arrival. But the last year or so has been rough, to say the least. I think I'm just now getting to this stage....11 1/2 years down the road!!! Suddenly things are REALLY tough and I'm exhausted. Some of those "firsts" have never happened for Angela (like being invited to a sleep over, or the birthday party of a typical peer), and I'm just realizing it. I'm also able to kind of see where Angela is going to be as an adult, and it scares and saddens me at the same time.

"Chronic Sorrow" isn't something I've always felt, but it very accurately describes where I've been for the past 6 months or so. Strange that I'm just now at that point. It doesn't mean I don't love her. It doesn't mean I don't consider her a gift that we were given. It just means I'm missing some things, and it's hard some days to see that. But more than that, I think it helps others who haven't walked in my shoes, to understand what I cannot explain to them. Don't get me wrong. I don't see myself as being in a constant state of mourning, but I'm sure that I will probably pass in an out of this phase throughout my lifetime with Angela.

Friday, March 21, 2008

World Down Syndrome Day

Today, March 21, is World Down Syndrome Day. The date is significant since 3/21 reflects the fact that people with Down syndrome have three copies of the 21st chromosome. The purpose of World Down Syndrome Day is to promote diversity and raise awareness. This year's theme is "Aim High Enough." You can find out more about WDSD here.

Wednesday, March 19, 2008

It's Not Broken Anymore

HA! I can type! I normally type 75 wpm, and I would guess I'm at about 50 now. Not too bad I think.

Anyway, yesterday was hand therapy. Let me tell you those people are trained to torture you and be nice about it! LOL

The first thing she did was take of my bandages. This was a really weird feeling, as my arm felt VERY vulnerable all exposed to the world like that. She got to the bottom layer and the bandage over the incisions and slowly peeled them away. Now, I have seen lots of incisions without any problem. Angela has had countless GI surgeries, and I'm always removing stitches from the dogs or puppies, but looking at my own incision on my very own arm made me want to throw up. Why is that?

She cleaned all the sticky, itchy stuff off my arm, and then it was time to take measurements of my range of motion. There were several different types of movement she needed to measure and they weren't too bad, except for one. I can't turn my palm up toward the cieling. In fact, I really can't turn it at all, it just stays palm down. This is because of the small break on the radius bone, and the damage to the muscles they had to move out of the way during surgery.

I was then fitted for a brace. I asked why they do braces now, and not a cast and was told, "Well, your wrist isn't broken anymore, because it has plates holding it together. If it were a free-floating break then we'd cast it, but like I said, it's not broken anymore."

Ok, someone please tell my brain that my arm is no longer broken!

I sound like a crybaby, don't I? Well, I've never broken anything like this before and it hurts and it's disrupting my life. In fact, as soon as I'm done writing this I'm getting a haircut. I can't do my hair. Not that I spend much time with in under normal circumstances but now it REALLY looks bad!

I do have to say this though, my brother in law has RSD this is a HORRIBLE disorder caused by damage to the nerves in his leg from an injury and subsequent knee replacement. While I will have a few weeks of discomfort, he faces a lifetime of excruciating pain every moment of his life. And so, keeping that in mind each day, I'll get things sorted out and eventually get back on my motorcycle and continue on with my life.

Oh, and just for kicks, here's a picture of my arm this morning. Lovely huh?

Monday, March 17, 2008

Naked In My Robe

C'mon. You've all done it. Throw a robe on to make a trash run, or to grab something out of your car. I, for one, will never again be caught naked in my robe. Surely if I'd been fully clothed I wouldn't be typing this entry one handed!

Let us take a walk back in time to...say...Wednesday, March 12th. At 9:00 a.m. I was just sending Angela out the door when Dean called, "Don't send Angela out the door alone! There is a huge patch of ice and she's going to fall." So, I slipped just my toes into my tennis shoes, and started Angela out the door...with me naked in my robe. You know, the kind you have to re-tie every 8 seconds? We have this horrible patch of ice right on the front step that is quite large and is head injury waiting to happen. Angela has very poor balance. I held her up and skated her across the ice sheet, then watched to make sure she made it down the rest of the driveway ok.

Quick, before the bus came...because I was naked in my robe...I turned to go back into the house. I approached the ice carefully, but as you all know, once the fall begins, you're S.O.L. I could see that my head was aimed straight for the cement step, and my immediate instantaneous thought was, "ooohh Don't hit your head! You'll be out here awhile..naked in your robe!" It must have been in that second that I stuck my arm out to...I don't know, push away from the step maybe?

The next thing I knew, 3 body parts hit the ice at once. My left hip (it's a lovely shade of green now) my left cheek (cracked one tooth that now needs to be repaired) and my left hand/wrist/elbow-all-at-once as I heard a horrible C-R-A-C-K sound. The pain told me what happened. I screamed "oh my GOD I broke my ARM!!! Oh my GOD!!! Oh God Oh God!" and then I looked up at my arm (and my hand that was where it shouldn't have been)....and passed out. I'm sure it was only for a few seconds. What woke me up was the feeling of wanting to vomit. That and the cold ice against my now-bare front side.

I tried to just breathe. From where I was laying I could see Angela standing at the bus. Good..she's safe...she didn't hear me screaming. Breathe...the pain was like nothing I'd ever felt before. Breathe...

Getting up and off the ice. My naked front side had made the ice melty and slippery. Well, I'm not exactly sure how I did it, except I do remember trying to get hold of the posts on the deck railing. I was tangled in my robe, and my knees and good hand were slipping on the ice. Makes for a great visual, doesn't it? I managed to get into the house, but by then the world was spinning badly. I found my cell phone but couldn't for the life of me figure out how to open the darned thing. When I finally did I couldn't remember Dean's number. Oh yeah...speed dial.

(your difficulty reading this is the same trouble Dean had understanding me screaming in the phone.)

Dean: Hello?
Dean: What? Who is this? Leah? What's wrong? What happened?
Dean: You broke your arm? Honey, I'm THREE HOURS AWAY! I can't get home. Is the neighbor home?

I heard "cant get home" and "neighbor" and hung up the phone. I remembered that speed dial thing and found my neighbor's cell phone on it.

Cindy: Hello?
Cindy: Huh? Who is this?
Me: Leah... can...youtakeme...tothe....hospitalI.....brokemyarm
Cindy: Oh..oh..I'll be right there! Right THERE!

I got off the phone and realized all 3 big dogs are running around outside, and the neighbor isn't exactly fond of dogs. The puppy was dancing around my feet trying to trip me. I hollered for them all to come in, and got them downstairs into their kennels, carrying the wiggling puppy who hasn't yet mastered stairs in my good arm.

I climbed back upstairs and went to the front window to see Angela just stepping onto the bus, and my neighor Cindy down there as well. That's when I looked down and realized somewhere along the way I'd lost my robe. Now I was just naked, with my hand hanging at a sickening angle. I headed for the bedroom and grabbed my "comfy clothes" which would be jeans and a sweatshirt. Obviously I wasn't thinking too clearly, huh? I managed to button the jeans with one hand (making any OT proud, I'm sure!) and figured out how to get the now tricky sweatshirt on. While hollering "ow...ow...ow" I pushed my broken arm through the sleeve, then pulled the rest over my head. The thought of the pain when I did this still makes me nauseous.

I looked for my shoes, but realized one was still laying out on the ice. I slipped my toes into one shoe and tiptoed outside. There sat my shoe, in the middle of the patch of ice...well out of reach. Grabbing a nearby shovel I dragged the shoe to the safety of the cement and stuck my toes in.

About this time Cindy arrived at the top of the drive with her van, but I couldn't get to her because I had to cross that darned ice, and I told her don't even try it or there won't be anyone to get us to the hospital! Somehow she coaxed me over the death patch, and got me hoisted into her huge 15 passenger van, then asked, "Which hospital should we go to?"

We arrived at one of the area hospitals, got my arm in a sling and some drugs into my system, only to be told it would be a 4-5 hour wait before I'd be seen!!! Cindy had a light bulb moment, "One of my kids had hand surgery at this orthopedic center a couple years ago, and I remember seeing an "acute care center" sign in the building. I wonder if they do stuff like this?" A couple phone calls later (quick, before I was too loopy to sign anything) we were on our way. At least the drugs were kicking in so I wasn't in excruciating pain anymore!

This place is amazing! It's called "Tria Orthopedic Center" It's been there a couple years but since this is the only area of specialty Angela has never needed, I didn't even know it existed!

To give you and idea of the type of care a person gets there, when we pulled in front of the doors, the concierge came to get me from the van! I was wheeled up to the intake area, and within just a few minutes was taken to X-ray. I have horrible memories from when I was 15 and broke my elbow and the techs forcing my arm into a position it didn't want to go. This tech was so very gentle, and instead of making me turn my arm all over the place, she slanted the table and made the necessary adjustments that way. I was then brought back out to Cindy, and almost immediately brought back to an exam room.

A couple minutes later the Dr. stuck his head in. "Oh..oops..wrong room. I'll be seeing you next. But, just to let you know, you have a really bad break and are going to be needing surgery." Then he disappeared.


He was back just a minute later and pulled up my xray. I had 3 breaks, a small one on the end of the ulna (the small bone on the outside of your arm) and two breaks on the end of the radious (the larger one on the inside of your arm) and would need a plate or two and some screws installed to put it back together. He asked when I had last eaten and was very excited to hear I hadn't eaten since the night before. It was now 11:00 (I broke my arm at 9:00) and they could get me in for a 1:00 surgery. Had I eaten I would've had to wait until the next morning!

But Dean wasn't there yet, and I really wanted him there before I went in for surgery! He ended up arriving at 12:40. Cindy said a quick prayer for me before leaving us, and we were so very thankful she was able and willing to help me that morning! Without her knowlege of Tria I probably would have gone up to 2 days before having surgery.

Eventually we were brought back and I was seated in a surgical chair. I had an IV placed, and was given some more drugs, and met with the surgeon. (and Dean got to see the xray for the first time. He turned white.) Then the anesthesiologist came in to give me a nerve block in arm. They did this by putting my arm up over my head sticking a v-e-r-y l-o-n-g needle into my arm pit. I felt electrical shock-like sensations zipping through my arm, and Dean said, "Oh cool!" as my fingers jumped around. That's the last memory I have prior to surgery. Dean later told me that after the electrical zingers in my fingers they took a bigger needle and shot stuff right into the bones of my arm. BLECH! Glad I don't remember that!

The next thing I remember is waking up in the recovery room, my head hanging on my chest, and wiping the drool off my chin. I asked for Dean and he appeared from some far away fog. We sure didn't sit there very long! I know I was in surgery for about an hour and a half, and we were home by 5:30!

That night was all about heavy drugs and lots of sleep. Well, really the next two days were. By Saturday I was off everything but Tylenol, which of course I had to overdo a bit, putting me back on drugs for Sunday. If you called during those first couple of days, it's likely I don't remember it, and cannot be held responsible for any promises of "I'll call you back"!

Wednesday, March 12, 2008


just a short one handed note. mpre details later cuz i'm on heavy drugs right now. fell this morning. broke my wrist in 3 places, surgery to fix it. dean says what are you doing on the puter? more tomorroe. bye

Monday, March 10, 2008

To worry or not to worry....

Tonight I came home to find a note on the door, from a mom of one of the other kids that went to Ca. with Tyler. She couldn't find my number but remembered where we live (we're kind of hard to find) wondering if I'd heard from the boys. Turns out one kids dad did buy them bus tickets, and about a week ago had them sent to a UPS office near where they were staying. The tickets were for a bus home at 4:30 this afternoon. To his knowledge the envelope was not picked up. We're waiting for him to confirm this.

Nobody has heard from ANY of the boys in 10 days, which kind of has everyone worried. I did look around in the county jail system there to see if any of them had been picked up, but they're not in custody.

Now what? Any suggestions? We can't list them as "missing" because they're adults (or at least the legal definition of one!) It's very strange that NONE of us has heard anything from them. One boy's mom said he was calling her every couple of days, then just stopped 10 days ago. Exactly the same as my contact with Tyler was going. They're resourceful enough to find a phone and contact one of us, but they're also kids and if they've managed to get into trouble will avoid us. I'm hoping that's all it is.

If anyone reads this who is in San Diego County, specifically Poway, drop me a note, will ya?

What's New With the Queen?

Many of you have emailed to ask what's new with Angela? To be honest, I'm having a really hard time writing anything positive right now. Her behavioral issues have been off the charts since we came back from our trip. Actually, the trip itself wasn't so smooth as far as behavior goes but it's continued to get worse.

About 2 weeks ago we decided it's time for a medication change. The only problem is we have to start the new one and get it to maintenance level and THEN start decreasing the old one. That means that now she goes from crabby to very sedated and sleeping. UGH! Poor kid! We've had to miss a few things (like her favorite last night, agility) because she's just too sleepy. Her behavior is improving some. I just can't wait until we're done with the change.

Last week she was able to go downhill skiing for the first time, which she absolutely LOVED!!! This was a 5th grade field trip, and the adaptive P.E. teacher went along. She told me there are lots of great pictures so I'm waiting for her to send them. Angela even rode the chair lift, which confirmed that it was a good thing I didn't go along! LOL

The Special Olympics area swim meet is coming up soon, and she's looking forward to that! Can you believe it? The same kid who in September wouldn't put her face in the water can now swim 20 meters unassisted. That may not seem far to some, and she still has a long way to go before she's doing a regular freestyle (she's doing pretty much a dog paddle right now) but still she's made major progress!

The Fledgling

The Fledgling (aka my son Tyler) is coming home. You may remember my post a couple weeks ago when he decided to up and move from Minnesota to California. No money to speak of, no job, just an adventure of sorts. You know...the kind that cause mothers to go gray.

He's been calling me every couple of days or so, just to check in and tell me of their latest escapade. By his 3rd day out there he was complaining about how hot it was. By the end of the first week none of them had found a job. ("Mom! All immigrants have the minimum wage jobs!"...something we warned him about being 20 or so miles from the border.)

About a week and a half ago he called me and sounded really down. "You were right mom. I should have listened to you. How come you're always right about stuff like this? Anyway, we're coming back we just have to get bus tickets. Only problem is we only have $70 left and it costs $175 for two of us. (they went with 3, turns out the 3rd kid is staying out there.) I offered to buy him bus tickets but no, he didn't want me to do that. I offered to wire him some money so they could EAT on the trip home but no, he didn't want me to do that either.

I haven't heard from him since. His phone is now disconnected, and I know he doesn't have any money left.

And so the mother worries.

Saturday, March 01, 2008

More on Big, the OTHER one

I'm talking about THE "Big Brother". The one that watches over us all, only I really didn't realize how much! Last night I was reminded if an incident that happened a couple months ago.

Angela and I were on our way home from play rehearsal, which is about 30 miles away in Hudson, WI. It was late evening and we were on the 3 lane interstate when I ended up in the center lane behind a car that was weaving all over the place. He weaved 1/2 way into the right lane, then back to the center then slowly 1/2 way over into the left lane, and continued on that way.

I pulled out my trusty cell to call the state patrol to report the erratic driving. They asked my mile marker, and to describe the car w/license plate (as I tried to read the plate it occurred to me my vision might be getting worse. LOL) They asked me to stay on the phone and stay behind him, letting them know if he exited, of if he does anything else unusual.

After about 2 minutes the dispatcher says to me, "Did you just turn your blinker on to move to the left lane?"

Me: Ummmm....yeah?
Dispatcher: You're in the Suburban, right? Is it Silver or beige?
Me: Beige kinda.
Dispatcher: Yep, I see you.

I'm thinking? You SEE ME?

Me:(after about 15 miles) "They guy is exiting now on .....road. Holy cow! He just went way over the curb! Good thing it was a low one!"
Dispatcher, "Yeah, I saw that!"

So I followed the guy into a McDonalds drive through.
Dispatcher: Once he goes around the corner of the building, he'll be out of my sight. Can you park on the other side? I have a patrol next door in a car lot but he won't be able to see the car until it's on the street, BUT he can see your headlights, so just flash them as the car gets ready to pull onto the street.

This whole thing amazed me. They were able to watch our every move with the exception of the few minutes we were waiting for him to go through the drive-through. How freaky is that? I kept looking around for a helicopter or something, but didn't see anything. LOL Finally I asked, "WHERE are the cameras?"

Dispatcher: Wouldn't you like to know?