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, June 23, 2010

That church thing

So, I need to find a different church.

Ok, who am I kidding? We need to find "A CHURCH". I have lived here, in this house, in this town, for 6 years, and have yet to find a church home. Dean has been here for longer than that, and in the 7 years I've known him, he's been to church twice.

I (not we) have visited a couple of churches a couple of times. My mom wants to know "why not church "A"? Well, because I don't care for that church. Dean did visit that one and didn't care for it either. I don't have a reason why, just that it wasn't all warm and fuzzy for me there, nor was it for Angela. And if it's not for Angela...well she's 1/3 of the reason we're going. And my mom is a minister, so I shouldn't even need to explain this.

I (again not we) visited another church earlier this spring. They have a large special needs ministry (AND a lot of adoption related stuff!), but on the day in particular that I visited Angela went to the middle school group with the other kids since our neighbor was there. It was "ok", but I know they're in the mist of a leadership transition, and will be until the beginning of September, so things are kind of different around there right now. We might go back again in the fall when I can get Angela involved in the regular Sunday school schedule, etc. I dunno!

There is another church right up the street, with a well known special needs ministry. I've never been there, but have heard good things about it.

But tonight, as I was sitting here thinking about my church dilemma, I realized the one thing I haven't done. I haven't prayed about or for our new church home. I haven't prayed for them to be ready for our family, nor for us to be ready for them.

When I was waiting to meet Mr. Wonderful, I prayed that God was getting him ready for me, that he'd gone through all the life trials he'd needed to prepare him to live with me. (because Lord knows he was going to need all the preparation he could get with all that I was bringing to the table! Three kids, all with "issues", and a wounded heart with an independent streak that was hard to give up!) I also prayed for God to prepare ME for him!

And here we are, 7 years later, and still every day when he walks in the door after work my heart skips a beat, excited that he's home. That same thrill that I had days after we met still there.

That's kind of what I'm looking for in my church home. That as I get ready to go on Sunday morning, there is that air of excitement, "What are we going to learn today?" "I can't wait for Praise and Worship!"  A pastor who draws me in, not one who has me looking for a clock. A church that is accepting of my child, and soon to be two children who are different from everyone else, and yet they are the same. Maybe a church that has a Weds night biker group? Or maybe I could start one! Yeah! we could do a Wed night ride that ends with a bible study or something, that would be awesome. I do have my "must have's" though. Like it needs to be relatively close, since I have trouble getting to places it can't be on the other side of the city. That would be silly. Knowing God it's been right under my nose all along and I haven't been paying attention or something. God does stuff like that all the time, like with my car keys, only this would be with a church.

So that's my prayer tonight...er...this morning since it's now 2:30 a.m!

Ok, Rubee (the golden retriever) bolted to the basement about 10 minutes ago, which made me wonder if there's a storm rolling in. And VIOLA! Thunder! Time for bed!

Tuesday, June 15, 2010

Spying

Thanks to modern Techonolgy, I can spy on Angela while she's at camp, and she doesn't even KNOW it! how cool is THAT! HA!

What's Cool about Camp

So the camp that Angela is at right now is only for older kids and young adults up to age 22) who have Down syndrome. This is when it's cool to have DS!

Some people don't like to talk to their kids about having DS. I'm not exactly sure what their reasoning is (nor have I asked. If anyone here reading doesn't like to, can you explain it? I'd like to understand.) For my kids who have asthma, we always explained it and they've always understood why they had to take medication, and why they had trouble participating in some sports. For my son who has Tourette syndrome, he's always had a name for what was such a visible thing for him, and what caused people to stare at him, and what got him teased.

Angela has always known she has DS, just like she's always known she has brown hair and eyes. When she was really little, before we said anything to her about DS, she would pick out toddlers in her picture books that had DS and say, "Me, me!" as if she was seeing a picture of herself. I would say, "That girl does look a lot like you, doesn't she. I don't know that little girl's name though." and then we'd move on. When she got a little older I'd add, "She does look like you doesn't she. She has Down syndrome just like you do." and then we'd move on. I didn't want to ignore the fact that Angela was seeing the similarities.

When Angela got older and into preschool, I thought it was interesting that the kids with DS tended to gravitate toward each other, and the same happened in Special Olympics too. All these years later I still see it. We don't talk about DS very much with Angela, but once in awhile she will ask about one of her friends. The conversations usually go something like this:

 "Mom. My friend Karly has Down syndrome."

"Yes, Karly has Down syndrome."

"Sarah. Does Sarah have Down syndrome?"

"No. Sarah doesn't have Down syndrome."

And so we talk about how her friends who have DS have eyes that look a lot like hers, and sometimes her friends with DS talk a lot like her, or maybe smile a lot like her. And for awhile, she gets it.

But driving to camp yesterday was one long lesson in DS.

"Mom"

"Huh?"

"Is Adam going to camp? Adam has Down syndrome."

"Yes, Adam has Down syndrome, so he CAN go to camp, but I don't know if his mom signed him up."

"Oh." .......looking out the window.....

"Mom"

"Hmmm?"

"Is Austin my boyfriend going to camp?"

"Yes, Austin will be at camp."

"Austin has Down syndrome, right?"

"Yes, Austin has Down syndrome, so he can go to this camp."

"Is Laura going to camp?"

"No, Laura doesn't have Down syndrome. She won't be going to this camp."

"Oh....that's too bad. Poor Laura....(pretending to write a letter) Dear Laura, I'm sorry you don't have Down syndrome, Your friend, Angela."

"Mom"

"Yeah Angela."

"I have Down syndrome. And Karly....and Adam....and Zack....and Tanya....all have Down syndrome. All going to Down syndrome camp. SO COOL!"

So you see, having Down syndrome is very cool!

But next month she goes to a different camp (which is four hours the OTHER direction!) which is for kids with Cognitive Impairments in general, not just DS. For that we just say that any of her friends can go! LOL (though non of her friends go, because it's out of state and somehow when you drive 4 hours out of state it is more difficult than driving 4 hours "up North"!)

Monday, June 14, 2010

Meet Srecko


Check out this little guy! This is Srecko, and I met him when I was traveling in April. He's the second favorite child I met while I was there. >wink< 

Srecko is in the same group as the little girl we're adopting, and they've been raised as brother and sister for the nearly 3 years. They're almost always together. When I was taking this picture, I learned that he was going to a family here in Minnesota, and I was so excited to be able to send his new mom SEVERAL neat pictures of him! When you're adopting, getting these pictures is a lot like getting an email filled with gold. This one was especially fun because Srecko has got to be one of the neatest kids in the orphanage, next to my girl, of course! 

In the last several weeks, his new mom Tammy and I have gotten to be great phone friends. They live not too far away, and this will be their third adoption from this country. Their first child, Christina, was adopted in 2007, and Jovan just came home in October 2009. In December they committed to adopting Srecko and are really trying hard to come up with the funds to do just that. I'm so excited that they are, not only for them, and for Srecko, but because it means my girl won't loose everyone who is important to her because her best friend will be living right here in the Twin City area. Tammy has taken me under her adoptive mother wing, and has been helping me understand particulars of adopting from this country. 

Maybe you're not adopt a child into your own family, but could spare a few dollars for a family who is. If you're feeling led to sponsor the Severson family, you can click on his button below to do so, and you can also add his button to your blog! (I can't wait until we have a button for Ianna. Soon...very very soon.)



Grab This Button







End to a busy week

So you saw last week that it was crazy around here. The craziness is *almost* done.

Friday night was Angela's birthday party with sleepover (pictures later this week), then I had to be at the ACT testing site at 8:00 AM to take the test with all the other 17 year olds in the Twin City area. (HA! Boy was THAT uncomfortable!) I finished the rest (read "suffered through it) and raced home to pick up Angela and bring her to Dean's family reunion. We hung out there for a couple of hours before going home so I could get her packed for camp and make do a couple last minute errands for camp related items.

Saturday morning found Angela and I in the car at 11:00 for the 3 1/2 hr drive to Camp Knutson for Down  Syndrome Camp. This camp was started by my friend Angie when Angela and her son Ryan were just babies! Kids are ellligable once they turn 10. What an amazing camp it is. First of all, the grounds are perfect. Then, because everyone there has Down syndrome, everyone fits in! There isn't one camper who stands out as different, and everyone is included. There is something for everyone to do. Every year there are many campers who are there for the first time (my friend Ute's daughter Sabina is there for the first time this year at 16) and some who've been there for years. There always seems to be a shortage of girls so camp administration is always happy when there are new girls coming.

When Angela and I were just 10 minutes from home we crossed the Mississippi River, like we do almost every day. She hollered, "Cross Lake!" (where camp is held.) and I'm like, "Sorry chickie, we have another 3 hours yet!" The last 1/2 hour of the drive she started asking me, "You're just dropping me off, right?" In other words, "Please don't get out of the car mom, I can do this on my own." I assured her there were forms for me to sign, and her bag was too heavy for her to carry herself. (and yeah, I packed way too much stuff for her. LOL)  Here's a couple pictures of camp.

Saying goodbye to Dean "Bye Dean, I'm going to camp. Will you miss me?"


I promise I will miss you Dean!



She took time out of her busy schedule to let me take pictures of her cabin. Here's her cubby



And her bunk (with the fakiest smile ever)



And the front of her cabin. "Are we done yet? I have basketball to play!"



On to the fun stuff! (look, her feet are off the ground! LOL)


A giant game of ring around the rosie with some of the campers while we wait for dinner



"Mom! Why are you STILL HERE????"



And so I headed to my parents to spend the night before making the 4 hour drive home this morning. I have class tonight and tomorrow, with Weds. being my only open day. Thursday my friend Jane and I will drive back up to pick up our girls, then Friday Angela has a birthday party to go to, then her dads, then Dean and I are having a......(insert gasp here)....much needed date weekend!

Friday, June 11, 2010

I brought it on myself, I think.

For the past (almost) year, I've been back in school, taking anywhere from 10-13 credits per semester, and maintaining a 3.6 GPA. (Which I happen to think is pretty good considering my age AND all the distractions I have in life!) What I think is interesting is that although I had a lot of homework, and sometimes it was a struggle to get things done, I never felt like the work was hard. That I had to think very hard to get it done. (well, except for the last 2 chapters of the algebra class I was trying to teach myself while in Europe!)

But about the time I came back from Europe, something happened. I'm not sure exactly what, but things are not going so smoothly. No, it's not related to the adoption. I'm only taking 2 classes, but one of them is supposed to be 15 weeks and I'm taking the condensed course in 7. It's a 3 credit class, so normally about 6 hours of homework per week if it were 15 weeks. Instead that one class is closer to 12 hours of homework per week. Oh, and it just happens to be about the philosophers like Aristotle, and those guys. Some of you may have noticed this before I did, but I've just discovered I'm NOT a deep thinker, and most of this material is WAY OVER MY HEAD! Based on my current grade, with only 3 weeks left in the class I'll be lucky to pass it.

Then there is Algebra. It's not COMPLETELY over my head yet. I've actually been o.k.  until this week, when we've started slopes and intercepts, and junk like that. I intended on spending a lot of time with the tutor this week, but I haven't had time! Alas, I have to take the ACT's this weekend, the practice test has A LOT of slope problems on it! UGH!

Here is what THIS week was like for me:

Monday:

  • Drop Angela off at school 
  • doctor appointment for me
  • 2 hours of class
  • meet with handman guy who's going to do some handyman type work around here. 
  • 4 hours of homework before I gave up and went to bed.


Tuesday:

  • Drop Angela off at school
  • 2 hours of class
  • shop for Angela's birthday party supplies (who committed me to this party, anyway? Shees!)
  • 4 + hours of homework
  • drive 50 miles round trip to pick up guardian dog.
  • spend an hour introducing guardian dog to the other dogs, making sure everyone gets along without problems.


Weds:

  • Drop Angela off at school
  • Drive 60 miles round trip to take said dog to eye specialist to get her eyes certified for breeding (they're perfect, THANK YOU GOD!)
  •  Come home and make house presentable for meeting with Angela's social worker
  •  Dean take Roman to different vet for different certification. (I'm sure you're dying to know this, but Roman had an appointment with the vet's HAND so he could get a semen analysis done. Fun! NOT!) 
  • 4:00 Tyler calls. He can't find a ride to our house, so I drive 40 miles round trip to pick him up so he can join us for Angela's family birthday dinner at Applebees
  • Go to said dinner (wait around for Dean and who went to wrong Applebees)
  • Stop at Target on the way home and exchange too-large birthday gift plus pick up gifts for a couple people at school that I forgot about.
  • Drop Angela off at home with Dean
  • Drive 40 miles round trip to bring Tyler home
  • 11:00 p.m. start my homework, and stop fighting my closing eyes at about 1:00 a.m.


Thursday:

  • Drop Angela off at school
  • Run back home because I forgot information that I need for the next appointment.
  • Bring TWO dogs to the vet for hip and elbow x-rays (necessary for breeding.) 
  • Bring both dogs back home
  • Fill out additional paperwork that must go BACK to vets later today.
  • Run to school for 2 hour class.
  • Run forms back to the vet clinic so they can send off xrays to the necessary places ASAP.
  • Go BACK to the other side of town to spend 2 hours with the math tutor. (huge help! THANK YOU GOD!)
  • Run home for a couple hours of homework time (waiting for rush hour to end to do next item)
  • Rush hour over, so drive 50 miles round trip to bring guardian dog back to her home.
  • Get Angela to bed
  • Look around and realize there is a party here tomorrow night (Angela's sleepover with friends) and my basement is a disaster. 


BUT WAIT, IT'S ONLY THURSDAY! Silly me, there are a couple days left this week!

Friday:

  • Drop Angela off at school
  • Go to doctor appointment for me
  • Drop off sports camp registration that I've forgotten about and is now overdue but they said they'd take it. 
  • Pick up stuff for my brother's dog that he can't get up there, bring it along on Friday.
  • Try to remember to follow up on Monday's appt. which means scheduling another one!
  • Stop and get Angela a birthday gift. (almost forgot the gift!) pick up a movie for the kids to watch
  • Dean will come home from work and make Angela's cake, cuz she's been asking for HIM to make it. (smart kid knows mom sucks at baking.)
  • Decorate for birthday party.
  • HAVE birthday party
  • While these lovely young ladies are enjoying some quiet time in front of the movie (AFTER the fun stuff we're doing!) I'll be putting in some homework time.


Saturday:

  • Up at 6:00 a.m.
  • TAKE THE ACT's!!!!!! 
  • Dean and Angela's PCA will send overnight girls home around 8:-9:00 a.m.
  • When test is done, come home and pack for Angela to go to camp.
  • Dean's family reunion on the other side of the city.
  • Make middle of the night Walmart run for whatever Angela needs for camp that I had forgotten about.


Sunday:

  • Drive 4 hours to Northern Minnesota to bring Angela to camp.
  • Hang out for a little bit while she gets aclimated. (ROFL, she's been saying all week, "You just drop me off, right?" as in "Don't even think that I will be seen with my MOTHER at camp!"
  • Drive 45 minutes to my parents home and spend the night there.


Now, you might think that once I drop Angela off at camp, my life will settle down a little bit. NOT ON YOUR LIFE!!!! In fact, it will get MORE hectic for about another 2 weeks. That's when my very difficult class is done and I can breathe a tiny bit easier.  But just a tiny bit, because things will ramp up pretty quickly again about the 4th of July.

Saturday, June 05, 2010

Medical Update

A few years ago, Angela started a medication that caused her to put on a lot of weight very quickly. She'd always been super tiny, and barely on the growth charts for children who have Down syndrome. I remember, just a few weeks before starting that medication, our developmental pediatrician told me we'd probably always have trouble getting Angela to gain weight.

Four months and 22 pounds later, (and 4 inches in height!) with stretch marks all over the place, Angela no longer needed to gain weight. Eventually we got her medication dosage just right so the weight gain slowed. She continued getting taller. She went from 9 years old and 42 pounds/42 inches to 13 years old 115 pounds and 55 inches.

In December her medications combined with her seizures became a problem, so we made some adjustments. The neurologist told us her new seizure medication would not only stop the weight gain, but she'd probably drop back down to her natural weight.

We've definitely been seeing her weight drop, but I haven't stood her on the scale in quite some time. Clothes that were tight on her in December are falling off. Her behavior specialist was here the other day and said in the two weeks since she'd seen Angela it appeared she'd lost even more. Yesterday as Angela was getting in the shower I ran and grabbed the scale.

99.5 pounds! She's lost 16 1/2 pounds! Wow, that's a lot for the small person that she is. No wonder her clothes are falling off! She now sits right at the 50% for both height and weight on the DS growth charts. Since she'll be starting swimming again soon, she'll probably loose a little more, which is fine. If you see her, she has a lot of "junk in the trunk". LOL She has so much more energy though! She'll run around the yard playing all afternoon, and a few weeks ago she ran the mile at school for the first time ever!

Let me just say, I'm liking this seizure medication! Oh, and her seizures have been well controlled too! LOL In fact, since December we've only seen two that we've recognized (one at home and one at school.) and one episode that we questioned if it was a seizure or not, but it was very short so we weren't sure. She also hasn't complained of a single migraine since starting this medication.

Summer is ramping up, and I have most of Angela's free time from now until August 5th all planned out. Remember, a bored Angela does not a happy household make!

Swallowing is back to being a problem. Ok, who am I kidding? Really the dilitation she had done in December only lasted about 3 weeks, but I just wasn't sure how much to pursue it, and finally have decided it's time to stop putting it off! ) We'll be getting some re-testing done, and planning another visit out to Boston Children's sometime around the middle of August to discuss the next option.

Space for one

Do you have an emtpy seat at your table? An empty bed? Then you have room for one.

Ok moms

Are you a mom of a child with special needs? No?  Well are you a MOM? If you're here reading, and you're a mom, or you want to be a mom, or your sister is a mom, or you HAD a mom, then you might want to read this. What an interesting perspective!

Please lift them up in prayer!






It's been a long time since I've posted about Kristen. Too long, in fact. At the age of 3, Kristen was diagnosed with Leukemia. She went into full remission, but relapsed when she was 7. She made it back into remission and stayed cancer free until 2009, when her cancer returned. She was in remission for a few months when the cancer returned for a 4th time. At the age of 22, Kristen had a bone marrow transplant, and yesterday reached the 100th day milestone.


Kristen's cancer is back.


Please pray for her family, as they have some very difficult days ahead of them. Please pray for Kristen as she fights for her life. My heart is just aching for them, and I can only imagine what they are going through. Kristen has been fighting this battle her entire life. No child, no young woman, should ever have to fight so hard for so long. Please visit Kristen's blog and let her know you're out here praying for her.

Tuesday, June 01, 2010

About that adoption

We actually do have an adoption blog, and have since I got back from Bulgaria. Unfortunately, I found out this morning it will be MONTHS before anything happens with this adoption. That means the adoption blog might sit stagnant for awhile. We're ok with that. Most adoptions DO take months (or years) it's the reason for the delay that is disheartening. I'm pretending that we are patient people, so humor me. You can find our adoption blog HERE.  

The Marriage Test

Dean and I met on August 22nd, 2003. See, us women remember dates like that. It's a fault of ours, one that drives our significant others crazy. THEY say we "remember everything". (because they don't realize sometimes we make the stuff up to to make them THINK they forgot something really important, thereby making them feel guilty so they do good stuff for us.)

That first fall, Dean went up to my parents house up north with me, where he suffered through the Spanish inquisition and passed all tests given by my parents and siblings. While there my mom said, "So who's hosting Thanksgiving this year?" and before anyone could open their mouths, Dean said, "We will!"

INSERT GASP HERE

"Umm HELLO??? I've only known you two months and Thanksgiving is two months AWAY, and what if I don't like you anymore by then? THEN who's cooking? Because have you BEEN in my kitchen and SEEN the sign that says, "I serve 3 meals: Frozen, Microwave and Takeout!" ????  So if "We" are hosting Thanksgiving that means "YOU" are doing the cooking!"

We did host Thanksgiving, and Dean did cook. My parents live several hours away so they don't get to my place too often. When my mom walked in my kitchen, the first thing she noticed was the coffee pot, "When did you start drinking coffee?"

"I don't. That's Deans. I think there is even coffee here somewhere. And I've seen coffee cups too."

My mom was in love with my boyfriend.

Later that night we joked that we would take this relationship one holiday at a time. You know, that holiday stress, especially when there are blended families involved, can sentence a new relationship to doomdom! Thanksgiving went well, but Christmas was right around the corner. AND, Dean had a trip to Mexico planned that he'd bought tickets for BEFORE we even met! Umm...yeah, he was surfing Match.com looking for someone to go along on the trip but he won't admit that.

We survived Christmas, and the Mexico trip...with all of his siblings and spouses... that trip was awesome, and my sister and her husband came along too!

In late February we were in our his basement watching TV when I decided the room needed some color. I got some of Angela's crayons (did I just say Angela had crayons here?) and drew a model for him of what I wanted to do in the room. The next weekend it was done, and the room was way cool!

So, the following spring (We're in spring 2004 now, by the way.) Dean's twin brother asked if he and is fiance could get married in our yard. Oh...wait. It was Dean's yard. I was just the weekend live-in girlfriend at the time.

Anyway, we Dean said yes to them getting married here. Then we looked around our his yard and realized there was a lot of work to do before anyone would be getting married in it! He let me design the landscaping project, and we had 50 tons of rocks delivered, which had to be carried by hand. Together we built a large boulder retaining wall (in the pouring rain) and then landscaped around our the pond.

Little did we know, that project was more difficult than any holiday we'd been through. One day, when we were just about done, we were surveying our work at the end of the day. "Honey," I said, "Someday I'm going to get married in this yard. Just so you know. If I don't marry you, well...whatever, I'm still getting married here. It's beautiful."

Surviving the holidays and the big projects wasn't about being nice to each other (ok, well there was a lot of that.)  it was about discovering a lot about each other. We discovered we both think the same way, and have similar tastes and ideas. We even like the same colors. It was also about communication, and being able to say, "Hey I thought you were going to grab that giant rock I just dropped on my foot that I'm pretty sure was your fault!" without killing the other person. And learning that  next time I needed to be clear about my needs, "Hey, I'm handing you this giant rock! Can you grab it before it drops on my foot?"

One year later, a year of holidays and a couple more big projects, Dean and I did get married in OUR yard.

This weekend, we advertised on craigslist for people to come get free rocks. Lots of 'em. 50 tons of them. We don't need the pond anymore. It served us for 6 years and we're done with it. But, like all marriages, we do need a project to keep us communicating and learning about each other, so we're taking out the pond and making it smaller and easier to manage. We're eliminating some things from our yard-our life-that we don't need, that we don't have time for, that are no longer a priority for us.

Instead we're adding something that is important to both of us. Something we're both ready for. Something that we feel strong enough in our faith in God and each other that we can do it well. It's called adoption, and we can hardly wait!