School Patrol

I have been meaning to blog this for quite some time, just haven't made the time. But I have to do it, because it is so cool. When we moved the girls to Cherryview, Bella found out that 5th graders can do a lot of things. She signed up to do video taped school announcements that everyone watches each morning on the TV's in their classrooms. She plays the trumpet in band. She takes her turn running the school store.

But she just couldn't wait to be on the School Patrol. Honestly, it scared me a bit, there is a major intersection that the kids run, but they do it exceptionally well. I have always been impressed with the school and this team of kids. So she signed up right away, for all of it.

On a whim, I asked the director this year if she would consider letting Anthony be on patrol, with a buddy or something. I thought it would be a great opportunity for him to be responsible and give him a sense of pride. Bless little Bella, she volunteered right away to be his buddy, and the teacher thought it was a great idea!

So, here is a shot of his first day along with little sister. He has been at this same post each time he does it, and other kids are working with him too. I used to help during training, but now he is totally on his own, he know what he is to do, and he does it well. Bella even goes to that big intersection. And boy is she proud when she does it too. The really cool thing I never expected to happen is all of the social skills it would provide for Anthony. Most of the time a huge portion of the kids are high-fiving him as they walk by and saying hello or goodbye to him. He has opened up so much more and it has helped him huge in the department of greeting people. He beams. (And I usually get watery eyes.) We are soooo proud of them both!

He is also a boy sick of his mother taking his picture at times. This is one of those times. Camera came up, and he shot a look the other direction. Oh well.

The other big boy thing he does: he does NOT want me to walk him in to school anymore. He jumps out, holds up his hand for me to stay, and says "I got this mom".

I still get teary eyed over it.

I guess it catches me off guard.

I think I forget that even though he is not like other kids in so many ways, that in some very real ways - he IS just like them. He wants to be independent and responsible too.

I guess, like other moms, letting go is part of deal. It's hard, it sneaks up on you, and it makes you very aware of the "moment". As he runs off to school, I am left there in the car watching. And in that moment, in my mind, I try to catch up to him. The image of him as a little boy begins to change, it has to grow up too. Because he is.

With the right attitude, letting go can be very exciting. It symbolizes so much more for him. It means he is becoming. No matter how long it has taken him to learn the things he has, he has done it. And now he is making his path. The milestones we worked for have come, and boy did he WORK for them. Now, he is taking those skills, adding to them, and moving forward to the person he is meant to be. The bike riding, tag playing, football watching, lego building, patroling, and church going kid. And you know - I think he's "got this".

And then there was One.

Last week was a big week across Minnesota.

The first day of school. Backpacks, pencils, new shoes and one of the few pictures I take these days that visually records the growth of my children from year to year.

This is quite a year for our family. We moved the girls to the same school as Anthony. And even though I was pretty uneasy about the move for the girls - it has turned out to be the best thing we could have done! I knew it would be more convenient for us, but I had NO idea how completely wonderful it would be. To have them all in one place. To hear that they see each other now and then, to hear about the teachers and what they are doing. I just absolutely love it.

This is our first day...

We have 2 fifth graders and a 1st grader.

This year is big for another reason.

Emma is full time now.

She was afternoon kindergarten last year, but now they are all there, all together, all day.

And now it's just me.

After 10 years... it's just me.

I know I should be thrilled. Lots of other people envy my "freedom" and "time to myself".

But I am not.

I am getting things done, things that have been on my to do list for years, and it's nice I guess. But this is just so wierd.

I have cried here and there, but not too bad. I miss them, but I am so very happy for what they are doing and embarking on in their lives that I can't be too sad about it.

I just didn't know it would be like this.

I went to Target last week and saw all these moms with their little ones in the carts. Some were in their jammies, some had red lips and faces from a slushie, some were looking at the halloween light up attractions, and some were looking at books with goldfish cracker crumbs on their shirts.

And I got sad.

I got sad because that's not me anymore.

I thought of all the times I had just wished for them to sit still in the cart so I could just be done, just look quick at the halloween stuff because we had to get going, just eat another cracker and look at the cow jump over the moon while I go over my list.

And now I watch.

Just me and my cart going up and down the aisles with my list. A list that used to have little scribbles on it from some little one's hand, and it's just my own now.

And I try to let go of that time in my life, in their lives, and I try not to cry.

Oh how I wish I could tell these moms to slow down and treasure this time.

Don't wish for the time when they are gone, don't hurry them up,

don't "can't wait" for when they can...

Enjoy it now, because once it's gone, it really is gone.

There is no going back.

One day Goodnight moon will be replaced with chapter books, goldfish crackers with gum, and red slushie lips with lipstick. And you'll wonder why you wished it to happen faster, because even though other moms told you it would go fast, you just really didn't get it until it was too late.

After 10 years, now I shop alone, I eat alone, I read alone, I have full phone conversations, and I finish things.

And I feel alone.

I greive for afternoon naps on the couch, for simple stories, for learning about colors and new words, and for games of Candyland.

I should be thrilled, but I am not there yet. Maybe in the weeks to come. For now I will try to adjust, try to enjoy, try not to cry, and try to see what the future holds for me next.

For every thing there is a season. And I suppose the seasons are changing for me.

Counting the Blessings

I couldn't have planned a better week of vacation.

In fact, I didn't really even plan this one.



About 18 months ago I heard about this camp. Totally forgot about it, and then was reminded of it at the gym one day while watching a re-run of Extreme Home Makeover - where they were remodeling the home of this couple and some of the camp buildings of Camp Barnabas. This couple started a camp for kids with special needs to get the "camp experience", with the added twist of being treated with a kind of love you just don't see enough of. This place is based on the premise that different is normal, and normal is different. I remembered that this place let siblings go too, so when I got home I called.



I count blessing #1 - the info, #2 - the airing of an old episode I can't even find on you tube to show Shaun, and #3 - the off chance that I was at the gym to see it.



Blessing #4 came when I realized that this place books up a year in advance and we were only six months out for one of the 2 most popular weeks of the entire camp summer - when siblings are welcome too. AND we got the last 2 spots!!



Blessing #5 was the fact that we also received a partial scholarship so that they could attend, as we were trying to sell the house at the time.



Blessing #6 was that everyone was well enough to go, especially since Bella got sick just 3 days before we left.



Blessing #7 was Shaun getting all the time off from work. Maybe that is more like 3 blessings.



Blessing #10 was a free hotel from a friend for one night.



Blessing # 11 was Shaun's bonus check that finally came in days before we left.



Blessing #12 was the free stay at a condo in Lutsen, MN from a guy Shaun knows. This is the only reason we would make the trip from Missouri to Lutsen and back. (It really was more cost efffective.)

There really are too many blessings to count. This list goes on and on. And we all had such an amazing time.

Emma's trip could be referred to as The Catch of the Day. Each day she caught some great times. She caught a movie, she caught fish, she caught frogs and minnows, she caught a ride on a tube behind a jet ski, she caught a nap here and there, she caught a ride in grandpa's semi truck, she had to catch her breath after Uncle Chad took her on a huge scooter ride to a park where they played and caught a game of kickball - and then scootered all the way back. And she scored an ice cream cone for lunch with grandpa. She had a great time, but was more than thrilled to be back with her family and as it turns out - having a brother and sister is pretty great!

Bella had a fabulous time. After we got Anthony settled, we went to see her at her cabin and she was already moving in. She was so excited. Although I heard more about the animals at the petting zoo, the horses she rode and the dogs that lived there than any names of other girls, she still talked more than I have ever heard her go on. She made some friends and can't wait for her sister to come next year because they might be in the same cabin. She had a great first experience and is very excited to go back.

Anthony's trip was more amazing than I could find words for. He really did NOT want to be there at all. We tried everything, books, pictures, encouragement, our own excitement - nothing worked. While waiting in line, he hid his face in his pillow when the camp people came to give us information and get our campers names. Yet, these people just kept telling Anthony how happy they were that he was there and how they couldn't wait for him to have so much fun. No one seemed at all thrown by his obvious discontenment.

As we pulled in to the drop off, the volunteers were all yelling and cheering on each camper as they arrived, like 200 of them. I got panicked as I heard them from 4 cars back, because I knew that would push Anthony over the edge. But instead, as we pulled in, the entire crowd was down to barely a whisper and were doing the sign language applause (waving of the hands in the air). Somewhere I must have written down his fear of loud noises. The tears started there - I was in awe.

It was SUCH a nice gesture and thought - but it didn't help him at all.

As his CIA approached, a 16 year old from Denver, Colorado - Chase, and one of his cabin counselors, Eric came to get him - he absolutely was NOT going with them. I offered to help. This part sucked!
I had to pull him out of the car and push him screaming and crying up the hill to his cabin as Shaun drove off to park the car and register the kids. It was 95 degrees out and this little guy isn't so little at 90 pounds of sheer terror. I got him in and talked with him and Chase and gave him more "hints" and ideas for helping Anthony.

As "goodbye time" drew near, I had all I could do to keep it together. But when this young man looked at me, with tears in his own eyes and all the sincerity in the world and said "I want you to know, I prayed for this, and I really wanted to be with your son. I can't wait to spend time with him." I was done for. So while I did all I could to fight the tears, Shaun took the time to say goodbye to Anthony. Then I was up.

At first he didn't hug back, but then he hung on for dear life. Arms tight around my neck, I asked him if he was sad. He said yes, so I told him that I would be the sad girl and he could be the happy boy, and then he looked at me and smiled. One I won't soon forget. I told him to show Chase that smile and he did. Then I could go. He asked to go home with me and dad and I assured him he would on Thursday. We did that twice and then we parted. As I walked out the door, I turned and looked back to see him talking with Chase, and the cabin mom and he seemed ok. So I got out the door - and lost it completely. I hoped in every way that I really took all his sadness, I know I didn't, but at the time it sure hurt like maybe, just maybe, I did.

I found dear Emily next. The one who comforted me prior to coming there. Apparently I am not the only mom full of concern, as she soon added me to the "mommy check-in list". They check the kids at lunch and then give the report to all the moms who call in after 2. Did I tell you how awesome this place was?

But I am a very impatient, over protective mother. So at 9:00, I called. And hoped Emily didn't answer. I got Lindsay, who said that she was standing right next to Eric, one of the cabin counselors who was then put on the phone. He answered the phone - Hello, Mrs. Hinson. Loved that. He went on to tell me Anthony was playing tag and laughing just a few minutes before I had called. I cried while trying to thank him and wished him a good night, then he says "have a blessed week." Seriously, I couldn't get over all these kind people. I told Shaun - I want to go to Camp Barnabas.

Anthony did have fun, and after a few more "mommy check-ins" I learned that while getting ready for bed, he signed "I love you" to Chase. After that, I knew all was well. And for the first time on our trip, I didn't cry before falling asleep that night.

Pick up was the best. Anthony ran to us and hugged us so tight, I swear he lifted us both up. He was so excited after running to hug me, then running to hug Shaun, that he just ran over to this random woman behind Shaun and hugged her too. Then he realized he didn't know her and ran over to us and we all hugged again. He and Chase showed us their little hand jive thing they had going and they hugged too. Chase, whose time at camp was also his first, thanked us for Anthony being there, how he changed his life and even wanted to request to be together again next year. After that drop off, I was suprised Anthony didn't have a different CIA when we came back.

I was so stunned by this place, and this young man. This has been the most amazing thing I have ever seen for Anthony. One place where over 200 people were so thrilled he was there and so happy to meet him. Like he was this gift, just for them.

It hit me like a ton of bricks.
I haven't stopped crying since.
If you call me to ask more about it, you'll get a crackling voice.

There isn't a place, anywhere, like that for my son. This world is made up of more people scared and uncomfortable around him than those who actually care and reach out to him, no matter what. But for one week, he was the kid everyone wanted to be with, the kid to get to know and play with. For one week he was "normal". This place wanted him there, and they showed such a love to him that little miss wordy here can't even begin to explain it. It was such a great glimpse into a world full of acceptance that I had never seen. A world like that, on a daily basis, full of that sincere of love, was the most powerful thing I ever experienced, and I am not the same person I was. It was more than inspiring. What a different place this world could be!! Knowing that there are 200+ 14 to 18 year olds out there with that kind of love in them, sure gave me a hope like no other.

And Anthony? He says he'll go back, that Chase is his buddy, and he even acts more like... a guy. I can tell he's been hanging with "the guys" for a week. It's truly taking my breath away. It was so cool to see him high 5 all these guys as we were leaving, the hugs, the "later dude"s. I had no idea that this would turn out the way it did. I half-expected them to call me to come back to get him. I never expected to be so touched and affected.

There were really just too many blessings to count.

I have to go tend to my little "gifts" now. So I'll blog about me and Shaun on the next one.

Prayer Request PLEASE

For these two cuties - May they have a great time at camp!!

I am sure Bella will.

Anthony, on the other hand, that is another story.
We've been talking with Anthony about the camp, and he absolutely does NOT want to go. Every time I bring it up, he gets mad and says "no camp".



I keep trying to convince him he will have fun. We went shopping for things together, we've been packing together, Bella is putting on her best cheer and so am I, and he has done great for those things. Dad came home last night and Anthony was STILL awake. But he was SOO happy to see him, I used it to my advantage to encourage Anthony to tell Dad about the camp. He actually seemed more than happy about it while telling Dad. And dad did an awesome job acting really excited and happy for Anthony as if he was hearing all of it for the first time.



We went online and looked at pictures of the camp, the things they can do, and even watched some videos on You Tube of the events and things they do there.



With each one... "no camp!!"



I am fearful again.



What if he shuts down the whole time?

What if he just sits on the side and watches and refuses to interact the whole time?

Will he be able to do the activities after a day or two?

Will he cry?

Will he try to leave?



None of these are unfounded, he's done them all before with other things. And this thing is just so big.



Oh, did I make a mistake doing this??



I have this awful vision of them having to hold him while I "escape".

I am scared that he will be so anxious and full of fear and that he will not really understand what is going on.



And I will have to be so strong.

Because if I let one tear well up, he'll think something is bad and then he really won't stay.

I can't cry.

God help me on that one. I have to just make it to the car.



So, if you're the praying kind, please pray for strength and understanding for him. For peace and calmness too. I don't mind if he doesn't participate in everything. I just want him to relax and not be full of fear for a week.



And if Shaun and I are going to be able to relax at all, we can't have the tearful, 'don't go mom and dad' scene. Please God, please, wrap your arms around Anthony, put him with a patient and understanding CIA, and please, please, please - let him have fun.



I am working on a picture book for him that I hope to finish tonight of the things they will do, to prepare him, a countdown for him of when we will come back for him, and photos of the family in case he misses us.



I so hope it is enough. If anyone reading this has any other ideas, please let me know. Otherwise, please pray a little something for Anthony.



If he doesn't have a blast, I am okay with that. I just really, really don't want him to hate it.

Thanks! D

Bitter Sweet

The defintion of Bittersweet is the experience of both pleasure and pain simultaneously. Our family is made up of many "bittersweet" moments.

It is bittersweet that my son experiences things he should never have to, yet because he does, he touches many lives around him.

It is bittersweet that my husband is gone all the time, yet he has a job that pays well enough that I can stay home with our children.

It is bittersweet that my baby is going to attend school all day next school year, and I will be left alone. Yet she will make friends, and I will embark on the next adventure in store for me.

It is bittersweet that all my little ones are growing up. It's exciting, yet I so miss their "baby-ness".

As the end of this week approaches, bittersweet will be the theme again.

A few months ago, I signed the kids up to go to a camp. We leave on Thursday. Because Emma isn't quite old enough, she will be doing the "grandparent tour" going from my mother-in-law to my parents, and spending a day with my grandparents too.

But the other 2 are going to camp. We drop them off, in Missouri, on Friday morning and go back to get them the following Thursday.

Camp Barnabas is a Christian camp for kids with special needs and each week is devoted to a certain type of disability or cancer or other specific type of need. Two weeks out of the summer are selected for kids with cognitive disabilities AND their siblings.

So Bella and Anthony are going to camp.

They will swim, ride horses, do crafts, have themed costume parties, archery, rappelling, nature walks and rope courses and a ton of other things. They will sleep in air-conditioned cabins with their CIA's. There is a doctor and nursing staff on grounds 24/7 and they've seen and done it all.

So when I called today to make sure we were all in order, it started to hit. I cried to some lovely woman named Emily who reassured me through my tears and motherly worries, that Anthony will have fun. That the pool is at 0 depth so that he can get in gradually, that his CIA will be with him all week and that they have picture systems in place to help him know what will be coming next. I talked to her about how he will say no to everything, but that they need to keep trying to get him to do things, and she sounded as though they've dealt with so much more. I got off the phone and realized that the two things I was so worried about, were going to be fine. He really will be cared for, and he really will have fun.

But do you know what that means??

I can relax.

I haven't relaxed for 12 years.

I don't even know how to do that.

I haven't a clue how to walk away from him in the highly experienced, trained and qualified care of someone else. All I can do is cry. I can't tell if it's the experience for him that is so exciting for me, or the weight off my shoulders that is creating the waterfall I can barely see through right now. The comfort of knowing he will be understood, that his sister will be there to help, but she might not even need to. That he will make friends. That he will do things that he never has. That he will grow so much through this experience.

Do you know what CIA means? Christians In Action. How great is that? Most of these volunteers and the paid counselors have been campers themselves! They go through major training and really are equipped for my son.

I pray that they really will comfort him and that HE will relax and enjoy himself. And I pray that Bella will have as much fun as she seems so very excited to have. I worry so much less for her. There will be horses there, she will have a blast!

Driving away will be soo very bitter.

But the sweet part?

There are many of those too. Besides the kids having more activities and things to do to keep up with, my dear husband and I will be together.

Just us for 7 days. Seriously??!!!

I will get to be with the man who really does think I am talented, who really does think I'm beautiful and with all the things we could do or see between here and Missouri, really just wants to just see me. I miss him so very much.

Although he does work, he is there constantly and works so hard for us. I respect him so much for it. I know it's killing him, but he does it for us. He doesn't like anymore than I do. He leaves by 8 or 9 and doesn't come home until 11 at night every day. He had four days off in June and 2 so far in July. And I really just miss him. I really just want to look across the room and see him! I feel so blessed to get this time with him, a little guilty that the kids won't get this time with him too, but, wow, I feel so grateful.

Our honeymoon wasn't even this long. We only know that we are driving to a free condo up in Lutsen for 4 of the days. (I know, crazy, but economically, we really are saving $$) Besides, crazy works for us. We got married almost 14 years ago after dating for 2 months.

So, we'll hike, see Lake Superior, go on a canoe tour, picnic. Anything! There is only sleep and one other thing on the agenda for the week, ;). After that, it's just icing on the cake!

And then we will go get our babies and go back to the real world.

Bittersweet.

Bella's Locks of Love

Bella's been trying to grow out her hair to donate to Locks of Love. She started 4 years ago as she entered 1st grade, and now has cut it all off prior to going into fifth. Here she is with a great smile at a park we were at recently. Right before the "Big Cut".

And there it is, the new do. We all love it so much!! So cute, fun and spunky. That's my girl!

Her and her brother, he's still checking it out.

I find her to be just so beautiful. Inside and out she sparkles and shines. And that's the 'long and short of it'.

Happy 10th birthday Isabella - your fabulous!!

The Key Is...

As a parent, we all have "tricks" up our sleeves.
I think that over the years, Shaun and I have learned that tricks won't get it done.
You need the "key".

Yesterday, we took the kids to see a movie. Anthony's first movie in the theater was "Cars". That was 3 or 4 years ago. I know it came out on his birthday, but I can't remember which year. The tricks we used then was to bring Grandma and Papa and load up on pop and candy, all of which were a special treat back then, (living in Iowa). I tried again later for a birthday party, used the trick of popcorn and pop, we went into the theater and he couldn't do it. He hung on to me for dear life. He was so scared, we gave away our treats to the birthday boy and had to leave. We now know, the tricks aren't what did it. The "key" was to get there before they turn out the lights and start up the noise. Yesterday we went to "Toy Story 3", which we all loved. Bought root beer and fruit snacks, just in case. But he was fine. We got there, he was scared, but he went in and sat next to his "silly buddy boy" (he and dad's little name for each other). And he did great. He didn't even drink the pop or eat the snacks until we were in the car on the way home. He sat and waited through all the previews, (wow like 25 minutes) and when the lights went down, I half expected him to bolt, but he got excited and was ready to see Buzz and Woody light up the screen.

We have lots of others too.

The "key" to get him to focus on what you want him to do, is to make sure he knows you understand him and his wants first.

The "key" to keep him relaxed and calm is exercise.

The "key" to get him through a doctor appointment that involves a shot, is to let him know that it's coming, but he can choose to sit on mama's lap instead of having all the "helpers" ( about 5 nurses now) hold him down. Another "key" is to remind him that we can go to a restaraunt after he makes it through. (ok, so maybe that's just a plain bribe.)

The "key" to getting him through his frustrations, is to pull him aside, and let him "talk it out". (Not that we understand much of it, but once he's aired it out, he breathes better, wants to be held, and sometimes will cry, but then is fine again.)

The "key" to making him light up is to include him in cooking, he LOVES to grill, any "job" he can show his ability to be responsible. He even loves to do laundry.

Even the girls have the "key" of cheering him on to a new experience with their own "dramatic" excitement, that he tries a lot more things that Shaun and I could ever get him to do on our own.

Sometimes with all the "extra" things we do with and for him, it feels like we must carry a keychain resembling a set of janitor keys. Too many to count.

But like most of us, sometimes we can't find our keys. We look and look and look, but we just can't find them.

Tonight, like each and every day, I searched for the "key" to communicating with him. There are so many times where I feel like we are cracking the code on this, but then nights like tonight happen and remind me how far away we are from the "key".

He spent, bless his heart, 20 minutes trying to finger spell and say the words he wanted me to know. So signing and talking weren't doing it, so I went for this computer thing he has.

Honestly, I hate the thing. It's heavy, cost $3000.00 (so I'm too scared to take it anywhere) and is so complicated that I just don't see the practicality of it. His therapist thinks this will be soo very helpful for him, but I am so full of skepticism on it. He doesn't really even like it. But maybe because I don't encourage the function of it for him, he doesn't see it's benefits either.

So I go get the thing and he taps the onscreen buttons to say "I want to write". So I go get him a pen and paper. When he was finger spelling, he was doing it phonetically, which seriously cracks me up everytime b/c it's so cute, and he kept spelling "r,a,e,d" and "r, a, i, i,". So he gets his pen and paper and writes, with help from things in his room. "Road" "Anthony and mom". Then he uses the computer to get the word "lego", signs "build" and points out the "trailer" for the fire truck for us to do together.

It took over 40 minutes by the time we got it figured out through the use of sign language, pen and paper, a computer, and pictures in his room to tell me he wants to build the trailer to his legos fire truck with me tomorrow.

He is 12 now, and when it comes to getting to really know and understand our son, we still have just our tricks, and dammit, I would give anything to find the "key."

Yet for now though, the tricks work. And I cherish them. Because between all of these, he still manages to make me laugh, melt my heart, and he really does shine past that "lock" that keeps him inside.

Singing a New Song

Whew, a bullet is dodged.

Anthony had an echocardiogram today. Since last month we did an EKG and the blood draws, they did not need to be repeated. So he only needed to do an echo besides the physical exam today. Although he signed that he was scared the entire time since we left the house, he made it through. Didn't hurt that there were no shots, and that he got to watch a movie during the echo.

They got great pictures and all showed to be normal and healthy!!!!!!

The great things to come out of it:
1. We ruled out any heart problems.
2. We have a baseline record for any future concerns to compare it to.
3. There were no signs of cardiomyopathy.
4. There is nothing to indicate that he will have any onset of congenital heart conditions commonly associated with Down syndrome, ever.

5. We probably racked up enough to close out our family deductable, and can now get any surgery we think we might need for "free". Shaun's back or hip, my knees... wonder if laser eye surgery could be considered. Just kidding.

Anyway, the bummer is that we still aren't sure what is causing these episodes, so we are back to the drawing board. Funny thing about figuring out what's wrong - I didn't want it to be his heart, but knowing the problem to be able to fix it is still the goal, and now not knowing is a little frustrating. But again, it's not his heart.

When his doctor told me on Monday that this was the next step, I said that I would have rather she told me he needed more snacks. Ironically, I think we are back to that. this keeps happening at gym class, 4 hours after breakfast, and probably any drink. So I am sending a water bottle and we'll see if that works. It has never happened here, so I can't say what the surrounding circumstances are, so we'll see.

I guess I'll have to hit the internet, see what other parents have experienced.

As for today, the scary stuff is over, and we have "broke on through to the other side" (see previous post from this morning).

So, our new song is...
"If you're happy and you know it...CLAP YOUR HANDS!!!!!"

Thanks everyone for all the prayers!! Powerful stuff!!

The Word of the Day

Every day, Anthony has a "word of the day". He shares with his class the word, the defintion, and a picture to illustrate the word.

Today's word, at our house is Trust.

The defiintion is "firm reliance on the integrity, ability, or character of a person or thing".

Here is my illustration. Proof that I have had to "trust", many times before the integrity and ability of many doctors, teachers and whoever else. But mostly in God.
On Monday I cried at what we have to do today, and yesterday I was calm. Resolving that everything will be okay.

But today, I woke up and the war within began.

Today, we take Anthony to the St. Paul Heart Clinic to have a "cardio workup" done. We know an EKG will be done, blood tests and an echo-cardiogram. What else? Not sure. It is just the next step we are being told to do. He passed out at school, for the second time in a month, and protocol dictates that we get his heart checked out. So today, we go.

The war within me raged once my alarm went off, and I woke up, and I realized what I have to do today. I began with awful negative thoughts, wondering what might happen, conjuring up worse case scenarios, (WHY do I do that to myself??) I can jump the gun so fast. Too fast.

And then I fought myself with the positives. It is still, right now, just another doctor appt. Yes, many things lead to a possible condition. The passing out, the fact that heart issues run in the family, and the most obvious - he has Down syndrome. This kind of thing sort of comes with the job. But right now, it is just another appoinment. We don't know anything, we don't have to be scared in this. (I am winning this war. And it feels awesome.)

I resolved yesterday that one of two things will happen today.

1. They will rule it out.

2. They will find something, and they will need to fix it.

So I trust.

I have to.

I have to trust that the doctors in one of top clinics in the country will take care of my son.

I have to trust that they will get a closer to an explanation.

I have to trust that, just like many times before, we will stand strong when it is all said and done.

I also have to trust, so that my son, who will be very scared today, can look to me and Shaun, our faith, and trust...us.

Today, there is a song. Well, part of the song. Because I don't know the whole thing and I really only need the one part anyway, and it is playing over and over in my head.

I love that God can speak to us anyway He wants to.

Today He is using The Doors.

"Break on through to the other side. Break on through. Break on through. Break on through to the other side."

I have been through a lot, so has Shaun, so has Anthony, and so have many others. But on the other side we can see what God saw all along. The way it was all meant to be. The way things can all fall together, like someone had it all planned out. (Because someone does). The way that when, on the other side of it, you see that you weren't alone, even if you felt like it.

Just like a friend of mine said. I can trust that He will be there, because I can look back and see that He always has been.

So today, I will trust.

And we will "break through to other side".

The Books that Changed it All

I have been ridiculed for my choices of books by many people in my life.

I like books that help me learn to be a better person.

I don't necessarily read "self-help" books, (they usually just cause me to "help myself" to a load of guilt and disappointment) but I do read books on parenting, marriage and life. Those are my life. I am a mother, a wife, and a woman. I went to college for psychology, read a ton of books for that - how is this any different? No, I don't get paid, but I am giving myself a PhD. in this. I want to do it well.

Recently I began reading a few great books.

I read the Shack, and I started to free myself of the legalism pitfall of Christianity. I stopped trying to please God with a checklist of being a "good Christian woman". I began to see God as a friend, someone to get me through this crazy life, and not as someone I have to impress. I realized a very freeing thought - I don't have to worry about "being" good, I just have to, each day, DO something good. Doing good things helped me let go of the "checklist" and give myself freedom in each situation I was faced with. It gave me a choice, instead of forcing judgement on myself so many times a day.

Then, I read "Eat, Pray, Love". This book brought me closer to myself. I realized that crazy, run-around thoughts in my head can be normal. Well, common - but definitely not crazy. this woman worked through a year of defining herself, on her own, not by the standards of the world. She helped me ask questions of myself that needed to be asked. Am I living the way I want? Am I self-respecting, self-nurturing, and in touch with my own wants, dreams, and desires? Without being selfish. Unlike the author, I do have a marriage and three children to care for. Can I even discover these things about myself without sounding self-absorbed? I have discovered, at the very least one answer - That I MUST ask and answer these things about me. And as a plus, in doing so, I will be a better mother and wife.

But then I got a hold of the book that all the others have prepared me for. I am reading "Women, God and Food". This book has lit up every fire in me that was iver put out due to life, circumstances and change. I feel lighter, more calm, and even blissful. My life will NEVER be the same. I am beginning to see the amazing power of self acceptance and self-respect. Better yet, I am beginning to FEEL it. I had a day of ordinary things, but felt extrordinary in it. I felt freedom and joy, I felt love and contentment. I had a day, without judgement and self-loathing. I had fun. I had hope. I had me. For a day, I had what I have dreamed about for years - the acceptance of myself. As I am.

And for once - I do not feel the need to change myself to be better.
I feel the need to break through to be the me I always was, but never let exist.

This is why I read the books I do. Because being happy in this life, no matter what it throws at you, is worth the investment of doing what it takes to find true happiness. It's always been there - why NOT go after it?

Two for One Special

It started out as "Happy hour". The kids were playing with the neighbor kids, having a grand time. I believe "Horsie" was the name of the game. Emma was the rider, Tyler was the horse. It must have been a rodeo, but I don't think Emma made it the 8 seconds.

I was putting away the laundry when I heard Bella and the neighbor kids run in and begin yelling for me. They were all so excited and speaking at once as I came down the stairs to see what all the fuss was about. All I could make out was "Emma, blood, tooth, and a lot of blood". I followed them over to the neighbors and there was Emma was in the care of their dear grandmother who watches over them.

They weren't kidding about the blood. There was a LOT of it. We've lost a lot of teeth in this house with three kids, but this was the most I've ever seen. Sure enough, there it was, the top front tooth, been loose for months. We were all so happy and full of yells and excitement congratulating her.

But then Edna says, that other one is about to go too. As we all calmed ourselves to see, it got very quiet. We could have heard a pin drop while we watched her wiggle it with her tongue, but instead we heard "it". We actually heard it grinding. Ugh. I tried, to no avail to yank it out, so Edna got it. Poor little Emma, her eyes were so big, but her face was so scared, and she was so quiet. So here she is, now two teeth gone, and bleeding all over the place, and she goes over and hugs Tyler for helping her get her teeth out. Tyler's head is okay, but she'll need to wash her hair.

So here is little sunshine, all cleaned up and toothless.

The neighbor boy Carson and her play FBI Agent almost every day. So, since Miss Emma was such a sport, went through such trama (boy, are her gums bruised too), and lost TWO teeth. She and her partner will have fun with the walkie talkies the tooth fairy will deliver tonight.

Mother's Day

As I watch them every day, they amaze me with their love, acceptance and joy in the other.

We spent our day in Eagan at Lebanon Hills, one of our favorite places to go,

on a Nature Hike (as we like to call them).

Bella created a "Scavenger Hunt" list and she marked off all the fun things we found. From flowers to puppies and all the tracks and animal homes in between.

Her simple joy and beauty take my breath away.

Now 6 and almost 10, these two are growing faster than I am prepared for.

Here was a burned out hollow tree, they all "just fit".

What a treasure find.

After that we went to Shaun's restaurant to eat. This mom sure doesn't want to cook that day, (or any day really). Plus, then we could see dad.

Grandma Hinson joined us for the day and we were all nostalgic of cabin campfires

as we roasted marshmallows for smores - AT the table.

WAY COOL.

And yummy.



Another wonderful day celebrating the three gifts I was honored with.

Now almost 12, 10 and 6, this day has gone from coloring and playdough

to 2 hour hikes and fires.

Can't wait til next year.

I hope all the wonderful women out there enjoyed their day.

I sure did.

Hallmark might have created it, but my kids define it.
Thanks God, for thinking enough of me,

to give me them.

Aww...

My little Emma. The child is such a gift.
Just a quick note today to share her thoughts, and remember them later, as I tend to forget.

We've been listening to country singer Carrie Underwood lately. I don't have a radio in my van, the antenna came off in an ice storm in Iowa a few years ago. So we buy our tunes and I STILL haven't spent on CD's what it would have cost me to have it fixed. Besides, this way, no commercials, and not being totally aware of the awful things that happen in the news of our world isn't so terrible.

So Emma and I are getting into the car to go to school, and as she buckles up, she makes her song request. With a smile and a please. She wanted the song, I believe titled, "Temporary Home" by Carrie Underwood.

A beautiful song. I still almost cry every time.

And Emma chimes in and says, "Mom, can we listen to that Townhouse Song".
I DID cry at that one.

I love that kid.

Her little innocence always brightens my day and reminds me, today, that this time in our life, this time in our townhouse, is just temporary.

My Gambling Problem

This is my baby.

One of my all-time favorite pictures of us.

He changes my life, everyday.

I have a dream.

To one day write a book.

Well, actually, publish a book.

I get a few ideas here and there. I really hope to do it one day.

For the fun of it, I'll share an idea I had today.

If I were to write a book that would include the following story, it would be entitled...

"My Life as a Poker Mom - Dealing with the Cards."

(Or something like that.)

A few months ago I shared our story of Anthony's upcoming surgery. Which was scheduled for Monday. After the news, I resolved to quit my housecleaning job, make a "recovery - friendly" home (since we just moved), prepare for childcare and get ready for a week in the hospital and 8 weeks with him in a cast and a year of therapy. And so we set out.

But, "just in case", we scheduled an appointment for a second opinion, as this surgery and recovery is very serious. Many encouraged this. I wondered.

I wondered... why go through a second appointment to hear the same news.

Or worse... what if they say NOT to do the surgery.

We went through major tests, x-rays and measurements. This surgeon never wanted to do any surgery until after those tests were done. I figured they proved serious enough to change his mind and it was a done deal.

But... against my better judgement, I rolled the dice and made the 2nd appointment.

I mean... what are the odds that his co-worker would disagree with him?

Pretty high I guess.

Not only did he think that Anthony didn't need the surgery, but that if he did, he would choose a totally different one.

What kind of "hand" is this?

Do we roll the dice again on a third opinion?

And do what, break the tie? No thanks.

I'm in a big enough tailspin.

This is my kid.

One doctor says it will affect the severity of his future arthritis (which is a given anyway).

One doctor says his hip won't actually pop out, unless he falls really hard.

One doctor says that he could just be used to the pain he is in and can't tell us about it.

One doctor thinks if we do it now, he will heal faster, another says one leg could grow longer than the other if we do it now.

And sooo many other things, no need to repeat them all.

I don't know WHO I would lay my money on. (If I had any.)

But this is my kid.

So we now have 4 doctors involved, his pediatrician and DS specialist got copies of the reports and are waging in too.

Since the stakes are so high and no one can place a sure bet here, we have decided to postpone the surgery, if at all, or if even the same one, until the fall.

We need to monitor him much more and make more accurate observations for how it affects his daily function, before we can be sure that this surgery is right for him ... or not.

So we wait, and watch,

and pick up the cards we are dealt.

And we try to gamble on how this leg will affect a future none of us can predict.

I am reminded of a song I used to sing when I was a little girl

in the backseat of the car along with my parents...

I will need to "know when hold 'em, and know when to fold 'em.

Know when to walk away, know when to run".

I have a gambling problem.

First of all, I don't play, I can't keep track of all the rules and I am in over my head.

(Can't you tell, I am making references to cards AND dice.

- Much like my parenting - I have no idea what I am doing.)

I want to "know", that if we put Anthony through this, he will get the big payout.

I want a sure thing.

Do we "walk away"?

I want to "run".

This is my baby.

How does any parent actually choose this?

And so begins the "shuffle".

Anybody know where I can find the rule book?

A-Haa - Moment

I had a "a-haa" moment today.

For tax purposes I had to add up all my out of pocket expenses and mileage for

Doctor appointments for the family.

We drove 1908 miles last year for a total of 99 appointments.

That is an average of 8 appointments a month.

Now I know why I feel like I am always running around.

A-HAA!

This is my little Emma. She sparkles and she shines.

And that hair goes with her personality so much.

She got her haircut recently and the hairdresser "straightened" it for her.

It was fun and cute... for a day.

Like playing dress up, except with hair instead of crowns and twirly dresses.

But wow, does she look different!!!

We brought back the curls after one day of wearing it straight.

That was plenty.

She said that curly was better than straight. Bella interpreted that to mean in general.

(Bella has stick straight hair, and the stylist curled hers, of course it did not stay.)

I explained that Emma just meant she liked HER hair better curly,

the way God made her hair to be.

To which she jumped in and said,

"yeah, and I trust in God."

All the Best Things Come in Small Packages

So, it's been a week in the new townhouse. And as it turns out... I think we really like it. We might even love it.

As I said in previous posts, it is small. God has provided for what we need, and there isn't an inch left for anything more than that. And there have already been some real neat surprises that we have been blessed with.

Here's a top 10.

10. The kids are learning to clean up more, because if they take out one thing, it's a mess already, so they have to put the first thing away to play with the next.

9. Bella is learning to use the internet and research places to play this summer and things to do, since we don't have a yard here, we're going to play in MN's backyard. So far on the list is Stillwater, Taylors Falls, Duluth, Mankato, Cannon Falls, and many state parks and local playgrounds.

8. The close quarters is beginning to show as the bickering with the girls has begun to increase. However, they are learning to get along, work through their differences, and pick their battles.

7. Cleaning this place is a snap. Outside of the all the boxes and furniture in the garage haunting me, I am actually finding that I have time for things like card games, baking cookies, reading stories, and taking walks. I think there's a word for this - Relaxing? Yeah, I think that's it.

6. Laundry! They have the washer and dryer in the closet right next to our rooms. We have no room for the laundry to pile up, so it gets done. And there's no space to leave baskets that tower with clean clothes to dig through. Things are actually going in the drawers! And as I put things away, I am discovering how much I will save this year on clothes, because now that they are all where they go... turns out they all have plenty of clothes!

5. We all "just fit". And it feels like it fits like a glove.

4. We have a gas fireplace that warms the whole place, the space, and our hearts as we read stories next to it before bed.

3. There's just enough space for the kids to shoot some baskets on our over the door basketball hoop upstairs. I am listening to them all laugh as I write this.

2. The master bath has a tub with jets, everyone loves it. Anthony calls it the "car wash" bath.

1. We are all interacting more!!! The kids are playing more together, Anthony is less isolated, and learning more social skills. The girls and I are having more little talks while I do laundry and they play in the hall with their legos, or horses, or whatever. shaun and I are also spending more time together, having breakfasts, lunches, and evenings holding hands on our little couch. He used to use a seperate bathroom to get ready in the morning, but I have to say, I love that we share one again. It's fun to talk and laugh together before the kids get up. Plus, I can tell him in the morning all those thoughts I used to keep him up with at night.

I know it helps to know that this arrangement is only temporary. It won't be forever. And right now, it's kind of exciting to think about choosing our next home. Location, yard, privacy and size. Our dream is a home in the woods, and now we hope that it's small too. Not this small, but small. Like that country song, "love grows best in small houses".

Boy, does it ever.

Books in the Box

We have MANY Books.

I Love Books.She Loves Books.
So does she.

And they are his Favorite!!

I started packing this week, finally.

I don't have any clue how moms work. I had a little part time cleaning job, I fell behind in things at home, and I had to quit- just so I could pack, move, get re-settled and prepare a "home" for Anthony to recover in. I am so overwhelmed right now.

And I am doubting so much.

Should we even do this?

Maybe we should move somewhere else entirely?

Maybe we should go back to Iowa?

I still feel like my life, and our children's lives, are still there.

Like we left them there, forgetting to pack them.

We started with books last night.

We are seriously downsizing, so I thought maybe it's time to weed out some books.

I think of our couple hundred, I got rid of 12.

But something was so wonderful about it.

Not putting them in a box, but going through them all.

Have you ever taken the time to look at the books you used to read to your kids?

What an amazing trip!

I ran my fingers over the covers and pages of my life.

"Hush Little Baby" - the one I read to Anthony in the hospital when he was born,

and Bella when she had RSV.

"Little Prayers" - Every night to Bella, it was a favorite of hers.

All the sesame street books I grew up loving, and then sharing with little ones on my lap.

Anthony and his "little critter" books he loved, and I loved reading.

There were books from when he was born that helped me through those first hard months.

There were books from the late night with earaches and coughing.

There were books that Anthony and Bella learned to read from,

and some that Emma is learning on.

There were Bella's first chapter books,

and many of the 40 she read to earn her American Girl Doll.

There is even one that was so loved, that when Bella, as a little toddler, got sick one night while it was in her bed, I just cut off the contaminated pages and we kept it.

There is also the series I bought for all of them, that they all just loved, still love, that I bought for them 2 years before any of them came into the picture.

All these books of hope, dreams, real life, and love went into the boxes. And they will go into the new house. Where yet, I am not sure. But THAT part of my life IS coming with.

We've been here almost 2 years, and it's been awful for a lot of it.

But those books reminded me of greater and happier times.

Who knows what will happen next?

I know one thing for sure,

Books and daisies are going to a major part of the decor, even if that's all that will fit.

A New Day

For Valentine's Day, I asked my husband to buy me daisies. I love them, they are my favorite. They remind me of country roads, grandma's house when I was a little girl, blue and white checkered print, summer days, brighter days, simplicity, purity, and love. Yesterday I noticed something else.

D-Danyel
A-Anthony
I-Isabella
S-Shaun
I
E-Emma
S
Ok, so it's necessary that I get more than one for that to work, but I love it.

Today is a new day.
I realize that maybe I wasn't as peppy in my last blog as I was trying to be. I thought the spin on Murphy made it funnier, but maybe not. As I received MANY well wishes, prayers and hopeful stories since then. God bless each of you for all of them.

I think I should have posted earlier though, because I signed a lease yesterday!! Your prayers, along with ours - have come through.

It's going to be cozy, it's little!

But we will fit. It's a townhouse, fairly close, price was decent, won't need a storage garage, this one is huge. So that will help. We couldn't find anything, besides a way overpriced apartment without stairs, but this has minimal. So it should be okay for Anthony.

I am in a bible study right now and on Tuesday we talked about taking the "precious" from our histories, and leaving behind the "worthless". Not that any of our past is worthless, but definitely there are some things not worth passing on to my children.

So in looking into our future - I want to focus on what could be our "precious".

I could get hung up about being in a townhome, being our age and doing college, and renting, and starting over.

Or...
The precious things I could see are that...

-I won't have to mow or shovel for 2 years (and I won't have to worry about Anthony taking off with the mower).

-I won't spend countless hours cleaning my own house.

-I will get to see my children everyday close by my side.

-Nobody will have to change schools.

-We will be cozy, live smaller and simpler.

-We will all have to go out to play as we will have to drive to a park.
This summer could be a "tour de parks" all over Minnesota. And I can go because I won't have to clean my house all day.

-We will meet new neighbors, maybe some close friends?

-We will get to go on summer walks around a great and safe neighborhood.

-My pyromaniac son will be able to flick a switch to start a fire, and flick it again to "put out the fire". No new carpet necessary.

-My daughters will share a room (anybody looking to sell some bunk beds?).

- We can put murals on the walls in the kids rooms.

-We will be able to breathe a little more financially.

-When all is said and done - we have 2 years to get through the backlash of the sale of our home, 2 years for me to get through school, and 2 years where our kids get to see us work very hard to acheive our dreams. There is nothing more honorable as a goal, than to gift my kids with the knowledge and know-how, the example set - of how to create a vision, dream a dream, and then see the fruit of the labor. My kids didn't see what I did or didn't do in my 20's. But when they are in theirs - I pray this experience blesses them.

Because in 2 years, (maybe a little longer), mom will be a teacher and/or a writer, dad will be home in the evenings and on weekends, we will get another house that more suits us, in the woods with a garden. And we will all appreciate it immensely. Until then, we are going to enjoy the next two years (careful to not instill the "I'll be happy when..." philosophy for in two years.) We are going to be happy now.

We are going to plant daisies, in the window.

And be reminded of country roads, grandma's house, blue and white checkers, summer days, brighter days, purity, simplicity, and love.


Precious.

God Called - But I am pretty sure he dialed the wrong number.

You know all those wonderful "comforting" thoughts in hard times. They are supposed to give you a happier perspective, calm you, remind of good days to come.

I need some different ones.

Instead of "thing can't get any worse" - I want to say "things have to get better".
Because everytime things can't get any worse - they do.

So now, after the last few weeks, they HAVE to get better.

Don't say, "God won't give you more than you can handle". Because God doesn't even give it out. Life, satan, karma, whatever you want to call it, is dishing out too much for me.

Murphy, of Murphy's law, isn't just a guest in our home - he moved in, brought his family and are partying in the basement. And I have violent urges to shoot him.

First, we are involved in selling our home and STILL looking for somewhere to live. We hope to close on March 15th, so we need a rental by March 1st. Yes, I am aware how close that is. And I am freaking out, and haven't packed a thing. Murphy's sister, Denial, is always hanging out in my kitchen. She dishes me up ice cream when the house is quiet and I am alone and scared. She even adds chocolate chips on the top. She is making me fat. I hate her.

Second, we got our new insurance. AND IT SUCKS. Our family deductable is so high, we might as well not have any. I will need to keep working just to pay the medical bills. And we will have many. Murphy's brother "Ripyaoff" is taking all our money.

Third, the plan was for me to go to school, get a teaching job, so Shaun could eventually be a 9-5, mon-fri guy. A family. All we wanted was a family life. But with adding school, and the cost, Murphy's cousin, Fear, has me sitting on my computer, frozen, and waiting for something magical to happen.

Fourth and finally - after all this - nothing could have prepared us for the news we got last week. This made losing a job, a house, shitty insurance, and no where to live in 3 weeks nothing to fret over.

I am asking for prayers, lots of them.
Anthony will have surgery in April.
A birth defect was found after extensive testing. How this is just now being figured out is beyond me. Well, I kind of have any idea. Every thing we noticed was just explained away with his "Down syndrome", or his "low muscle tone". Or some other common thought in the DS world. But this one wasn't. His tibia, the shinbone, was twisted and all the "he'll grow out of it's" won't work now. His twisted bone is turning his foot inward, and he is compensating by turning his hip outward. To a degree that he shouldn't be. The "silver lining" I guess, is that they only are doing the tibia and not both the hip and the tibia. For now.
This April they will cut the bone and put in pins and a steel plate. He will be in the hospital for 5-6 days, a wheelchair for the first weeks with one kind of cast, and another kind of cast for the next 3 weeks, but walking. Extensive physical therapy for the next year, close follow-up, x-rays 6 months later, and then next April, another surgery to take our the steel plate and pins, and if all is well with the hip, we should be done. If not, I suppose that will be next.

This little boy, who I never thought would grow out of his rear-facing carseat is now 84 pounds. I think this news was brought to us by Murphy's in-laws - Grief, Terror, Stress, and Devastation.

So life can give you more than you can handle, and that which doesn't kill you only makes you stronger as long - as you don't kill yourself.

God has called me to this life - seriously? I think he got the wrong number.

Iknow, "it will all work out in the end", as long as the end isn't a two-parent, two- income, monday through friday couple who gets time to date, save money for a vacation and enjoy watching their children grow up in a home where you can keep track of their growing years on the wall because it's theirs to write on. Cause, I don't think that one's going to be our end.

A girl can dream, and pray though, can't she?
So keep us in your prayers.

But hey, we'll hit that deductable now.
It can only get better - right?

Still here

Hey there everyone.

To those who have cared enough to check in and are wondering where I am, and why I am not writing, or facebooking, or if I am still kickin'.

Well, it is very late right now, so I will post again soon a more complete update.

But I am still here, going through some very difficult things, but am still here. Thanks so much for asking, and for caring.

As for facebooking - I quit.
One of my new year's resolutions I guess. Working on more face to face friendships instead.
Accomplished the no face book thing, but I suppose from recent inquiries, I am not getting enough face time in.

Will write soon.

God bless.