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?