31 for 21

Well, it's October again, and that can only mean one thing, no, not fall, not Halloween, DOWN SYNDROME AWARENESS MONTH!!! This month I will, once again, attempt to blog all 31 days in Oct. in honor of all the wonderful people who have Down Syndrome, two of which happen to be my children and one who is my niece.

I will try to post a fact about Down Syndrome (DS), each day. I will label where I get that day's info. Today's facts come from Wikipedia.

"Down syndrome (the most common term in US English), Down's syndrome (standard in the rest of the English-speaking world), trisomy 21, or trisomy G is a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British doctor who described the syndrome in 1866. The disorder was identified as a chromosome 21 trisomy by Jérôme Lejeune in 1959. The condition is characterized by a combination of major and minor differences in structure. Often Down syndrome is associated with some impairment of cognitive ability and physical growth as well as facial appearance. Down syndrome in a baby can be identified with amniocentesis during pregnancy or at birth."

To me, DS is not a deficit, it is a special enhancement that not all get. My children with DS are such a blessing to me, they are fearfully and wonderfully made, perfect in every way.

Psa 139:14 I will praise thee; for I am fearfully [and] wonderfully made: marvellous [are] thy works; and [that] my soul knoweth right well.

Location, Location, Location, Location

I read this on another blog and it really spoke to me, so thought I'd share it with you.

I KNOW...totally no excuse!

No excuse for not blogging, other than vacation for the month of July and laziness and too much stuff going on in August. For now I have something I saw on a friend's blog, I loved it, so Renee said I could "borrow" it:

The Lord's Prayer

"Our Father Who Art In Heaven.

Yes?

Don't interrupt me. I'm praying.

But -- you called ME!

Called you? No, I didn't call you. I'm praying. Our Father who art in Heaven.

There -- you did it again!

Did what?

Called ME. You said, "Our Father who art in Heaven" Well, here I am. What's on your mind?

But I didn't mean anything by it. I was, you know, just saying my prayers for the day. I always say the Lord's Prayer. It makes me feel good, kind of like fulfilling a duty.

Well, all right. Go on.

Okay, Hallowed be Thy name.

Hold it right there. What do you mean by that?

By what?

By "Hallowed be Thy name"?

It means, it means ... good grief, I don't know what it means. How in the world should I know? It's just a part of the prayer. By the way, what does it mean?

It means honored, holy, wonderful.

Hey, that makes sense.. I never thought about what 'hallowed' meant before. Thanks. Thy Kingdom come, Thy will be done, on earth as it is in Heaven.

Do you really mean that?

Sure, why not?

What are you doing about it?

Doing? Why, nothing, I guess. I just think it would be kind of neat if You got control, of everything down here like You have up there. We're kinda in a mess down here you know.

Yes, I know; but, have I got control of you?

Well, I go to church.

That isn't what I asked you. What about your bad temper? You've really got a problem there, you know. And then there's the way you spend your money -- all on yourself. And what about the kind of books you read?

Now hold on just a minute! Stop picking on me! I'm just as good as some of the rest of those People at church!

Excuse ME.. I thought you were praying for my will to be done. If that is to happen, it will have to start with the ones who are praying for it. Like you -- for example.

Oh, all right. I guess I do have some hang-ups. Now that You mention it, I could probably name some others.

So could I.

I haven't thought about it very much until now, but I really would like to cut out some of those things. I would like to, You know, be really free.

Good. Now we're getting somewhere. We'll work together -- You and ME. I'm proud of you.

Look, Lord, if You don't mind, I need to finish up here. This is taking a lot longer than it usually does. Give us this day, our daily bread.

You need to cut out the bread.. You're overweight as it is.

Hey, wait a minute! What is this? Here I was doing my religious duty, and all of a sudden You break in and remind me of all my hang-ups.

Praying is a dangerous thing. You just might get what you ask for. Remember, you called ME -- and here I am. It's too late to stop now. Keep praying. ( pause ... ) Well, go on.

I'm scared to.

Scared? Of what?

I know what You'll say.

Try ME.

Forgive us our sins, as we forgive those who sin against us.

What about Ann?

See? I knew it! I knew You would bring her up! Why, Lord, she's told lies about me, spread stories. She never paid back the money she owes me... I've sworn to get even with her!

But -- your prayer -- What about your prayer?

I didn't -- mean it.

Well, at least you're honest. But, it's quite a load carrying around all that bitterness and resentment isn't it?

Yes, but I'll feel better as soon as I get even with her. Boy, have I got some plans for her. She'll wish she had never been born.

No, you won't feel any better. You'll feel worse. Revenge isn't sweet. You know how unhappy you are -- Well, I can change that.

You can? How?

Forgive Ann. Then, I'll forgive you; And the hate and the sin, will be Ann's problem -- not yours. You will have settled the problem as far as you are concerned.

Oh, You know, You're right. You always are. And more than I want revenge, I want to be right with You . (sigh). All right, all right . I forgive her.There now!

Wonderful! How do you feel?

Hmmmm. Well, not bad. Not bad at all! In fact, I feel pretty great! You know, I don't think I'll go to bed uptight tonight. I haven't been getting much rest, You know.

Yeah, I know. But, you're not through with your prayer, are you? Go on.

Oh, all right. And lead us not into temptation, but deliver us from evil.

Good! Good! I'll do that. Just don't put yourself in a place where you can be tempted.

What do You mean by that?

You know what I mean.

Yeah. I know.Okay.

Go ahead. Finish your prayer.

For Thine is the kingdom, and the power, and the glory forever. Amen.

Do you know what would bring me glory? What would really make me happy?

No, but I'd like to know. I want to please You now.. I've really made a mess of things. I want to truly follow You... I can see now how great that would be. So, tell me . . . How do I make You happy?

YOU just did".

A few random pics

Joey and Anah at the lake a couple weeks ago.

Joey, king of the tree!

Joey doing school work.

Big brother watching the three littles.

My beautiful girl.

Just thought I'd post some pics since I finally found the camera cord.

Stranded

What do you get when you mix a blown head gasket with an oxygen flow sensor malfunction? Two dead cars! UGH! My dh was in the process of trying to get our second car on the road, it's been out of commission for many months, when our head gasket on our "good car" blew. Since that is a bigger job, requiring more time and more money, that is put on the back burner while he tries to get the stationwagon up and running. Of course the part we need for the wagon cost about $200 new, so my dh is off to the junk yard, for the second day in a row, looking for a replacement part. Poor guy has to walk through the junk yard and try to find the right kind of car, then remove the part. He did that yesterday, brought it home and put it in the car, only to find that one didn't work either. I know, that's what you get when you buy "junk" but it only costs $20 instead of $200, so it's not even up for debate. He took the faulty part out and is going back to the junk yard to try again. Please pray that he finds an acceptable replacement and that once it is in the car it fixes the problem, then we just have to get the wheels aligned and get it inspected.

Of course, we are trying to get the car going because, firstly, we obviously need a car, secondly we have missed all our church's evangelical outreaches this past week :o( , and thirdly we are trying to leave for our cottage next week. Every year satan tries to prevent us from going to the cottage and to our 10 day christian retreat. We always have car issues, financial issues and health issues. Since it is God's will for us to go, we always make it, our God is greater than any thing satan can throw at us, we just have to rely on Him.

So today, instead of going to our evangelical out reach, I will spend the day playing outside with the children and just enjoying the peace of home. I believe God is allowing this as a fun time for the children, they went swimming in the lake yesterday, a first for Anah, she had a blast! I thought she might be fearful, HAHA, was I wrong!

Please ignore the chubby ghost, she doesn't like being in pics, especially video's, but she was the one holding on to Anah...lol

I know...I know...

What can I say, I've been in a blogging SUPER funk...ugh. To be honest, I think a lot of it had to do with my friend's baby's death. I battle depression normally, and as much as I try to fight it, sometimes it wins out for a little while. Add in an entire household with a stomach bug, and mine lasting about 10 days with a flare up of my lupus, well, I just didn't feel like blogging.

We've had appointments like mad, seven therapy sessions a week, as well as homeschooling and church life, you get the idea, I'm one tired Mama. I actually went to the doc. this past Mon. (since my dh and ds nagged, I mean encouraged me to go). ;o) I hadn't had any blood work r/t my lupus, thyroid, etc. done in over 3 years...oops! I had that done on Wens. I also have to go see a hand specialist about my goofy thumb that wants to be stuck and hurts all the time, but can't get in until July, which means August, since we're gone all of July.

I'm trying to get things ready to leave for the cottage, but haven't been extremely motivated. Still can't find my camera cable, so still no pics...argh! Bob's been working on the cars, trying to get them both up and running safely so we can take them down to the cottage. He's such a great guy. While I was down and out with the bug, he took care of the kids and the house, as well as made sure I was ok, he's such an angel.

Jonathan went for his re-evaluation at the Children's developmental disabilities center. The doctor hasn't seen him in a year and she was thrilled with his progress! She said she had thought when she first met him that he might be autistic, but now knows that it was just environmental deprivation and is so happy with all his achievements. He saw the PT lady and it was decided he needs orthotics. We made an appt. and he will have them before we leave on vacation. They are called Sure Steps and only go up his ankle a teenie bit for support. He's still not wearing his glasses very much, but the eye doctor didn't expect too much, so I'm not too concerned, we'll just keep on trying.

Anah went to the eye specialist. She doesn't need glasses, but does have some corneal scarring from untreated eye infections. That and her droopy bottom eye lids do not need surgical intervention at this time, thankfully, but she will need an antibiotic/steroid eye drop whenever she starts getting her red eyes. The doc. feels it is d/t her droopy lids, causing tearing, which then crusts up and goes in her eyes, along with bacteria, causing repeated eye infections. I'm to put warm compresses on her eyes daily (he laughed when he said it....so did I) and wash her lashes with tear free baby shampoo. Hopefully, this will decrease the eye infections. She goes to the Children's dev. dis. center the end of July for her first eval. She came with us when we went with Jonathan, and just from that brief interaction, the doc. feels that Anah might be autistic (I had figured that), but maybe time will change that as well, but I don't think so in her case.

Joey is wrapping up his school year, he'd be done if he would focus on his math a bit more, but he'll be through by the time we go to camp. I'd hoped to get him through two years of math this year, so he'd be "caught up", but that didn't work out. That's ok, I'd rather he progress slowly and get it, than to shove through and always struggle, that's the beauty of homeschooling. He's very advanced in his other subjects, it's just math, spelling and handwriting that give him difficulties. He's done all his testing for the year, we did that back in May, he actually enjoys it, crazy kid!

PJ still can't find a job! He's hoping his sister can get him in where she works, we'll see. He starts his summer class next week, so will only be able to come down to camp meeting on weekends. It's been wonderful having him home, I always miss him.

Amanda has one more semester of college to get her associates degree in Human services. She plans on going on, but isn't sure for what. I'm so proud of her, she's my high school drop out, but went back and got her GED and now is making the Dean's list each semester in college! She had many struggles after her father left, but has really pulled herself together. She's still working full time and just got another part time job. She enjoys living on her own, but it is costly.

Michelle is doing well as far as we know. We don't talk to her as much as we'd like, but she's a busy young woman with her own life. She makes sure that her Grandma isn't alone in that big house in Philly. It makes Bob feel better knowing that if Mom needs help, Michelle is just up the stairs.

Today my g/f R. and I went to a friend's husband's memorial service. He was a youngish man, 56, and had battled cancer for over two years. It was a wonderful celebration of his life and his legacy of Christ that he left behind with all who knew him. What a difference in memorial services for those that are believers to those who aren't. While we mourn OUR loss, we can celebrate our loved ones victory over death through the gift of salvation that our Lord and Savior gives to those who believe in Him. What a sense of peace fills those services, compared to the dispair and hopelessness that fills the services of nonbelievers.

I guess that's most of the highlights since I've been MIA. Tomorrow is our ladies breakfast, then we have a double grad. party in the afternoon. Sunday after church we're going to J and R's since my Dad and Mom will be in Canada at a friend's house for their daughter's baby shower and Bob's Dad is deceased. J needs Bob to help him with some work on his truck, so R and I will visit while the kids play. I guess we can cook for the guys while they work on Father's Day ;oD

Long time no post...

It's been about three weeks since I lasted posted. It was right after baby A. died. To say it has been an unimaginable time is an understatement. Personally, I still can't seem to wrap my mind around it. Even though I held her after she died in the hospital and was at her wake and church service, I still can't believe it. It could be because I've never had the experience of a child I know dying. It just seems so wrong somehow.

My poor friend, A., who's baby it was, had her grandfather die the next day, so after burying her baby, she had to go bury her grandfather, out of town. She and her children have been out of town, staying with her parents ever since. Her husband went with them for the funeral, but has had to come back home to work. She should be coming home this weekend, that is when she will really need us (her church family) to come along side her. When things quiet down and she doesn't have the busyness of it all to distract her from the reality of it. Please keep them all in prayer, as well as my friend D., who found her. She continues to struggle.

We went down to our cottage for about 7 days after the funeral. I didn't have any internet access, so that is part of the reason I haven't blogged lately or checked my email. It was really nice to get away from everything, to have no errands, no therapies, no appointments, just to spend time with my hubby and four youngest children. My mother in law and sister in law and brother in law came up as well, they have a cottage too. It is always so nice to be able to spend time with them, they are wonderful people, I'm blessed!

We came back to our usual array of appointments and therapies and will be busy the remainder of the month. But then, July is a full month at the cottage, hooray! Our 10 days of camp meeting are during the time we are down, so it's such a great time for us! This will be Anah's first time at camp meeting. I'm not sure how much she will comprehend, but the love of God will be evident!

Anah is now signing: no, stop, more and brother. She is saying: Mom, Dad, PJ, Jonathan, stop, stop it and no. She is participating more during her therapy time and seems to enjoy the other children more. Her strength is definitely increasing, her endurance, her balance as well as her desire to play. She enjoys being outside playing on the swings or in the sand box. She is trying to ride a bike, can't quite coordinate the pedals yet, and can make herself go on the glider on the swing set. She is drawing more and enjoys talking, interactive, musical toys. She is smiling a lot, makes much better eye contact and enjoys participating in the family.

Jonathan got his glasses today. We got him a pair from Specs4Us, he looks so smart! He kept them on for 45mins. today, but then started to throw them. We are telling him no no and tapping his hand when he throws them, but it will take a while for him to get adjusted to them. He is walking all over; outside, on the lawn, up and down little inclines etc. His balance is so much better and his muscle tone in general has improved. He is making noises "talking" and has added "block" to his signing. He got his stitches out of his head and the wound has healed (after he reopened it a couple times). His therapists continue to be so impressed with his weekly progress, it is always so good to hear.

Next week Jonathan has a follow up audiology appt. (he's failed every hearing test so far), and his repeat evaluation at the Down Syndrome/Developmental Disability center at our hospital. Anah has her CSE meeting at school next week and then her first eye doctor appt. the following week. I don't think she has any visual difficulties, but then again, it's so difficult to tell, so I figured I'd better get it checked out.

This Friday and Saturday I have my "Women of Faith" convention. My best friend and I have gone the past two years and really look forward to it. This year Steven Curtis Chapman will be there, so it should be especially awesome! It's always such a blessing to go away for a couple of days with my friend and get refreshed with a bunch of other christian women. It's a nice break from the usual daily life. We stay overnight in a hotel on Friday and just relax. It's so nice so we don't have to drive back and forth 45mins. each way and we can keep in the "groove" for the two days. We are blessed to have two such wonderful husbands who encourage us to do this each year and take care of everything on the home front for the weekend, so that we don't have to worry while we are gone. It is a gift that they give us each year, very sweet of them.

I still don't know what I did with my camera cord, but once I find it, I'll post some pictures.