Counting to twenty

...is so much fun if it all spills once you count it! Then you can count it again!

I don't think there is a better teaching tip for TyC than to add some slapstick comedy to the school routine~

Manic Monday: Passing through memories, facing the future.

All the preparation in the world wont make me feel ready. All the emotional outbursts, the "I am going away if you won't do what I want", the echos in the empty room and the boxes and boxes of things to go through and give away cause feelings I need to hide.

Two days before Ty C and I leave.

What can I pack? No, not the new get well gift of floor puzzles. Clothes? Yes, the ones that are cut open in the back so he doesnt have to raise his arms to get into them. Velcroed on the back for easy access to a fresh wound. Not the heavier toys, the lighter ones that he can use to play laying down at first. Some of his favorite books, sure. But they wont distract while we are in pre-op. What can distract him from the anxiety of being in pre-op? Anyone have any ideas?

Three days before we sit in the pre-op room. All the thoughts of "will he walk again?" or "the scars on his back will heal and fade but how about the emotional scars of another surgery?" and the "how much more will the cold weather hurt this time?"...

We are working on the Pepsi grant for the playground. How easy it is to log on and select Butterfly Kisses...how easy to text that number in. It doesn't cost anything but a few moments. Yet all over the internet people are asking, demanding money for many things. Lives at stake, holidays made happier, lost homes found. Using every emotional ploy to get it. I have donated, I have supported yet I see few who have in turn supported this cause that costs them nothing. I asked for recipes, most people did not have time...I ask for a text, most people have no time.

My mother would have carried a message and worked hard to get that playground here. She was a staunch supporter of Ty C. I remember her holding him, teaching him to count. I remember her encouragement to adopt him, hold him close and take care of him. "Don't let him cry" she would say in a pleading voice. I stand in her room, still full of her things, the smell of her fading. Two years is a long time. Voices fade, smells fade. I call out to her and hear an echo of my own voice. But I see her. The photographs do not fade so fast. My own dreams do not fade so fast but linger in my mind.

All of her things, all of my Aunts things and all of the boxes we have to go through. One by one, selecting the few items that hold memories that are too painful to give a way. Offering then, then donating. Passing through memories. Facing the future.

Help? Please?

Cookbook cover...beautiful! Thank you so much!

Lucille at Poppies Blooming did this! She is quite an artist! Thank you for the cover of the cookbook "Recipes for Love"!

Thoughtful Sunday

It was nice waking this morning and finding I had slept a little later. DH, who works so hard so I can stay home with lil man, had scooped him up, dispensed meds and tube fed him. Everyone was all giggles and smiles when I came in.

Last night my sweet boy read to us. Dad was delighted and loved it. It is amazing to see him try to bring the words from his brain to his mouth and say them. I see it. I see the thought process and the effort. I thank Jehovah for creation. How wonderfully we are made!

As I look to next week, knowing we only have three days left, I feel the ice cubes in my tummy. I am walking the tight rope high up in the air. I can't look. I just have to take one step at the time. One minute at the time. Time is rushing by. I wish I could stop time.

I know it is through the loving kindness of God that I have my son. I am going to trust my Heavenly Father to see us through this. I know love, that of my son's and that of my God who gave His only begotten son....Jesus. I am going to walk that rope with trust in my God.

10 days...avoiding people~

therapists, nurses and repairs! oh no!

If I act like I am avoiding people right now, everyone should know why. I mean I have to.

First thing this morning the nurse comes SICK to care for a little boy who isnt quite over pneumonia and has major spine surgery in 10 days. Would you say thats a poor judgement call? Or poor management? I asked her why and she said when she saw the sign on my door she called the agency. They told her to go ahead and see what I said. ????? Go ahead and what? Expose me, expose my household? Gain entry at all costs, virus, head cold what ever, and make sure we get a dose of it and let me deal with her then send her home?
In what way is this in the best interest of my child?

Our therapists have been wonderful about trying to make sure they are not sick or coming when he is sick. They have other medically involved children to care for too. They are so careful...

The repairman, who holds a part for repair waiting for his money, hasnt even come back. He called and said that he had caught a cold and remembered the sign on the front. All I could say was "thank you, thank you, thank you..."

So the nursing service is not allowed until after surgery. Until after we are past the danger point. I really thought that was what they were here for. I mean aren't they here to help us get there in a safe well manner so that the surgery can be a success and he can recover?

Since they cant behave themselves, I and my lil man will hang out here. No problem! We can entertain each other!

21 Things for this morning that have nothing to do with Ds or medical issues!

1. He says his prayers. When dad prays with him, he says AMEN!
2. He makes sure his Kasey and his stuffed animals say their prayers too!
3. My boy loves with all his heart and being!

3. Artie has a lot of fun~and knows how to laugh!

4. He can read and loves it, and he surprises me every day with his choice of books!
5. He loves the piano. He is gentle and I do think he is going to play. Lessons are coming up!
6. He can beat me at memory now...either I am getting to old or he is really good! LOL!
7. He is domesticated...he helps me make the bed. Well he pulls on the cover and brings me the pillows!
8. He loves dogs. We cant wait until he has one.
9. He can play games on the computers.
10. Oh is he good at hiding things, too! Just he knows where they are. He will bring something back if you ask nicely.
11. He knows all the answers to Kasey the Kinderbot but LOVES to answer wrong so Kasey will say "do you think my circuits are crossed?"
12. He greets each day with music.
13. He makes sure all of his toys get fed. Very important to him!
14. He has a collection. He collects things that are surprising. His collection changes.
15. He has secret places to put things. He doesn't like for us to go into his secret places. Its private.
16. He adores water, balls and being outside. He has a passion for trains, trucks, cars and dinosaurs.
17. Red is absolutely his favorite color, At least right now. It used to be purple.
18. He loves the merry-go-round and wishes there was one around here.
19. He loves to stomp in water and mud puddles. Thank you Katirina for the boots. They will be useful when the rain comes in the spring!
20. He loves his 'Thomas the Train' boots!
21. When I dont feel good he comes close and rubs my arm. I feel better then.

Twenty one things about a sweet boy!

Still counting the days. Holding you...

Hold on little boy, hold on and I will hold you through this.

I know it hurts. There is no place you can sit comfortably. Standing begins to hurt quickly now, too. Leaning forward onto a chair seat or in the net swing is where you find a few minutes of relief but that doesn't last long. Soon, little one, soon we will face the hard part.

What can I do to prepare you for this? How can I help you to steel yourself and guard your innocence? When you open those sweet eyes, will you know?

When we go up to the hospital, you will be so scared. You recongnize where you are when we go there now. Every six months is too often for it to fade from your memory.

Hopefully they wont take long and you will sleep...that deep sleep.

This time it will be harder. More invasive. When you wake it will hurt so bad for a long while. I know it will be hard to breathe. I know you will hurt worse than ever. I cant even imagine the deep searing pain of having my spine altered, having my rib cage opened, of having the intense pressure from the rods. I was told it was like getting hit by a semi truck. I know you will hurt with every move. I know you wont understand.

I am thankful you don't know right now.

What do we trade for another year of your life? Another year of your laughter, discovery and delights?

I know your rib cage will ache when you breathe, your back will hurt to lay there, hurt to move and hurt when I hold you. I know it will hurt to turn your head, to cry, to lift your arm. I know...I would give everything to do this for you. I get so angry. Why do you have to go through this time and time again? How many times in your short life have you struggled to breathe? How many surgeries have you suffered? How many more times will they demand this for your life?

Your innocence makes me cry. To think that the woman who carried you carelessly and the man who gave you life walked away without looking back makes me cry. A deep wondering ache. How can it be?

But I have you now, at this moment. I have you in my arms tonight. Sleep peacefully. Rocking you just so, holding you so your back touches nothing. No pressure on your spine. The deep sleep breath so sweet. Mommy is here, mommy will hold you gently. Sleep without fear now.

15 days and counting...Emerging skills and a nice distraction!

A nice distraction today. A new teacher. WOW!

A wonderful sub waiting for full time work with the school said she wanted to make a difference. And today she did. My very bored 4 year old did wonderful under her direction. They worked on Pre K sight words and he is really rockin' those words! And mama learned a thing or two about teaching.
She did very well with him. He did what she asked and she let him blow his horn for a few minutes...then back to work.

I have been trying to teach him those words for a year now and just started back on the not long ago. I didnt think he got any of them. He would just sit and watch me. A one woman show going over and over sight words.
And I tried so many things...working with so many different publications and even just a chalk board but he never said them. Oh I thought he did once or twice but nobody else could understand...and he did mama proud today!

I could hear him verbalizing...speaking...saying things at her prompting. I am so amazed at how much he has progressed in the last two weeks. I can only give the credit to one of two things...its either the myomuchie or the new vitamins.






The myomuchie is a mouth peice that a doctor developed for children who grind their teeth, tongue thrust and have sensory issues...did he know my son? Its an interesting therory that seems to be working. Ty C uses it for 30 minutes twice a day. What drives a mama to buy something like that? It was not cheap.

Now at first he hated it...boy was he mad. Now he asks for it. He chews on it and plays with it and uses it proprerly...
And he is speaking much more. Tonight he said "tadpole please"...wow!

16 days and counting...Cabin Fever!

Here we are two weeks away from surgery. Hanging out in the sunshine...

Not supposed to go out among people cause so many are sick with viruses and colds.

We have cabin fever...not enough movies, school work or games to make up for adventure. I need adventure ideas for a four year old...

Picture Day! Wonderful Wednesday

A picture before getting dressed for pictures! LOL!

Elmo is knocking on the door of the house that Ty built!

Today we are getting pictures done. Its good to have them done right before surgery. He will be five and time is flying by. After surgery we will retreat into our little healing nest and take our time recovering.

Its funny, you can never ever imagine your baby being five...and then here it is.

Now I am trying to imagine him at ten. It will be here before I know it.

Recipes

I really need some bread recipes for this cookbook! Anyone make breads?

How about an appetizer?

Consider contributing a recipe for the fundraiser cookbook! Please!

Monday again?

Time is flying by. The yard sale was great. LOL I did wind up with more stuff than I started with but we will be doing it again it seems.

I am still working on the cookbook so anyone who has recipes they will share please do so!

Surgery is 24 days away. It seems like it will never come but it will be here before we are ready. I do better when I dont think about it. Today its on my mind because I had to put signs out on the front and back of the house...no entry for anyone with symptoms of cold or virus...and I put out the hand sanitizer and face masks for visitors.

Artie is having a quite a day. The dentist visit brought good news. No cavities, teeth in good shape except where he grinds. A myomuchie to help with that.

Today he will nap in the playroom on the window seat. That way I can watch and work on the cookbook.

Three weeks...its like ice cubes in my tummy...

A good trade...

I know, I am supposed to be raising money for the therapies and for Artie to get a special needs stroller.

But I saw it sitting there. I know I keep looking at other peoples donations and now this. And its not even a donation. :(

Someone wanted to join in the yard sale and pay part of the expenses. Not donate their items, but split expenses. Thats like money in my fund right? This whole yard sale thing cost me about 35.00 so if they give 17.50 back...

Well, then they unloaded a bunch of stuff.

I saw a nearly new wheel chair sitting there. Not one for a child mind you, and adult wheel chair. Unscuffed, unused and just sitting there. I thought back about some conversations I had over heard recently. There is a someone in our congregation that needed a wheel chair at one time. Another in a nearby congregation needed to borrow a wheel chair from someone else. It has come up to many times in conversation for me to pass this up.

As I was wondering how much they were going to mark it for. I wondered if I should buy it. I mean, it was a new wheel chair in a yard sale.
Suddenly they turned around and asked me how to price something.
I used an item I had as an example. Retail price, take 75% off and if its really used, take it down further.

Seems they suddenly wanted what I used as an example for pricing. They wanted it!

Hummm....when is it direction from God? I felt this was.

I smiled brightly and said "hey, I will trade you this for the wheel chair!" The deal was done after they explained in detail how much a wheelchair costs.
I asked "how much did it cost you?" and their reply was "nothing". I figured that.

Ok. This is not raising money for the therapy. But it will help someone. Someone who needs a wheel chair. That justifies losing 25.00 for donation to the therapy fund. After all, I am in this to help others, not just myself.
It was a good evening. I think I accomplished something. I feel good about it.
I am going to let Artie give it as a gift. Its going to fulfill a need. Isnt that what I am doing?

Yard sale~yeah right!

This is an experiment.

Friends have brought over lots of good junk to sell and I have quite a bit myself...and to be honest, I need to stay out of their junk.
I mean its here to sell to help start the funding for the cookbook, right? But they have such good junk!

I spent two peaceful hours going through a big box of leggos, thank you Debbie. Building things and sorting the mixed sets so "they will sell better". More time was spent(wasted) admiring old purses and some intersting coffee pots that use "pods". Oh my, and the bird cage. Did I say I wanted a bird cage? There is one out there! NO, Ann, NO!

Artie has spent the last two days recovering his forgotten toys. And finding his clothes he out grew and bringing them back to the house. He has also found some interesting things in the good junk. When he goes to bed at night, I return them to the yard sale.

My husband is helping, too. He is busy shoving my stuff from the attic out here. Did you get the "my stuff" in that last sentence? LOL...
Ok I did take his cowboy hat and boots and put out there. He wanted them back. I sold them to him for twenty dollars. Out of his allowance this month.
I guess he didnt think that was fair.

I only know one thing about tomorrow. Well several things, but it boils down to one thing. Its the coldest days of the season so far. The Big Pig Jig is this weekend. It has been raining. My helper canceled due to a personal emergency.
And if this yard sale is successful it will be because of Jehovah's blessings, not anything I do.

For those of you who are not from here and are laughing right now because you find the Big Pig Jig funny I just want you to know it seems to be as popular as the fair...something to be said about a BBQ cookoff and a big to-do about it. I have to take the Big Pig Jig as a serious threat. Ahhh the south...yard sales and the Big Pig Jig.

November...the countdown is on!

Surgery is coming up fast. In my mind I panic and look for the nearest exit.

Remaining calm and keeping up with our schedule is the best thing for lil man. Remember that self. Ok.

We went to the doctors office so confident, so sure. We went with the idea of pointing to the protruding screws that are so close to the skin and poke out so much it hurts him to lean back on anything hard. We were going to say "ok we need that fixed" and "why are the screws failing and backing out" and other questions. Questions like "when can he go to school or join in with groups of children to play?" and "when can I trust and let go and be sure he wont get hurt and not walk again?".
Scoliosis and Kyphosis. Lots of pressure in his back. OK...
This surgery will not fix the protrusions on his back. It may infact add two more screws that will stick out. The good doctor says he is ordering two peices of equipment to have on hand so that once he opens he can make the final decisions. Two. Two rods on that tray. Deep breath...hold on. Ok. Its the "lesser of two evils." as the good doctor explains.
That is ever present on my mind. Now here is what else is going on...

Well this Friday and Saturday are the yard sale days. LOL...I picked the two coldest days so far. Maybe it will work. No,thats the wrong view...If it has God's blessings it will work. So I will keep praying.
Recipes for Love
In the state of Georgia many children are in need of ABA therapy. It’s not covered by insurance so many children are either not receiving it or making do with reduced care.
“Recipes for Love” is one mom’s solution to the problem. In an effort to obtain therapy for her child and as many others as she can, this cookbook was born.
Recipes for Love is a collection of precious family recipes from those who want to reach out and help.
A longtime friend once said "nothing beats a failure but a try" so....
Can you share a recipe? That secret one? Share one in memory of someone? The name of the cookbook is "Recipes of Love".
Please send to clohen2410@yahoo.com

The yard sale buys the supplies to print the books. The book is based on the recipes provided by friends and my family. The proceeds will go to Christians therapy and any left over OR if the revenue keeps coming in I want to set up some kind of something to help provide ABA therapy to other kids...even if it is just paying for one or two sessions to help out.

Ok...back to the pile for the yard sale.

Oh but let me leave you with a visual of why I am doing this!