Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

Monday, January 31, 2011

The mom and the dad, my living with vision loss

Don't laugh. Here we are in 8/09. I'm holding our new puppy who is cut off from cropping the photo. She is 80 pounds now.

Yes, Tom has a pony tail. Rebelliousness from 3 yrs active and 8 years Reserves Army!

My glasses are shaded on the right side because in 2001 I had a "mini" stroke. (transient ischemic) I lost the vision in my right eye. The clot killed the optic nerve, the eye is actually fine. You need the nerve though to tell your brain what you see!

So now I'm right handed and left eyed. It is a challenge even after all these years! Light causes the bad eye (our eyes are connected) to tell the good eye that it's too bright and then I can't see with the good eye! So it is shaded. The bad eye doesn't see the shaded lense and often when people or kids stare I forget what they are looking at!

My daughter Grace who is a manager at McDonalds has an elderly customer with glasses like mine. When he came in the first few times his wife asked "Aren't you going to ask about his glasses?" Her husband laughed and told her "I'm a pirate!!" Grace smiled and told them "My mother has glasses just like that!"

I once saw opaque shading on a man's glasses, but my eye would think that was too bright too. It sure would be less noticeable though! :o)

My eye Dr commented "surely you must be used to people staring."
NO!! I'm not! LOL!

One time M.A. looked at me (after I lost my vision) and said quite grumpily "Why your glasses like that?" As if to say she wasn't pleased. :o)

Our Susie who was dying of Alzheimer's would jump in her wheel chair with surprise each time she looked at me until she couldn't remember me anymore.

Medical Drs have been quite rude and have said things like "what's up with the glasses?" ........well Doc I thought they were cool......not!

I'm about 20 pounds thinner than the photo now :o) The double chin is gone. ;o) I still have more to lose. Tom has weighed the same since the day I met him when he was 16 and I was 13!! LOL!

Samson has never said a word about my glasses. To him I'm just mom! He doesn't care what I look like! Bless his precious heart! Once my daughter Lysa took her sun glasses and pushed one lense out and wore them that way saying she was me! But she poked the wrong side out! LOL!!

I used to hate looking different. Looking different affected my work. The County, and families looking for a group home for their family member; prefer people to provide care who do not have disabilities. Meetings with work providers for my clients made them wonder "what" else my disability was. If I was capable enough to support my clients. I hated it. I was only 42. Tom was even put off at first by it. Having a visual disability means limitations. I don't drive in winter unless the roads are well salted! I wasn't as independent and I needed him more than before.

Now I see it as a gift. I know what it is like to be judged as "not fully functional". Not as good as someone with vision in both eyes. And viewed as someone who "may" have other unseen disabilities. Now I know how my Molly in her wheel chair felt. My Samson, Joy, M.A., Susie, and more with DS feel when looked at as "disabled". Or my Andy, Sandra and Ian with mental illness feel when judged not "all there". I work hard to prove I'm still me, but it gets frustrating, and yet it hasn't affected my entire life as it has for others.

I look at no one the same way anymore! I love the verse in- 1:Samuel 16:7 (NKJV) where God says to Samuel- "Do not look at his appearance or his physical stature, because I have refused him. For the Lord does not see as man sees; for man looks at the outward appearance, but the Lord looks at the heart."
My vision loss is God's gift of compassion for me! As God told Paul- He will find strength in his weakness. Thank You Lord!

Tuesday, January 25, 2011

My M.A. my best buddy, who happens to have DS

This is my best buddy M.A.
I have worked with her 24 years now. We are the same age! So she likes to tell everyone how old I am!! I made her the sweatshirt she is wearing, it says "Camping Woman".
M.A. used to love going camping with us. Now she struggles to leave the house. Transitioning from house to camping is hard for her.
Six of the years I have worked with her she had her own apartment. I would call and visit her daily to make sure she was o.k. I took her grocery shopping and taught her independent living skills at her apartment. She did very well. The only problem we had were some of her mentally ill neighbors wanting to take advantage of her.
I had taught her Independent living skills before she moved into her own apartment; while she lived in our group home. She loved to learn things and was always eager to please. She was a very hard worker. She often had 2 jobs and sometimes volunteered at the Library. She loves books. Around age 40 she started slowing down. Her health also started causing some problems. Mostly arthritis and leg clots and infections in her legs.
She moved back into our group home when she was 38. She wasn't able to learn new things anymore and was slowing down quickly. It was hard to watch her personality change so much. She developed her own agenda. She lost the ability to tell time. Others may have thought she was being un-cooperative. But she just decided that she had more important things to do. Getting set in her ways. She started sleeping less at night and more in the day. And she started shrinking into a little old lady.
M.A. had a roommate in our group home who was 1 year younger than us. She too had Down Syndrome. She was lower functioning. We adored her. She lived with us for 16 wonderful years before dying from Alzheimer's at 44 years young. Her name was Susie. We miss her every day.
M.A. and Susie started one of the new Alzheimer drugs, but they both became increasingly agitated on it. So we stopped it. Then a few years later after Susie died, M.A. was put on another new Alzheimer drug. This one had an un-known side effect of weight loss!! After realizing she lost 50 pounds- I ran her to the Emergency Room, only to learn it was a side effect of the drug!
So far I would say that this drug has helped alot! After being on it a few years some of her humor has returned!! Before we noticed her becoming very quiet.
We did learn a frightening thing about these medications at a medication training from a Psychiatrist. They warned that taking people off of these Alzheimers meds could kill them within days! So when the pharmacy told us they were changing her med and giving her a generic, I worried. Thank the Lord the generic was re-called after only a few days! I don't dare ask why.
M.A. is a gift from God in my life. I love her more than words can say. She has taught me so much about faith and love and life. Often at 3 or 4 or 5 a.m you can find M.A. sitting on her bed reading her story bible. And she prays for me too! Can you imagine how sweet her prayers must sound to God. She has the beautiful pure faith of a child.
I thank God for her in my life every day!

And a new donation!! Thank You!!

To the Brother or/and Sister in Christ who donated to our adoption fund- Thank You!! So very very much! God Bless you!

YES!!! YES!!! YES!!!!!

The Minister of Justice (MOJ) of our Country gave us the verbal referral for our boys!! Tom will travel soon for his first trip! There are 2 trips, one to meet and accept them and a second trip (after about a 4 month wait) to go back and get them!! YES!!! We have been working on this since May/10. Tom needs to be in Bulgaria March 6th to the 12th!!!!!!!!!!!
Now we need to raise airfare for Tom, around $1,000.00 and $500.00 or so for his stay-hotel etc.
Praising God for His great goodness and mercy!
Thank You Lord!
We are so undeserving.
Thank You for your prayers!!!! (((HUGS)))

Monday, January 24, 2011

My post about Reeces Rainbow

I posted this on my other blog. (God's Gifts in My Life)
Sorry I put a link in twice it won't work????!!!!

Sunday, January 23, 2011

No news yet.........Samson's teen age rebellion

We had hoped and prayed that we'd hear something-anything on Friday about our Dossier being submitted. We didn't. I did hear our worker in Bulgaria was traveling. So "maybe" Monday we will hear something-anything!
Meanwhile, Samson has been in a mood. He was walking past me at dinner on Friday night, there was no room for him to get past me. So he smashed into me!! I pulled him aside and told him "You need to say Excuse Me!" I was then surprised as he threw his arms up in anger. That was very unlike him! Then he stormed off and he didn't speak to me for TWO days!! Because he was mad at me! He never gets mad at anyone!

Since he was avoiding me, his brothers and sisters told him he needed to tell mom he was sorry. But he quickly folded his arms across his chest and mumbled angry words about "mom" to them, refusing. Then I decided to give him a few consequences. No cookies. Still no apology. No pop and pizza at his brothers birthday party. He was not happy, but nope, no apology. His dad told him- "Tell your mom you are sorry". Nope. He was avoiding me and refusing to speak to me!!?? He has never done anything like this before!

Finally this morning two of his sisters semi-pushed him towards me and told him if he wanted cookies, pizza, pop, and TV, he better "Go apologize to Mom." He would walk towards me, and look at me; and just stand there. So after a few pushes closer to me, from his sisters, and after standing there and saying nothing to me; I asked him what he wanted. And he said "Sorry". It was still a little defiant, but he said it. I accepted his apology and he practically ran to go watch football!

And now he acts as though nothing ever happened!

So often we are told that teens with DS don't mature as quickly as kids without DS. But I would have to say after this incident- Samson is just as capable of being moody as his 3 teen age siblings right now. The hormones have physically have changed him. He already has facial hair and has begun maturing into a mans body at 15. His brother who does not have DS and is the same age has not even physically matured as much. Samson is not a late bloomer in that way. So I think it makes sense that yes, his new found defiance is indeed, just like a regular, normal teenager.

Monday, January 17, 2011

Samson the brother everyone wishes they had!

Do you see how Samson is looking at his older sisters Grace and Hope? (Grace is the taller sister) Samson LOVES his family. You can just see it shining in his face!(this photo is when he was 13) He LOVES his sisters!
Samson does not understand that he is getting two new brothers soon, and 3 more after that! He looks at the pictures of the boys but he has no clue! He loves to help his siblings out around the house. Right now only mom needs his help! His younger sibs are pretty independent. The older ones are busy.
We can't wait to see Samson take on his role as big brother to Julius and Paul! He is going to love helping them and showing them around. He will love them without question. They will be accepted by him as his brothers; as if they had been his brothers his entire life! He is a precious example to all of us!
On Monday our Dossier was submitted. Please Pray! that everything looks good and we get our referral!!
God Bless!

Tuesday, January 11, 2011

where oh where oh when? (cry)

Our Dossier was delivered to Bulgaria Dec. 10th. And we have not heard one word. (cry)
I heard that Friday Jan 7th was the 3rd week that the MOJ had not met to give approvals to Dossiers! UGH! So hopefully this Friday?? :o(

Sunday, January 9, 2011

Lookin Good Mr. Archer!

We spent 5 weeks up north last fall. All of September and the first week of October. It was cold! It rained the first 3 weeks. The last 2 weeks were warm, but no nice Indian summer.
Then when we went home the rest of October and early November were so warm and sunny! UGH!! Oh well! Samson loves camping! And we love Samson! He's 15 yrs old now! Where does the time go. He's not my baby any more, he's a fine young man!

Saturday, January 8, 2011

brothers playing tether ball :o)

This is Isaiah(6 yrs) and Samson (15 yrs) playing tether ball up north. Isaiah is a very good sport when Samson wins! This is why in the vids on my other blog, Samson is always calling "Isaiah!" Because he is a fun brother to play with.

Samson's other brothers- 15 yr old brother Gabe and 19 yr old brother Matthew are too rough! And his oldest brother Andy (35 yrs) just ignores Samson, because Andy doesn't like being developmentally delayed, so he refuses to spend time with others who are. Andy craves to be "normal". And Samson never gets to see his brother Ian (age 29).

So that makes Isaiah a "best" brother :o) and a very good friend! Soon they will have 2 of their 5 new little brothers home from Bulgaria. They are very excited for more brothers in a family of lots of girls! No mom didn't ask for lots of girls, it just happened that way!

Monday, January 3, 2011

Two brothers

This is Samson (on his knees) next to his baby brother Isaiah.
Isaiah loves his brothers!