Another Day

What a yucky day I had yesterday. Terrible headache and having to take Joey cat to the vet to be put to sleep. I cried all over the vet tech person. I was a mess. They weren't sure what was wrong with him so that kinda freaked me out but none of the other cats are sick so it probably was cancer. Cats get cancer a lot.

So today is a new day and I'm trying to get a grip on things...I think yesterday was like the straw that broke the camel's back...In the past 3 months Sam has been in the hospital 3 times. He's been diagnosed with low blood sugar that caused a seizure. He has a surgery in Miami on the 19th and we think we may take him up to NY for another go at his left eye in Oct/Nov. All that has just really got to me. I haven't cried in months so I've had like a floodgate of tears! Usually I push down tears or I'd be crying all the time. On top of day to day life trying to manage our finances...not seeing my husband much with the church and prison work...sometimes life is a bit too much! I'm not one to get depressed but enough is enough! I'm claiming my right to a little depression:)


so I'm back to being positive today and doing laundry cleaning house, getting ready to go to General Council to see all my friends. General Council is the convention the Assembly of God has every two years. It's neat cause you get to see other ministers you've not seen in years! I am so excited about it! They have Kid's Council going on at the same time and Shad is signed up for everything. Steve will be hanging with his buds from Harvest as they are in the finals for Fine Arts. He also has a PK party to go to and of course Sam will stay with us. This year they do have a Special Needs Kid's Care but it was expensive and I don't know if he'd stay plus if he caught something from someone.... anyhow it will be a good time.

In the past week I've connected via Facebook with some moms whose kid have Peter's/Peter's Plus and I even talked with one mom. We belong to an exclusive club! It's neat to talk to someone going through a similar journey! Peter's is so rare that you feel you alone are on the journey (only about 50 cases world wide...) so it's good to hear from others!

So I'm going to start back blogging more, this summer has been busy!

If I could still I wouldn't take nothing for my journey now!

Six years ago this morning I found out I was expecting Sam! Wow what a journey these past six years have been! I include my pregnancy with Sam because it was so traumatic:) I'm glad that I did not know all that was ahead for me when I took that pregnancy test! I probably would have had a heart attack! But God has been with us through it all!

That morning we were still on our vacation. The week before we had gotten home from Branson Missouri and spent some time at the beach with family. Of course we'd been trying to get pregnant for months. The day before I found out, Jon's coffee made me gag. He was kidding and said that maybe I was pregnant. But that month we'd actually had not been doing the fertility drugs, what with travel, vacation, staying at relatives houses...so I didn't even take him serious...Until I woke up sick on my stomach with achy boobs! So I took the test and it was positive. Jon was out jogging so I ran outside and down the road waving the stick. (which i still have by the way!) Jon knew what it was from a distance. We woke up Steve and told him and he was so mater of fact about it. He said "God is sending me a brother" We quickly told him that it could be a sister and he was like "No way I always pray for a brother!"

Of course within days we were worried about the pregnancy as there was no heartbeat when there should have been one...and on and on...

But like the old gospel hymn "If i could still I wouldn't take nothing for my journey now!'

Sam has been the greatest joy and the greatest heartache of my life. I know that doesn't sound too good but it's true. I have cried more in the past six years than I've ever cried in my life BUT I have felt such a deep love for my baby boy that it has been worth it all. He's the answer to my prayers and I know God sent him to us and he is perfect in every way in our eyes! I'm so glad we have Sam what a journey he has taken us on!!

Overwhelmed!

What a crazy couple of weeks...

Sam was in the hospital Last Monday- Wednesday. He had an ear infection but all his levels got really messed up. Since then he has had projectile POOPING~ not unlike projectile vomiting just with poop~lots of fun. I'm worried that he'll end up back in the hospital with dehydration but he is in good spirits, which is better than his mom! He has been in the hospital every month since May around the 20th, how weird is that? Next month he has to have surgery, I'm just dreading it.

I have a very sick kitty (of my 18 or so) and I'm worried about him but don't have the money to take him to the vet. I could take him but I know I can't afford all the tests that would need to be run. I just feel so bad for him. He's a nice cat. I wormed him yesterday to see if that would help, he seemed to drink a little more broth today but he is bad off. I'm worried that some of the others will get what ever he has...

One of our church members an older man has gotten progressively worse, his organs are shutting down , he had a heart attack, cancer...it just makes me feel so sad for him and his family. My father in law has been in the hospital again and he is in a downward progression also. It's just so sad... Life can be a bit too real sometimes.

I'm just feeling overwhelmed by life today!

Too Busy....

What a busy month! I've not been blogging like I should!

Summer has been filled with so much activity that I find it hard to take the time to blog but I'm still here and plan on getting back to blogging on a regular basis soon. And yes I'm still walking!

Still walking...

Yes I'm still getting up at an ungodly hour to go and walk around the lake four times. This should be 3.6 miles, according to city workers. It seems some mornings like it's 36 miles!!

Then I come home and help Steve mow the church yard. Since we have only 2 push mowers this is a daily job in order to get it all done in one week. If anyone would like to give us a riding mower we'd be so happy!

And you wonder why I've not been posting,,,

By the way I've been killing myself yet gained 1 pound! Oh the joys of being over 40! And I hate when I hear people say " Muscle weighs more than fat" Ok that is just stupid. A pound is a pound! Usually very fat people use that argument!!

Peter's Anomaly and Peter's Plus Anomaly

My son Sam was born with Peter's Anomaly. It is a very rare eye condition. Currently the medical info suggests there are only 50-100 cases worldwide. It's so rare that the NORD National Organization of Rare Diseases lists it but has no info on it...

The most common symptom is a cloudy corneas which makes it impossible for the child to see out of the eyes. The cornea is basically the wind shield of the eye. If you can imagine a dirty windshield, that is basically what a child sees. There are other problems related to the eye- size, pressure etc.

Our son had corneal transplants which he rejected and now has corneal implants which has given him alot more sight. It is hard currently he has to have 32 eye drops a day!

Peter's Plus is the eye condition plus learning delays, short statue and a host of medical problems. We feel Sam has that also. There is not a chromosomal marker yet so it is not confirmed but he has about 75% of the symptoms.

It's very hard to find info about this condition. I plan on setting up a website to try and help other parents. It was a shock when we found out and no one was there for us so I'd like to be there for some other families.

Ok I'm in the exercise mode...3 days walking 3.6 miles each morning and eating low fat. Boy I feel good about it! We usually eat low fat because Jon's family history is filled with folks who have had heart attacks, by-passes etc...so he'd like to stay off the operating table! But in my 40's diet alone is not enough. I stay very busy with the children but that alone is not enough to lose weight. I believe walking daily will do it for me. I have to admit it does make me feel good to be out early and sweating:)Plus I know the benefits to my heart and my body. I want to live a long healthy life so I need to continue on this track!

I worry about getting old, having health problems and dying.I guess we all do to some degree but having Sam makes me worry about his future. He will always need someone to take care of him and I want to be that person! Life is different when you have a child with handicaps. Other people don't understand the terror that can grip your heart when you think about that child not having someone who loves him to watch over him. That is my only real worry about the future. I recently was talking to a friend about this matter and he just didn't get it. (of course this guy doesn't even have kids...) The guy was saying things like "Sam would be fine..." I've had other people tell me things like that but not parents of children with disabilities!!!! We all share that particular burden and concern!

So in looking towards the future, that is my biggest concern...I really hope the rapture takes place before I get old!!!