My Crazy Blog

I have such great pictures I was going to share tonight but my blog has gone absolutely nutso.....every now and then my blog will not cooperate with pictures.   I had a really good blog ready to honor Sam but it will have to be for another day since I am tired from all the partying and ready to go to bed!

In a nutshell we've had a wonderful day celebrating Sam's 10th birthday:)  He is one happy boy!

I promise pictures tomorrow, hopefully and the whole scope:)

This was my FB post today....

HAPPY BIRTHDAY SAM! Can't believe he is 10 years old. He is the most life changing gift that I've ever been given. God allowed his little life and his little life helped change the future of three other children. If God had not given us Sam, we would have never even thought to adopt Shad, Sarah or Selah. So he has done more in his 10 years than most people have done in a lifetime. Every life... is precious, some people may see Sam as just a disabled blind child, maybe even a drain on society....BUT that is not how God sees his little precious life & that's not how we see him. He is a gift that is more precious to me than anything else. He changed my life, for so much better than it was before him:) It was scary handing over the "normal" dreams that we had for our son but God helped us not to be bitter but to look forward and that changed everything. Happy birthday Sam!

 

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Ok for the last two days if "seems" like Selah is bringing her hands together and resting them on her tummy.   This is something she has never done and now 2 of her nurses have seen her do this.  We really don't know what to think.  No one has "positioned' her but we are wondering if her hands just "accidently" came together or is this a real thing she is doing?   If so, this is big.  We will have to see if this continues.  There is this whole thing about "the midline" and kids doing things like this as a development stage.  Please pray that it is something she is doing and that she will continue doing it!!!!

 

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Sarah is doing great with her new walker!  Her PT can tell the difference already with the new walker as we are using it everytime she goes out.  She is loving her new walker and is ready to get in it and GO! 

Ten years ago......

Ten years ago...I was having steroid shots in preparation for the very premature birth of my Sam, not knowing what the next day would bring. We didn't know if he'd survive his birth (planned c-section due to no ammonic fluid & little growth on his part) as I hoped & prayed that day that we wouldn't have to go through another loss....I had NO idea of the adventure I was really about to embark on....so thankful I've gotten the chance to be Sam's mama!!!!

I remember many details of the day before Sam's birth.  I went into my office for really the last time to say goodbye and let people know what was going on, at that time I thought I'd be back to work in a couple of months if all went well.  Then I went to the hospital for the 2nd very painful steroid shot.  They showed me around the NICU....NOT the best thing for me.  I saw babies smaller than anything I'd ever seen before.  The nurses had a little bed already prepared for Sam with his name on it.  That totally freaked me out.  I was so scared & upset after seeing the NICU!   (I don't really like to know about reality until it happens LOL)

Got home to our septic system being pumped out....nice. Back then home was a "huge" compared to now, house in suburbia with 3 bedrooms, 2 baths, a screened in patio, fireplace, walk in closets...  I laugh now, what did Jon, Steve and me need all that room for?  We didn't know how lonely we all were!

Jon took me to the mall to buy some PJ's.  Until the day before I'd been on bedrest for months so this was my only time to shop before his birth.  The day before the doctor had decided that Sam was in more danger in than out so it was time for him to be born.  But they gave me the steroid shots two days in a row to help his lungs mature faster. It really worked and he had little problems compared to some preemies. 

My OB doctor was a nice guy, I was actually friends with his daughter so we had a good relationship.  When he informed me that he thought it best to take Sam by C-section at barely 32 weeks, I was in such shock.  During the pregnancy I hadn't really gained weight, seldom felt Sam move, so I really didn't feel like I was pregnant!  It felt WAY TOO soon to be having a baby.  Well I guess I was in such shock that I didn't say anything to him.  He walked out, then walked back in because he later told me he was afraid I was going to faint!  LOL  He said he had never known me to be speechless:)

That night I held Steve close, I was afraid, I'd never had really had a surgery but when they took the twins and that didn't turn out so good for me.  So I didn't know what to expect.  I also held my little tiny baby bump because I didn't know if that might be our last night together. 

Our doctor really took major precautions based on what had happened to me with the twins.  He told me there would be no dying on his shift.  My doctor passed away a few years ago, suddenly from a horrible form of cancer, I hope he was well taken care of during that time because he showed us a lot of concern and care.  He didn't know why Sam was doing so poorly, barely growing, not moving so he did gently talk to me about things.  We had planned for me to have a tubal ligation since I was already having a C-section but he was honest and told me he just didn't know how things were going to go at delivery so he thought we should hold off on doing that in case Sam didn't survive. 
(Now we know that probably a lot of the problem was that Sam had Peter's Anomaly and it has really affected his growth.)

It was an emotional day, ten years ago.  It seems so long ago yet such a short time.  Sam has been nothing but an adventure since before day 1!  but I wouldn't have him any other way!!!

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We had a good but very busy weekend.  Everyone is well, Selah has seemed really alert the last two days.  Church was great, our highest attendance yet!  Our teens begin practicing for their Fine Art's performance in a percussion band.  It's exciting to see things come together like it has. 

School

This morning we had the final IEP meeting in relation to the three little ones schooling for this year. This 2 plus hour meeting went over all the recommendations and services they will receive.  I agree with the majority of it, just wanted Sarah and Sam to get O&M (orientation and mobility) more time than they get it weekly.  I'm glad to be done with meetings!!!!!  I'm sure the school board personnel are also glad to be done with us!  I do feel we have made better progress this year than any year since I've been dealing with the public school system.

One good idea that was brought up was the possibility of Sam and Sarah going to school next year using a McKay scholarship..  A McKay pays for a child to go to any school, public or private in the state of Florida, as long as the child has an Individual Education Plan (IEP)* or 504 Accommodation Plan.  It's a school choice program.  Our son's school takes Mckay scholarships.  So this idea was floated around today.  After I left the meeting I called our principal and talked to him about it.  We had discussed it after the girls were adopted and before the accident happened so he recalled our conversation.  The funny thing, one of my closest friends who works there had just talked to him about a special needs classroom, just yesterday!  And she and I had NOT discussed this since before the accident!  How funny!

So we had a good talk, I brought in their current IEPs and we are going from there......I'm even hoping that my close friend may end up as their teacher if this all works out!  To be honest, it is a good thing I'm going to a psychiatrist soon.......this is a big change for me to even seriously think about.  Sam has always had such underlying medical issues, that it is hard for me to trust anyone with him but I know I could trust if my friend was their direct teacher.  I've worried for Sarah that a school setting might seem more like an institution to her.  I don't want to freak her out emotionally. 

If this works out, then all the younger children would be in school.  Steve at college and Selah with her nurse....I may actually get some of my work done.  It would take off some of the stress but then replace it with some other type of stress.  LOL  I have ALREADY started worrying thank you very much:)  I bet that Sam has never been without me, Jon or Steve for anymore than maybe 24 hours of his life, I can only think of three times that I've left him with someone besides the three of us!  Sarah has been left twice for a few hours since we've had her.  Those are 2 of the 3 times I've ever left him.....   With a child that is non verbal, it is hard to leave them.  I've never really used many babysitters, even for Steve.

So my life may really be about to change!  We'll see how things go. 

Thanks for all the kind remarks I got regarding yesterday's blog.  I never know how people will take things.  So I never know if the comments/emails will be positive or negative.  Thanks for being positive!

It's a chilly rainy day in Florida.  We got Chinese for a late lunch and I'm ready to go fall out and sleep for a month:)  Steve and Shad went off to see a movie.  It's nice to have someone else driving, but I'm just letting him start to drive the kids without us in the van.  Selah is doing good. 

Hope you all have a good weekend and please remember Selah in your prayers!

HELP!

Do you get overwhelmed by all of the responsibilities of life? I surely do! I feel I'm drowning in all the duties of my life and doing none of them very good. 

I used to be such an organized person.  Even after we had five children, I had everything done, organized and cleaned.   But since the accident, I can not concentrate on things very well.   I was such a focused person but I cannot maintain focus still.  Some days are a bit better than others.  It's not like I'm sitting around all day doing nothing, I keep busy but not focused.  It is so frustrating to me!

Today I made some decisions that I think will help me.  I bought a big notebook to keep track of the "to do list" as well as other things.  That along with the calendar should help me.   Recently I've used about four different notebooks as well as backs of envelopes, that would get lost....so this has to be better. 

 

We keep our house picked up and as clutter free as possible but I don't have time to deep clean very often so I've found someone to clean my house deep once a month.  To me, this is a bit humbling but at this point in life, I have people in and out of my home day & night, there is just not enough time to do this and I can't stand things not clean!

I've asked someone to take over some of the paperwork responsibilities of the church.

And this may shock some of you but I've made an appointment with a psychiatrist.  The appointment has been made for more than a month but it's like a relief to know I have the appointment set.  Some may see this as a cop out but I recognize the stress I'm under and how I'm dealing with it.  The stress of my life is not going to go away.  Sometimes a person can be in a stressful situation for a short time and can deal with it.  I've been in this extreme situation for a year and a half.  There are so very many different facets to our situation that it is just unreal.  Our lives were changed for the better when we had Sam, adopted Shad, and adopted the girls.  But with each thing came more stress and more responsibility .  Then the accident and the ongoing status of Selah is incredibly hard to wrap your mind around.   I've been asked if I am depressed and really I don't think so.  Because I do have a hope beyond this life, I know one day everything will be ok.  I look forward to that future time but I also look forward to things in our lives now.  We have a lot of responsibilities but we are really pretty happy people.  I've been depressed before, like after the death of the twins and that is not how I feel now at all.  I do feel grief sometimes that overwhelms me about Selah.  But overall, I look forward to what life has in store for us.  There are so many things going on GOOD in our lives right now. 

But what I have the hardest thing dealing with is the lack of focus day to day and the anxiety that something else bad will happen to one of us.  I joke around with my close friends, who all tend to have the same sense of humor I have, and say as long as I worry about it....IT will NOT happen.  For example, one of my friends was going back home on a plane and I made sure I worried about it crashing for her so then it wouldn't crash LOL!  You know they say 99% of what you worry about will not happen so I worry so it won't happen?  Make sense to you?  It makes plenty of sense to me:)

But the serious things is I didn't ever worry about my kids falling into the Erie Canal....and it happened.  They went off in the stroller, down the sidewalk on a beautiful day........So now I worry that random things will happen to us.....Ok are you ready to call in the guys with the white suit yet?   I share this in a light hearted way because I know it is absurd but..... I worry.  And I know that that is not normal to worry so much.  Please no scriptures about worrying....I know them.  I'm also NOT going to a Christian counselor for that very reason.  I don't need to be told I'm in sin for being worried for my family.  (not that I think it is a sin to worry, I think it is human nature as we live in a fallen world where bad things happen that we have no control over.)  If the doctor turns out to be a Christian that is great if not that's ok too with me. 

So I'm hoping I will find some help to let me focus better & to let go of some of the anxiety of my life.  If you knew me "in real life" you probably wouldn't think I battle with these things.  I'm being very honest & open on here because there are so many people who struggle in their minds who are ashamed to get help.  People tell me all the time "you make it look easy"  Well it's not easy....

Of course I believe my MAIN help comes from the Maker of Heaven and earth....I wouldn't be in any way able to function without God.  But just as we have doctors for our bodies, there are doctors for our minds too. 

So I'm being extremely open and vulnerable here......but this is my REAL life and it is where I am at.  I want to be healthy physically and mentally to be able to take care of my children for the rest of my life.  I'm hoping to have many years to care and love on my little ones.  The three little ones will always need us to take care of all their needs so I want to be healthy to do so. 

I grew up around mental illness.  Of course as a child you don't recognize it it's "just the way things are"  But both of my aunts had a fear of leaving the house.  One of them had extreme anxiety about everything from her health to everyone's safety., I understand now looking back.  Obviously there were many dysfunctional aspects to my life, having parents who walked out on me as a child and  who lived like teenagers as long as possible..... so I know I do not want to live like that. 

So I hope my honesty will help someone who is reading this to get help if they need it.  I've told a few friends I was going to share about this and they were shocked.

This morning I read this on a friend's wall  "Dear friends, be careful of the preacher who never has a doubt, a bad day, loses a battle, or always is on top of the spiritual world!"  I thought it was a good quote.  So I guess with me you don't have to worry about that with me.....

Sarah's life changed again!

Today Sarah's life changed again......

We'd been using a borrowed walker for her.  We only used it around the house/yard and church.  Since she can't see, we have to hold it and guide her as she walks.  She is a little girl so it means bending over and walking with her.  That is ok in a safe place when I only have to be responsible for Sarah.  But when I have the other children or if I'm in a parking lot, I can not be aware of what all is around me and I certainly can't let go of her walker because she could walk into something or off a curb. I can't stand up completely so I can see all around us nor can I look after Sam while I'm walking like that.   So I asked our Physical Therapist if we could put a handle on the walker.  We brain stormed different ways to do it but nothing seemed to work.  Then she researched for me and found the kind of walker I needed to safely take Sarah out anywhere we go.


It came in today.....and we went out......

Sarah walked from the house to the van, then from the van into the hair salon.  She walked around the outside until it was our turn.  (All 5 of us go so they know us and get us in and out!)  Then she walked back to the van.  Then we went to Walmart for a few things and she walked in and around Walmart some.  On the way back to the parking lot, she did make a crying face so I did carry her to the van (which I'm not supposed to do now with 2 hernias but hey....)  I was able to hold onto Sarah and at one point Sam also.   I felt perfectly safe being able to be upright and look around, especially in the parking lot.  This new walker has changed our lives! 

 

If she looks a little blue around the lips, she had just had a blue lollipop, after her haircut.

 

 

 

we started out in my fav section, the gardening section!

 

 

 

 

 

see my handle! It was so easy to help her steer away from things in her path

Btw if you wonder why she always wears leggings, it's to protect her legs.  She often runs into things and gets lots of little bruises.  Not being able to see, AND being very much a dare devil, makes for some interesting falls.  If she wears leggings she generally doesn't scrape her knees up as much.  Her leggings were dirty today but no scrapes or bruises :)   She is tough and seldom cries but she is so excited to just GO!  So she goes and we rush along beside her as best we can.  She has learned how to avoid hurting herself, for the most part in our home but our house is set up for a blind person.  Nothing hard, no sharp edges.....   We hope she will learn to let the walker be her protection but she still gets too excited and even if she hits something, if we don't' catch her, she'll just ram it again and again.   This is a pre caning (using the white cane) skill that she hasn't learned to master but we all think she will.  Our goal is for her to walk independently in most settings with a white cane. 

 

 

Today alot of people looked at Sarah, more than usual BUT almost all of them with a huge grin on their faces seeing that tiny girl working so hard!!!   I don't think I could love this girl anymore than I do, my heart just bursts to see her doing something like this!  She is just the most amazing child ever!

 

 There is a part of me that feels such a vindication when I see her doing all these things.  This child that was left strapped to a bed, who barely could lift her head up the first day we met her....Now she is walking fast all over the place!  Our Physical therapist has assured us that Sarah will walk independently one day.  Then we can give this walker away:)  But until then she is learning and we are loving it!  I'm so blessed to have this girl for my daughter!  

 

 

Before all this excitement, I got some paperwork done....the scourge of my life!  We went over Steve's books with his advisor and found he is so very close to being finished with high school.  He will probably be done in the next couple of weeks!   YEAH!  Then he can study for his ACT test for college.  Everything is just coming together for him.

 

Selah had a good day.  She's been up all day either in her chair or the stander.  Our PT is out of town this week so the nurses have more time to work with Selah in other ways this week. 

 

Shad is continuing to do well in school and is really pushing ahead in his books.  Since he is already in 5th grade work in all classes, his goal is for him to at least be starting 6th grade work before the end of the school year. 

 

Sam is getting ready for his 10th birthday in just a few days.  We splurged and bought him just one really nice gift.  He is going to be so happy when he gets it.....shhhhhhh it's a surprise. 

 

Our weather is back to Florida winder weather....it was in the 80's today although I think tomorrow it's only going to be in the 70's, winder is so tough here in Florida:)  We may have one more really cold spell for a few days and then we'll be into spring!  I'm ready to work on the garden now.

 

http://www.wctv.tv/news/headlines/Shooting-At-Perry-Ford-Dealership-243701681.html

I got some awful news today.  There was a shooting in my home town.  I know the man who was the shooter, went to high school with him, he was older.  And I know the family of the cop who was such a hero and was shot protecting others.  The names of the other two that were shot have not been released but chances are I'll know them too.   I don't understand how or why someone feels they have to kill another person because of a hurt!  So sorry for all the families involved.  Perry is the last place you'd think something like this would happen.  I knew the family that used to own this dealership, been there, test drove a car there.....rode by it so many times.  You just never think something like this will happen to folks you know!  My prayers are for all involved!

 

 

 

 

 

 

 

 

 

 

 



O Happy Day!

Oh Happy Day!  NO pain today:)   WOOHOO!  Very thankful for the doctor I saw last night and the wonderful shot she gave me:)

You know I've been lucky I've never have had much pain (outside of childbirth and the silly soreness I have had for years on my right side)  If I had constant pain like I had throughout the day yesterday, I would not want to live.  Having that pain made me think of so many others who suffer from serious illness and disease.  As a pastor's wife, we've seen some people who have suffered awful pain  towards the end of their lives.  It always tore me up for them but now just having had one day of searing pain, I will definitely pray harder for others who face pain! 

Today I finally got to meet one of my BFF's for lunch.  We meet each Tuesday that we both can swing it.  Over lunch we discussed eschatology (the study of the end times)   Growing up my church was all into eschatology and wondering when Jesus was coming back and who the Anti-Christ was .....  Do you know that Henry Kissinger's name spells out the Anti Christ?  Just a fun fact learned in a revival service LOL.  for years Kissinger was reported to be the Anti-Christ. In fact I think the old geezer is still alive....  Be afraid....   (BTW I've always said don't worry about who the Anti-Christ is get to know who JESUS is!)  

So back to my lunch conversation.....we were talking about how wonderful it will be when the end of this age comes....  There are so many different view points of how the end times will be.  Some feel Jesus will come to rapture the church prior to the Tribulation period, some think he'll come in the middle and some think he'll come in the end....different verses seem to indicate things a little different.   But we know He is coming back.

You may wonder why the verses seem to have a different timeline, in my opinion, it is because of our lack of understanding.  The bible doesn't have a printed out time frame, we have to look at verses and apply them correctly to understand. 

I'm not sure just when the Rapture of the church will happen.  I'm really hoping that PRE TRIB (pre tribulation) is RIGHT!  That's what our church teaches and boy it beats the alternatives!  But I know He is coming back again. 

I know that one day I'll stand before Him.

I know one day we'll be in heaven together.

My friend had been told as a child that she wouldn't know her family in heaven.  But as she got older she was comforted by the verse that says "we shall know even as we are also known"  That is taken from 1 Corinthians 13:12  For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.

So today just for a few minutes we dreamed about how it will be.....no more sickness or pain, none of our family members sick anymore, no depression,  my little ones will see and walk and talk....  All the former heartaches will be gone away.  No more stain of sin.....  Time to spend with our families and friends...... We said surely there will be a Chick-Fil-A in heaven:)   It's going to be so much more than we can imagine.....but I know it's going to be good:) 

I try to keep my eyes focused on eternity....it's hard at times.  But I've learned that if I look at everything through an eternal lens..it makes sorrow and life easier to bear knowing this is NOT the end......

Oh Happy Day!

Last test!

Last test done today until the thyroid biopsy next month....WHEW!  The Cystoscopy was as bad as I remembered it LOL......(had it once before years ago)  But nothing serious was found!!!!  YEAH!  He did a small procedure in hopes that it will take away the pain I have. If you live in this area, I have to say we have been very pleased with Florida Medical Clinic.  I'm a doctor snob to be quite honest.  I never thought I'd use a doctor not associated with a big hospital BUT FMC is very comparable to Watson Clinic in Lakeland and I honestly like it much better.  They have everything, all the specialists included under their umbrella.  I really like the staff's attitude  they all seem quite positive.  The buildings are beautiful and everything is state of the art.  And right now I'm sitting in their Urgent Care office tonight!  The pain has gotten worse over the hours rather than better and the meds I have are not helping much.  I'll survive but I'm hoping that they can try a different med to help me until I heal up!  (update...they gave me a pain shot and a new med and THANK GOD my pain level is way down.  Still some  pain but this is manageable-  Outside of labor, this was the worst pain Ive ever had.  May have to get a pain shot in the morning too)


I am so relieved that there is nothing seriously wrong with me.  I got all my blood work today and my cholesterol is down from 203 (at physical for the girls' adoption ) to 175....LOL  I used to walk like a crazy lady and exercise.  Now I exercise like once a week and the eating.....well....   We are laughing about this and wondering if we should market my new way to bring down cholesterol!  all my other blood work is perfect, really glad since I've really not been taking care of myself.


So enough about me!  I used to always wonder why old people talked about pain and surgeries etc....  Now I know they wanted sympathy LOL!  

So I thought you'd like to see some photos my friends took this weekend.  What a a great time we all had!  Steve is in the black/grey shirt on the right side of the picture.  they were square dancing:)

 

 

 

 

Later they did smores by the fire and Jon joined them with Sam on his lap.  Shad has his head away from the camera. Sarah and I were inside:)

 

 

 

 

 

Jon and I had really prayed that Steve's circle of friends would grow.  Steve has been so faithful to help us and I think that is an important part of a family BUT we wanted him to make good memories with friends whose families shared similar values.  None of us are exactly the same in all our views but similar.  He had a busy weekend with different new friends and now is starting with the percussion band at our church, getting ready for college days at SEU and another vacation with all of us and our close friends.....fun times:)  I'm just happy for all that is happening for him. 

 

Well thanks for all the well wishes and prayers for all that has been going on with me.  I'm hoping I'll be ok through the night and am thankful for the shot I got, I may have to go back tomorrow for another one but I've certainly got relief and am still somewhat in my right mind:) 

 

I sat with Selah some tonight once I got home and she was just beautiful, very relaxed and she moved her arms around in an independent way.  I love when I see her make normal movements:)   She's so precious, every little thing she does, we treasure.  I'm so glad I got to see her move like that, it's seems her independent movements occur mostly in the early evening.  But they are good "normal" movements, the kind you want to see, not the strange almost seizure type movements we've seen before....  please keep praying for our girl!