Thursday, December 20, 2012

Beating the Odds ~ Statistics Show

Statistics Show Half , that is 50% will fail, 80% end if you have a Special Needs child, and 75% don't make it if there one has a chronic illness.  Hmmmm ~ What might I be talking about?  I think you know.  It's Marriages, and with all those numbers against us, wow how scary.  It's really pretty scary how many marriages in general will end in divorce and then add on everything that Dan and I are dealing's a miracle we've made it this far.  I came across an email conversation, the other day, that was between Dan and I back in the summer of 2009.  Or what I like to call it ~ the crash of '09.  Our lives were in a tail spin....Danny was fighting for his life, I was just diagnosed with Multiple Sclerosis,  we were building a house, starting our laundry business, and our family was split apart by a 3 month stay in the hospital.  Could there be any more on our plate?  You can say STRESS & frustrations were HIGH in our lives. But here we are still here together and standing stronger.  I reread this email and it just broke my heart as it was very evident that we were not in a good place.  I had Dan read it to.  I told him that I hoped we were in a "better" place then when we wrote that email.  Honestly we weren't in a "good" place years before the crash of '09, but I think that was the closest to the straw breaking the camels back for us, or for me.  I was cooped up in a hospital room day n and day out for 70 days watching our son fight for his life and trying to process my new diagnosis while Dan was trying to keep everything a float at the home front along with taking care of our daughter.  Things were out of my control and all I could do is just sit there.   Our Marriage was/is hard I'm not going to lie.  It's give n take, it's compromise, it's disagreements, it's respect, it's honesty, it's love.....all of which I am grateful to have.  I have to say it's not easy, and sometimes it's down right work, but I'm glad we stuck it out through the good times and the bad.  There were many years, yes years, that I can honestly say we were more roommates or acquaintances, then friends or even husband and wife.  We both processed these "HITS" differently and instead of working together through it I think we did more apart.  For that I am truly saddened.  There is no book or set of guidelines on how to handle/cope when it comes to ALL we have gone through.  I really don't know how we are together, when I look back.  Just look at what Dan got stuck with, LOL, I'm sure definitely not the wife and son that he was hoping for....but he stayed and he still loves us very much.  He stayed when there was many times he could have run for the hills not turning back.  I am amazed at how we came through all of this and we're still standing.  Quite honestly I believe better and stronger then ever, but if you would have asked me before, I really didn't think we were going to make it.   I know we all process traumatic things differently and it's very hard to rationalize everything especially when you are in the thick of it.  It's wonderful to see our relationship turn into something beautiful and special once again.  I love seeing us happy and more together now.  I can't tell you how much easier and less stressful MY life is knowing that he's got my back and that I have him to lean on.  We understand each other once again.  We can laugh with each other again.   I'm sure there are still going to many times where we don't see eye to eye and I'm just going to want to choke him and probably visa versa, but I know that I LOVE him and after all we've been through we will Fight through it standing on top TOGETHER.  
Just like our kids, Dan and I are beating the Odds!

9th Birthday Celebration

There are really no words needed on this post :)  Each and every year I try and host a Birthday party to celebrate another year we get to spend with Danny by having his friends and their families over.  Some years unfortunately (we didn't have a party for 3 of his birthday's) we did have cancel do to illness' but weather has NEVER stopped these families from coming and let me tell you there has been more bad weather during our parties then good.  If my memory is correct 4 out of the 6 parties were being held in a blizzard.  It's an amazing time!!
This years theme was the movie "UP"
Danny's cake that I made ~ I did cheat this year and bought the fondant pieces to put on the cake. 
 Danny and his BFF Griffin.....
 BFF Ryan ~ that smile always MAKES my day :)
 Looky here we have the 3 Stooges
 He's Here He's HERE!!!  Every year we've had a party Santa has come to each and EVERY ONE.  I found out that this year he even missed his granddaughters party to be here with us.  God I LOVE Santa!  I don't know what we'd do if he wasn't here to help us celebrate.
 Santa's Little Helper :)
 Every year I go out and get alil something for Santa to give out at Danny's party

After all the the gifts are handed out Santa sticks around for everyone to get a family picture with him 

 The Whole '12 9th Birthday crew ~
Nicholas, Jeromy, Griffin, Santa, Ryan, Danny, Avrianna, Ila, Raymond, Payton, Emerson, Charlie, Noah, Sarah, Brayden, and Gabriel.  And we know that our ^angels^ up above were here to help celebrate Danny's special day too.
After all the pictures and gifts, we put in the Movie "UP" and fed our faces.  We had a "pot luck" style dinner as I made Hot Beef, shredded Turkey, and Hot Ham then the families made a dish to pass to go with it.
In Lieu of gifts for Danny we chose a special organization to donate items to.  This year we chose "The Princess Kylee Project" .  The program was started by a wonderful mom after her Lil Princess, Kylee, passed away.  The project donated to the local hospitals items to the patient and family member to help them feel alil more comfortable with their stay.  The items range from health n beauty  products, jammies, toys, writing materials, and gift cards.  Feel free to go to the website.

Happy Birthday Lil Man!!  Hope you had an amazing party.

 Thanks again Santa for another wonderful birthday party
 I think he enjoyed his party........Don't you!
Please remember if you interested in participating in Danny's Birthday Card Shower.......please send him a card at 2686 Towerview Dr Neenah, WI  54956 and we are going to open all his cards up on his birthday on Dec 23rd.

**As most of you guys know Danny has overcome and still faces many medical challenges during his short time here. Danny has his 9th Birthday coming up on Dec 23rd. I have people always asking what can I "get" him. He LOVES for us to read to him and when I saw this idea from a FB friend in which they had a card shower for her son, I thought what a wonderful idea. 
I am asking everyone that can to please drop a card, or a piece of paper with a Happy Birthday Message or maybe even have your children color a picture for him.
I ask you to take the time and help me celebrate Danny's B-day by sending a birthday wish through the mail.
Thank You so much in advance for your thoughtfulness, you all are amazing! Feel free to send them whenever before Dec 23rd and I will save them all up for his BIG day
If you know of anyone that would be interested .... please share :)
The More the Merrier! **

Wednesday, December 19, 2012

Emotional Right ~ it's a ride

I've had this blog post started for about 3 weeks now, but I've just been so busy lately I haven't been able to complete it. You know its bad when Dan is starting to give me grief because its not updated yet. LOL

My mind is swimming in a pool of emotions and thoughts.  As always I find they leave easier when I get them out in writing. So you would of thought I would have stepped it up to get it finished.  Even Danny's Rehab Dr recommends to get it all out on paper that way it's there in black n white and I don't have to continue to "think" about. I guess I'm on overload which means I'm overwhelmed and really not sure where to begin or finish in this case.   It's really awful when you can NOT sleep as your mind is just racing in every which direction.  I can be physically and emotionally exhausted but my brain just won't shut off, I find I am yelling and screaming with myself to GO TO BED....Turn it OFF!

I thought I was once again in a MS rut, but through many Dr appts they believe I am having a Fibromyalgia flair up.  I have never had one before and I've never felt this way before.... it's awful.  I was/am excited to start the new avenues of doing Feldenkrais and all the therapies of OT n PT to improve my awareness n balance, but with this being said I'm very disappointed that I hurt THIS bad. Right now I feel as if it's all making me worse and I'm down right frustrated.  I wasn't sure if I hurt because doing it and my body needs to adjust, doing it too much, doing it wrong, shouldn't be doing it,  ~ again this is all new so I will give it time....but was so hoping that my body n mind was going to be as excited as I am.
I'm very saddened, hell I'm angry that I can't even bake Christmas cookies with my family without hurting like crazy.  It's just not fair.....I could see hurting like this if I was lifting weights, running a marathon, something crazy like that....not just doing everyday stuff like walking, or holding onto a basket of clothes, or lifting my arms to brush my hair.
Is this really what I'm going to endure the rest of my life??
Am I going to hurt like this everyday?? Man it's going to be a long one if that's the case.  I'm trying some new meds n things to find some relief, but I really haven't seen to much of an improvement plus that to comes with it's own set of issues. Feeing run down and tired is one thing, but to hurt all day, every day, with every move ~ it just pisses me off.  I'm so upset that I can't be the woman I want to/use to be.  My biggest hurdle to is pace myself but I'm not very good at pacing myself or sitting back on the sidelines.  So this will be a BIG adjustment for me.  I am trying :(  I am going to really enjoy our family trip to Dallas as I hope then I will be able to sit back and relax in the RV and see if my body improves with some much needed down time.
A person can hope!?!
I'm sure the added stress of Danny's upcoming surgeries is not helping either.  We've done many pre-op appts, first was with the Orthopedic surgeon to go over any questions n concerns about the back fusion.  Let me tell you I talked and talked and talked till I was blue in the face with the Dr and also with Palliative Care and the Rehab/Special Needs Dr to make sure I got all of the info I NEEDED to make sure I am making the right decision.  What ever happens good, bad or indifferent I can honestly say YES I believe the fusion is the best route to go for Danny.  BUT it still doesn't make it an easy decision.  Like I told the Dr's I wish it was February and I can look back and say it's over with and I'm glad it's all OVER WITH.  In due time, In due time.  Today's appts were with the Anesthesia team and the NeuroSurgeon that will be doing his Baclofen pump replacement a 3 days after the back fusion.  Unfortunately the two surgeries can not be done together, but believe me I tried my best to push for it.  I am very grateful that I was able to get the Dr's to do a med change and then admit him the nite before surgery for observation as we need to be at the hospital at 6am for this surgery to start at 7:30am.  With those early times I don't think I would be able to get much sleep as we live about 1.5hrs away (if traffic and weather are good) and I need to do all his respiratory treatments before we leave as I'm sure he won't be getting Mr Jiggles any time soon after the back fusion.  He really needs to be "cleaned" out before a surgery of this length and magnitude.  I could go the nite before and stay at the Ronald McDonald house or a Hotel, but then I would need to bring ALL of his machines along with.  I would be doing all the moving myself as Dan is planning on coming later in the AM after Avrianna goes to school.  Which means I would have to leave Danny unattended to get ALL his machines ie: Mr jiggles, vent, cough assist, neb, feeding pump, along with our bags in and then out of the room.  I would do it if I had to but they both are not the best options for us, so them being able to admit him the nite before has made me a VERY happy Momma.  One less thing I have to worry about, lord knows I have enough to worry about.

Two Sunday's ago Dan, myself, and Avrianna started going to a new church.  I have to stay it's very nice and not to mention it's alot closer, YAY!  I've been with our "old" church forever (I was baptized there, got married there, and the kids were baptized there), but there is alot going on there that I'm not impressed with so.....we switched.  I'm not BIG on the church thing as most of you know, but for Avrianna's sake I will go.  I would like her to get educated on religion so she can make her own choices.   I owe that to her, and who knows.....maybe....let's just say I will keep an open mind about it.

Avrianna is now a certified Babysitter.  She took an all day class a few weeks ago at the YMCA and she is very eager to start her "career".  She already got to watch one lil girl and she just loved it.  She's even more excited I started a FB page for her babysitting.  This week we had Avrianna's Christmas concert and she was in a speaking part of the play.  She did fantastic!  Spoke very clear and loud, she wasn't scared on bit.  Looks like she got the beginnings of being in Drama.