Things will get better- Living with SMA

Lizzy has had the best summer of her life I think. She has not been far from home but she has been out almost every day enjoying the weather. We had a few hot days the week of my birthday but we still walked at night after it cooled down a bit. I believe in getting out-side as much as possible. Fall/winter will be here soon enough and we will be in our "Winter bubble" again.

Lizzy has been through a lot this year.  Her dad totally disappeared from her life in January this year and only called to harass or threaten Christen. Lizzy has adjusted well. Her anxiety levels have been so much better until she heard she might have to have visitation with her dad. For a week now she has been extremely upset. Lizzy is worried because of her dad's anger issues. We assured her one of us will be there with her but she just doesn't want to see him . I think God will get it all figured out for us as I have been saying huge prayers. I need to write a letter to the court but I am having a hard time focusing this past week. I have a break right now because I have Lizzy doing some school work online so I thought I needed to update. She usually will not do that. Christen has gotten a lawyer so we have Elizabeth's best interests seen to. I just pray that this next court date goes smoothly.

We have an office visit with muscle clinic and DR.Schroth the end of August.

This has been the roughest two years Paul and I  have ever had. Financially, its been impossible.My gosh I believe that we got through it with the grace of God. I can not even tell anyone how bad it truly has been. Like,I told a friend of mine 'They say God does not give you more than you can handle" but truth is that I feel I can not handle the stress of worrying constantly about everybody . I just feel like my brain is going to explode. Not complaining or whining just speaking facts. We will get through this like everything else we have encountered. My faith is strong and I was a very strong person and will be again and Lizzy is doing awesome. She is an amazing child and so glad she is in my life.

Lizzy is doing great physically !! She gaining weight and thriving. her local doctor  DR. Murphy told us that "No one can do the  great job we do with Lizzy. he  said  The care for SMA is still unknown in many parts of the country." We know her and her needs so well!!
Keep us in your prayers !!

Many blessings to all of you!!
"We believe in miracles because we live with one!!"
www.our-sma-angels.com/elizabeth

Help with Lizzy's van fund and medical fund

Direct Link to Christen's Party to order online:  (All orders will be processed simultaneously at 
the close of her party.)
  
http://www.myinitials-inc.com/shop/catalog.aspx?eventId=E91006&from=DIRECTLINK

LEARN MORE ABOUT LIZZY'S STORY AT: www.our-sma-angels.com/elizabeth

PLEASE DO NOT MISS THIS INCREDIBLE OPPORTUNITY TO HELP!!  :)

Shawnna Wendte

Initials, inc. - Independent Creative Partner

Phone - 309.224.9970

 

Tough times and Its Spring finally!- Living with SMA

I need some divine intervention again. Sometimes,I feel I just want to give up and throw the towel in when it comes to difficult times . It seems the difficult times just do not want to leave us. How much can a person take you know? I just can NOT give up ! Its not in my nature to give up.

Paul still has heard nothing about his SSI claim. He can not work. He is not physically able to.

 I am Lizzy's caregiver and I have taken care of her since she was a few weeks old. I feel so bad leaving her if I go getting a job. I guess there is no choice I am going to have to. I do not trust anyone to take care of her. I take care of Paul and Lizzy. Lizzy gives me so much joy watching her grow but then watching Paul  struggle so badly I worry so much about him. He is so cranky these days and he has to nap every day for 2-3 hours. He used to be so good with Lizzy but he has no patience because he is in so much pain these days. I do not get depressed until I start paying the bills and I have nothing left and come up short for one of the bills.  We had a good many years and both of us worked so hard. I just do not understand why we have to be the ones that have endure with the hard times for so long.  

Lizzy needs a handicapped van so badly too. There is so much we need but we get by with so little. 

With out the love from friends we would not have been able to get as far as we have.

Enough , dwelling on the negative!! 

Lizzy is doing awesome. Her Mom and Dad went through a terrible break-up recently but Lizzy has done really well. She is beautiful and happy. She seems to have adjusted well  Kids are amazing on how they bounce back so quickly. She is busy "Bossing " us or giving her two cents on situations!! She does not miss a thing. Love watching her grow into the person she is. What a year but,  we made it through March for the first time in two years with being in Madison!! We can breathe a "sigh of relief". She also had a great Easter weekend. 

Its finally showing signs of Spring. Flowers are starting to coming up through the dirt, the smell of spring , days are getting longer and it is getting warmer. This is my favorite time of the year. The season or renewal.  Now, my allergies may disagree but, my heart is into this time of year. 

Prayers for my sister Lisa. She just went through a major stomach surgery. It was a brutal surgery but, she is on her way to recovery. She just needs some prayers. 

"We believe in miracles because we live with one!"

www.our-sma-angels.com/elizabeth

Thirty-five years of marriage - Living with SMA

This is a us at our 25th Anniversary party. 
Today is my husband and mine 35th  wedding anniversary. Thirty five years is a long time with one man. We have been through so much together and not so long ago things were looking pretty good for our future at the time of this picture and up until 2003. Then, there was a turning point. I quit my jobs because of an injury to my back . I had worked two jobs. Lizzy was born two weeks before my injury. Then, I did not go back to work because I needed to take care of Lizzy and fight for her.  I will never ever regret my decison. 
Then, Paul was losing his job last year and was laid off most of the month of December and the plant closed down and was sold and he was laid off for good March 5, 2009. He was not hired back because of his union involvement even though his work record was exceptional. The place is getting ready to close here soon we hear again. A Spanish company bought it and they treat employees badly , cut the pay, busted the union etc. We have enough headaches now so maybe it was  good thing he did not get hired back. I just wish he could of found a job soon after his layoff.

Thirty five years ago we had no kids..... we did everything together. Paul was the love of my life. He still is but we get along now like my grandparents did.
I was sixteen years old and married. I remember imagining our lives when we were in our fifties. We are there.  We swore we would be together forever. He rescued me. It does not seem that long ago. Where did all the time go?  Now , he hides out in his shop and I take care of Lizzy and the  house-hold . His health is not so good  these days. I worry about him so much too. Where do we go from here?

Tonight,  I made ribs and my own homemade BBQ sauce for dinner. We can not afford to go out and eat. I am sitting on the home pc and he is on his playing one of Elizabeth's  games right now
 Did I think it would end up this way? Never in a 100 years. If someone told me my life would be like this I would not of believed it.
 I used to be  very arrogant not that long ago . I was very good at everything  I did and that helped me in my jobs.  I did not like that person I was.. but I was secure.  Now, Fat and broke..... Those words hit my heart like a ton of bricks.  I was a "go getter" from the time I young. I also did "beyond the dot thing" "Over achiever at work"  I was called all of the above from my employers.  Now, I worry about if we will have the money to pay the house payment or the electric bills. Does not seem fair does it? I guess they say we make our own destiny. I do not know how I made mine but I  guess I did. I have been crying all day and can not hardly think straight. I did not wake up all upset today. I was in a good mood. I was up early  I asked Paul a question  this morning and he tells me "He is 20 bucks short on the house payment" .  I lost it right there and then. He did not expect this out of me. I figured things out like I always do and we are okay but I did not know things were really this bad. I knew it has been rough but not this bad.  He used to stash money(saved for emergencies) all the time and the" Stash is GONE" and has been for awhile. Taking a deep breath  I know we will get through this.  I know we will.We always do. I know this because I have faith. Faith has gotten me through so much these last 6 years. We believe in miracles because.......
I got to get it together to make it all work.  I have to be there for Elizabeth to make sure she gets what she needs. I have to be there for my family.

Paul is going to trade school here soon and things will be good hopefully in few short months. Lizzy is doing great. We have our home. We have family. I have better friends than I have ever had. That is all that counts.
So, I guess I took the day off to feel sorry for myself and I had no reason to. Wow, what a day wasted.
Thanks for listening.

"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth

First Snow - Living with Spinal Muscular Atrophy

Its snowing and Elizabeth is just so tickled. She wants to go out side and sled and it just started snowing!! See the blur above that was Pepper pulling Lizzy last year and she wants to do it again!! I have gotten a new camera since this!! My brother and his kind heart got me a new one for Christmas last year.

Lizzy is totally over her last illness and while it did cause her to become much tighter in her joints but with the help of Linda her Myofascial Release Therapist and me working on her she is not so tight. Her back today is straighter also. Thank Goodness. I was worried. She has been pivoting to the one side really bad since her illness while in her power chair. I did stretching every day while she was sick as usual but this time I really noticed how tight she had gotten every where. I need to also get a hold of Tony at Plattners because her TLSO has not fit her right since she has gotten it and she NEEDS new AFOs.

Elizabeth started on some breast milk from a new donor and doing awesome on it. Its very exciting for Lizzy to get newborn donor breast milk.  The new born breast milk contains in the first few days contains colostrum and builds immunities. This stuff is great for Lizzy  Christen met the mom on WED that is donating to Elizabeth.  Another awesome lady!! A former breast milk donor of Elizabeth's set this up for her. We are so excited to have this milk for the winter. She is going to pump for Lizzy as long as she can. We call it "Elizabeth's Miracle blend." made with love.

Elizabeth and I have talked about all sorts of stuff this week. She is so funny and her comment when she doesnt like something or something is not going her way is " nice".   Its too funny.

She is getting all excited about Christmas.

Many prayers for MJ , Jake and Stella as they are not feeling well.
Keep Lizzy in your prayers also!!
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth