Making Lemonade- Living with Spinal Muscular Atrophy

What is the phrase people say" When life gives you lemons...... oh yeah,.... make lemonade?" Well, things here have been plenty lemony lately and at times seems it will not get any better. I am so very tired. I don't sleep well. I have being trying so hard to keep positive energy flowing here but dealing with some of the issues going on in our lives its getting harder to keep those positive energies flowing. One negative person can suck all that positive energy right out of you.

Lizzy is doing great so its not her.She helps me through times like this. Her and my family.We are a close family. My girls all have good hearts and are so caring.

Seems like dealing with stress as been a part of my life a lot these last few months. My mother's hospital stays and the fact that my husband has not been able to get a job. Today his unemployment was cut off with out notice. He was informed he had gotten another extension( a month ago)  11 weeks and today he received the statement where he did not get paid benefits. He has applied all over every week since he has been out of tech school.  He has great phone interviews but they do not call back is just his age? His resume is very good.  Makes no sense why he can not get hired. We have kept all our household bills paid since he was laid off some way or another. Lizzy and her mom lives here too with NO HELP from Lizzy's Dad for anything for a very very long time. We have learned to adjust and only buy what we have to have.  Now it will be even harder to survive. Now what?  

Paul and I made for last years income the same amount I made when I worked full time the last full year I worked over 8 years ago . I was in shock when I looked at our tax info. How scary is that? Thinking back about ten years ago we thought would have a nice nest egg by the time we hit retirement age.My retirement money has been gone for things we had to do when our life changed and when I had to quit my job. There is nothing I or my husband would not do for Lizzy.

Lizzy's new doctor that we had 2 hour consultation with months ago (after our doctor of many years left) was terminated last Friday. There are NO doctors here that believe in NIV protocol and that will help us get what we need at a local level. That was like a kick in the gut. I contacted our old doctor that left and he gave me a few options but....... Lizzy has NO local doctor until March here and that is a maybe. He said" I do not need to worry because I have myself and that doctor in Madison ( he told a friend of mine that)". LOL  Hopefully, the doctor he recommended to us here will take Lizzy on as a patient. We need one locally for scripts,blood work and check ups.

Lizzy's suction machine no longer holds a charge and we can not get her a new one. We were cut some of her supplies AGAIN from Medical supply company. Lizzy was finally approved for her new seating for her power chair over a month ago and they are still waiting on some parts to get here .She is being serial casted again because she needs new AFOS after the last time because she pushed herself out of her old ones.

Our gas bill alone for last month was over 600.00!! I am calling Monday and trying to find out why it was so much considering we have Just energy and at a locked in price for gas for two years now. Never ever in our lifetime has it ever been that high. There are other bills I am stressing about also. 

We will get through this as we have before. Divine Intervention always seems to help me think more clearly and figure things out. That is what has gotten me through so much these last 7 years. 

Some of our friends have helped us out more than they will ever know in our really rough times. 

I had a friend that really used to be close to us call me late last week( out of the blue ) and was so negative about doing anything to help these kids . She herself is a parent of a child with SMA but with a different type than Lizzy. As, much as I tried to bring her more positive the harder she tried to be more negative. I realized I was getting no where in trying to help change her thoughts that night and told her I had to hang up before she sucked me up in her black hole of negativity. I laid awake most of that night just trying to figure out what has done this to her. How can these kids do well in these deep dark holes that these parents have created for them. How can they understand what blessing and miracles they are with such a negative home environment?

Lizzy still says " She loves herself!" and I do not want anyone ever to change her thinking. Do we believe there is a cure coming?  I believe God gave us what we need to heal others and we  just have to find them. I believe that being honest and living a good positive life( positive energy) helps us find the things we need to heal others and ourselves. Healing starts at home. Living life for each day and celebrating life is what its all about. Even in my thoughts and trying to figure out how we can get through this I try to stay so positive. It gets  harder and harder but we will make it. Then, maybe soon we will breathe a sigh of relief if Paul gets a job.

Lizzy is growing and still makes us laugh at her sense of humor. She is like adult sometimes  in some of the things she says. Every night I hold her in my arms before bed kiss her head and we say our prayers. Its a special time just her and I share. 

So, my advice this time is keeping positive makes your special needs children thrive. Just love them for who they are and let them know they are truly miracles. 

No matter how hard things seems someone else some where is having a harder time. 

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

www.our-sma-angels.com/elizabeth