Sunday, September 18, 2011

Where does time go and remembering - Living with Spinal Muscular Atrophy


9-12-2011

Good grief its almost the middle of September. Where has the time gone?
I think this summer was the hottest more stressful summer I ever been through... EVER!!  Now, its early fall and things have calmed down a bit but the summer has escaped from us very quickly. Lizzy was not out side a whole lot because it was so darn hot. My kitchen air conditioner died. Not, a good thing in this hot weather . I welcomed a few cool days but, unfortunately its back up to the high 80s here.When its hot I have a hard time too!!
My sister Rita  was home for the first time in 5 years. It was so very great to see her ! I got to share some of my stress with her.  She looks great. Me..... I have gained so much weight its pathetic. I have no time to exercise but  I have been thinking while Lizzy's teacher is here I might start a exercise routine  when she comes twice a week. I need  SELF DISCIPLINE!! Lizzy has a routine and  I do now NEED one too,  for me!! I have a bad habit of not sleeping and eating very late. Bad......... Wish things were better because I would join weight watchers in a heart beat if I could. I would feel so much better if I could  lose 20 pounds. I need to badly. Maybe soon I hope.
Lizzy has her first sinus infection of the season. She is doing very well today. I hate it when she is sick. Keep her in your prayers.
 Paul is healing well and in therapy. Mom is doing much better and her health is improving. They found a mass in her pancreas which we are waiting the results . I am hoping she is okay. She is FINALLY being medicated for her mental issues. Its going to be great to make she sure she is doing well. Maybe some peace now for all of us!! Love it when good things happening!!

My thoughts were pulled back to 9-11-01 yesterday and basically all week-end. I felt  the pain in my heart 10 years ago. I  felt at the time I  had  been personally violated and I know so many felt just like me even though I knew no one that had lost their lives that terrible day. How could one man of caused so much murder and suffering?The biggest mass murder in US history. I felt all those feelings all over but then I also felt some feeling of hope after seeing the memorial site of that tragic day . I felt a peace and a calming when seeing it on TV on Sunday.It felt like a healing to my heart.


Lizzy will be 8 years old on September 29th.. Can you believe it? My goodness. She is such a beautiful ,interesting, fun , intelligent,courageous, charismatic, sociable,talkative, sweet child. I love her so much and for being in my life. She has taught me many of life's lessons. She taught me to live each day . She has picked a tea party birthday theme. She had a tea party at the hospital a few times in Madison when she was there in April and is so much into that kind of thing.. She wants her friends to join her in her birthday tea party. We were suppose to go to Minnesota with our dear friends for Lizzy's birthday but because of health issues of my mother and my dear friend's mother it was a mutual decision to hold off until spring or next summer. It upset Lizzy not to go but she is old enough to understand. why this was not a good time. So, Christen has taken it upon herself to make up for not going to see our friends in Minnesota by having a huge party for her with all Lizzy's girl friends dressed up in their finest attire for her" tea party birthday."

So, much has been going on this summer. Never a dull moment. Last week we had a bad storm and lost internet access for 5 days and Elizabeth was so upset!! Thank goodness it was only the modem to our internet and easily replaced. too bad it was 5 days after I figured out was wrong for the phone company to come by double check what was wrong.
You know we have gotten through these bad times and we are stronger for it. Prayers and good friends have help us get through this. That is why we believe in miracles. Thank you again to my friends for helping us through this tough time in our lives!!
My quote for this past summer and all the out of the norm things that happened.
"All the waters in the ocean could never sink a ship unless its get inside, likewise all the pressure of life can never hurt you, unless you let it in."


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

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