Thursday, February 13, 2014

Anticipation for Spring!! -Living with Spinal Muscular Atrophy






Hey, Spring we are desperately waiting your arrival.
Cabin Fever has ran into my plea "I NEED OUT OF HERE!" .  Lizzy and I have been stuck indoors since the first part of January. Well, with one trip to the dentist a few weeks ago. I mean come on just to the dentist. That doesn't count does it?
 Lizzy doing any home schooling with me is at a bare minimum right now. She has had a new teacher coming to the house since January, finally.  After, Lizzy's morning ritual that consists of her bath, stretching , face massage and treatments she is on her Ipad,on her computer or right behind me every second while in her power chair. She cracks me up. She told me the other day" Nina, you and I think a like, a lot. Which is okay but, why is every one else not like us?"  I was a bit shocked at this coming out of a 10 year old. I told her that we think a like mainly because, I explain to you why I think the way I do and you tell me why you think the way you do. We are around each other every day and that could be why. She said "Is that weird?" Trying to keep a straight face...... I said " I do not think its weird..... Its okay to agree with me and sometimes its okay to disagree with me if you have a good reason to." She said." Well, Nina.. you are right a lot of the time about things." Oh my I love that kid!!!  She is doing so well these days. I just love being around her. Lizzy is my inspiration.
The weather would not be so bad if it was not so darn cold and the FLU is EVERYWHERE!!
We go no where till we look up the CDC  on  http://www.cdc.gov/flu/weekly/index.htm#ISTE
No one comes in our house sick either. Its written on our doors with a big red STOP sign . If you ignore the sign and come in sick you are asked to leave. We have been basically illness free except Lizzy having a sinus infection a month ago.
Paul has been such a "Grump" being shut in. The truth of it is he gets out a few times a week and still a grump! I know he doesn't feel but, enough is enough!!  Some how I need to break his cranky cycle!!  Lizzy and I usually do well being in but... Not this year. I think its getting to me so hard is because not going any where I tend to drift into thoughts of losing my mom and my step mother. Nothing could of ever prepared me for the grief I have encountered this past year. My heart is having a hard time healing. I sit and cry almost every day. The two most important woman in my life since childhood are gone. I have been trying not to dwell on my grief but, dealing with "Mr  Crabby Pants" (My loving husband) just adds to my emotional state. He stays in his room a lot, is on the home pc for hours or he just complains constantly when he is down stairs. He is in a lot pof pain Lizzy and I agree " We need just to get away from him for awhile." We try to ignore him when he is like that but, sometimes its impossible...... UGH..... Spring, we need your presence so we can go on walks again! We do not need negativity in our lives!!
I have not done any craft things this year as I usually do during the winter. Just have not been able to get into them. It seems I just do not get a chance to do anything extra these days. Lizzy keeps me quite busy.

Many prayers to the families in the East Coast. Terrible Winter Storm hit many areas with bad power outages.
Borrowed this quote. It is so true.



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