Happy Thanksgiving - Living with Spinal Muscular Atrophy Type 1

We have so much to be thankful for!! Lizzy and her mom today

I will update soon! 

Lizzy turns 11!!! - Living with Spinal Muscular Atrophy Type 1

Today, Lizzy turned 11 years old!! !! A little bit over 10 1/2 years ago we were told she would not live to be 1 year old let alone 2 years old. I did not believe it and told our family we were going to do what it took to save this precious baby!! Well, I am here to tell you she has defied all odds., She never stops amazing me and her doctors with her strength. She does not let anything stand in her way!! She is a great kid and tells you like it is. She is my inspiration and holds a huge place in my heart.
She has been through an emotional roller coaster the last few years and came through it like a champ. Love you Elizabeth Leeann Huette hope you have a great Birthday!!   

Just a Blink and Time has Past - Living with Spinal Muscular Atrophy

It been awhile since my last update. We have just been so busy!!
Lizzy is doing well. We are great. Enjoying the summer. It took so long for summer to get here we are enjoying it while its around.. Took a few trips so far. One to Kentucky and one to see our friends the Poole's in Madison.
Lizzy was supposed to start summer school last week but... sick kids at school with running noses has kept us home.I believe we have changed our mind about sending her now. Why is it some parents can not keep their kids home when they are sick? Its not fair to kids like Lizzy. Just makes me so angry. Well, all we can do is not send her and keep her safe.  I always kept my kids home when they were sick.  She was so excited to go then. boom..... sick kids at school right off the bat. That is okay she can sleep late every day!! She loves that!! Typical tween!! LOL

Lizzy has been in her power chair almost daily for 6-8 hours. Having the Handicapped accessible van has so  much helped her quality of life so much! Paul and I take her to Wal-mart grocery shopping!! Its great!! Her personality is very honest and speaks her mind!! She still says" She loves her life!!" She has been through so much this past year with her dad signing off his rights and jumping out of her life. She has handled this extremely well and her anxiety level is so much better with him not in our lives. Its amazing to watch her and listen to what she says! She pays attention to EVERYTHING!!
She goes to church almost every Sunday too now!! We have missed a few but,we go as often as we can.

We have had a busy summer so far. We went to Kentucky for my niece Alli's graduation. She graduated with honors and got a full scholarship to Berea. We are so proud of her.
My mom passed  in January and it was so hard on Alli.    It was hard on all of us but, Alli was her "Shining Star".  We felt we needed to be there for my sister and her family. It was a fantastic time!! I was good!! I did not shed but, a few tears!! My sister Mindy well , she cried all week-end!! I understand how she feels.  If I would of not had help after my mother passed from our pastor Rev. Ray I do not think I would make it through each day since my past with out crying. He was a great help to me with some situations that occurred after Mom passed away.
We got to see Roman , Susie and Ali while we were in Kentucky!! They all look so great!!

"Enhance the relationships you who do have and do not dwell on the relationships you can not change."  You can offer forgiveness but, you can not make some one care for you or love you if its not in them to do so. I have learned a lot the past two years. I have lost three important people in my life. Two very important people I lost in less than three month almost put me over the edge. I was so close to just having a mental breakdown and doing a withdraw from society. Lizzy kept me from doing so. She is a very wise smart child. She hated seeing me cry and she would talk to me about all sorts of things do get me from crying it worked. Losing ones mother is so hard but losing two mothers in unbearable in such a short time.With Faith you can get through it. I miss my bother Rory and sister Rita so bad at times it hurts. I think losing our mom brought us closer together as siblings but now..... none of them are here.

My sister Mindy and I get a long better than we ever have. I try to remain positive most of the time. I had to get my soul straighten out. I had to forgive, not dwell on things I could not change and just not get so upset so easy. I am "Good" .
My husband Paul turns 60 on Friday!! OMG..... We have been together 40 years! We started dating when I was 15! Its crazy. Looking in the mirror you do not see how you age until you look at pictures! OMG. Where did the time go?  We blinked and its gone!!! Now, I am old and he is old... We have had some hard times and many good times. We have four beautiful daughters , six grandchildren and one great grandchild. We are GREAT GRANDPARENTS!!

Its been a roller coaster of emotions the past 10 years. I think this has been the most challenging part of our lives and learning how to survive some of the roughest times we have faced.  We flew California for Lizzy several times, had to deal with my husband losing his job of over 30 years, we had to deal with his accident. had to deal with him not being able to work , almost losing our house,  been to many states and meeting some amazing people. We learned who we could always count on and those who just blew us off. We learned what it was like to lose  a few of those dearest to your heart. We had to make decisions we thought we would never have to make. The good thing is we survived and we are better people for it! We learned how not to sweat the small stuff and every day is a new day!! I had to learn to give it all to God.

Father's Day was good but, my Dad did not show up. That part upset me but, it was his choice not to come. He is still overloaded with grief. Just wish he would let me into his life but, circumstances I will not go into what has kept me from much contact with him. Sad..  I had to move on and not let it upset me anymore. Its the choices he has made in his life with the people he choice to make those decisions.
 I hope you all have a great summer!

Paul his a 60th birthday party this coming Saturday. We got a hold of some of his old friends!! Its will be a great celebration!!

Please put Lizzy's BFF Sophia Salus in your prayers. She has been in Madison in the hospital.

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

www.our-sma-angels.com/elizabeth

http://www.aadietinfo.com/

Do Not Let Anyone Steal your JOY - Living with Spinal Muscular Atrophy

Its been awhile since I have posted. Just seems I never have a minute to collect my thoughts these days.
Lizzy has been doing just great until today. Up several times last night with secretions. She says her throat hurts"Sigh" . Got her on Zpack right away. She is laying on the couch at this very minute on her computer playing games.   This time of year scares the bejeepers out of me. Three years ago she got sick with RSV and was life flighted to Madison. Two years ago this time of year she had the HMV virus which was worse than RSV.  So, March and April coming I get a little freaked out....  If this weather would just stay Spring I believe she would be just fine. We did take our first trip shopping last Friday in Lizzy's van to Bloomington to Target and grocery shopping. Lizzy said " It was the best day ever!!" She got to spend some of her money and gift certificate she got for Christmas. She ran all over the stores in her power chair.
She is so funny with the stuff she says. She is so opinionated!! Love it!!

Not a whole lot to tell. It seems because, of a lot going on in my life the last few years I had to drop out of the "SMA World" and just lay low for a few years. I have been trying to get back into it and they are so many new families out there I have had a hard time fitting in. Still contact me if you need some help! I just am not on the SMA boards  much anymore. I am on face book but that is about all I do besides reading my emails.

When people in your family die its so sad. Parents are the hardest.... Dealing with grief from my mother passing in Jan has been so hard. I think of her several times a day.
My stepmother was very hard to lose in October. I was so close to her too.

I just want to add do not let others get you so upset at times they steal your joy. If you can look in the mirror and you know you have done the right thing then that is all that counts. Do not worry about what others say about you. Stay around positive people and have a good heart.

I can not wait for nice weather. I want to get out there and walk with out freezing my hiney off. Lizzy wants to run around outside. Only a few nice days in the past few weeks. I am so tired of the cold weather!! I am freezing today and its 41 degrees here.
Hopefully, this summer we can take Lizzy on a few road trips. She so loves her new van.
Blessings to you all !!

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

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

Blessings Received, Paying it forward and Losing my Mother.

Sorry, I have not updated in awhile. We were all so exited about this past holiday season and Lizzy getting a handicapped van among other things. We thought finally, we had some great things happening in our lives. Then, a complete shock..my mother was hospitalized the day of our last Christmas gathering with my dad on December 29. The hospital said " That they thought she had a stroke." She could barely speak only make noises and was on bipap at the hospital. She said in a very slow almost whisper" I want to live" That was the day the doctors tried to get her to sign DNR papers. She was doing terrible when she was first in the hospital. I called my siblings home.  Seeing what mom's bipap settings were I convinced the lung doc to put her settings on a span of 10. They also added humidification at my request. Off Bipap she was on 10 liters of O2.  Mom was doing much better on the bipap after that. Then, the skin break down started on her face and she hated it. She would get all upset and take the mask off.  She had a full face mask on. My siblings started arriving and we knew deep down her time in this world was limited.  My bother  Rory and his wife flew in from Kuwait. My sister Rita flew in from Florida, my brother Tim came from around Iowa/IL border and my sister Mindy came from Kentucky.  We all were there to see her almost every day her last week. She was our center of attention and it felt good to have that "sibling bonding". I told her stories of her giving our kids their first baths after they were first home from the hospital and things she loved to hear. I put lotion on her face and combed her hair. My sister Rita stayed with her at night.  She loved her grandchildren and her great grandchild. She loved babies. She always cared so much about birthdays and the holidays that she would buy gifts or send cards. She was such a caring person and loved her family. She was so proud of her kids and grand kids.
She passed on Jan. 6 . The day after a bad winter blizzard. She loved the sun and light. She passed  peacefully looking out the window at the sun, Monday Jan. 6 at 8:25 am. My sister Rita was at her side. I had not left home yet because the roads were still being cleared off. There were sun dogs that day and I feel she was telling us she was at peace.

I have not been the same since her passing. Every thing I see reminds me of my mom. I think of her at least once an hour or more. My heart is having a hard time adjusting to her leaving this world. She had a rough last few years in the nursing home. It was hard for her not to live with her family. She was constantly in pain with her bladder. My heart hurts I could not just take her in myself. I had Paul and Lizzy to care for and I just could not take on more responsibility and do a good job for all three. She wanted constant nursing care so that is why she lived at the nursing home. She told us Christmas Eve 2012 she would not be here for the next Christmas. She made it a few days longer.I need to forgive myself and I have not been able to do that.
It was so hard losing my stepmother a few months ago but, losing my mother was unbearable. Again, three of my siblings, our families and I went through a funeral in just a few months. My dad also was having a hard time with my mom passing. The day she died is the day they signed their marriage license 60 years ago.
I just wish I would of been able to do everything she wanted me to do for her.
The last picture above is my mom the last week she was in this world with Reed, Rylee and me. Sad picture but.. feel the love. Ohh.. just breaks my heart to watch her suffer so.

Christmas had been great this year. My girls had helped a family out this year instead of exchanging gifts. In the past years we had people help us out when we had the roughest time in our life so, it was time to pay it forward.
Paul got Lizzy her handicapped van in Indiana. Thank you all that donated to Lizzy's fund. We did not raise a lot money online but what we did raise helped so much towards the purchase. It was a blessing to have so many kind people donate to help Lizzy. Thank you to all that helped.

Lizzy told her lawyers she wanted three things for Christmas this year. One was her dog Wrigley( which she already had since before her birthday) Two was that she got an handicapped van, and three was to have her name changed to Elizabeth LeeAnn Huette. She got all three. Her name was changed Dec.23 2013 and she got her van Dec. 23 2013. Life is good .

Never thought we would of made it through the last three years but, with faith and with being blessed with wonderful people in our lives we made it through!! Thank you to my friends and our family for helping us get through the toughest times in our lives. Thank you for being there for us.

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