A long over due update- Living with SMA

August is SMA awareness month. Here is a picture of Lizzy and her friend Kyla.
Lizzy is my hero.
I have not posted in so long and I apologize. I have been so busy these past few years its hard to even find 15 minutes to just sit down and post.

My dad has surgery again tomorrow to remove skin cancer on his arm. Its supposed to be routine but when you are 80 years old nothing is routine. Add him to your prayers please.

Lizzy has been doing great except for her sassy mouth at times. She is the worst when I am doing her last treatment before bed. I do not know where she got the mean streak but, I do not appreciate her attitude and how she thinks she does NOT have to do treatments at night. I make her pray after she does this and ask God to help her not be so mean. Not sure what causes her sweet demure to turn into a smarty pants little stinker at night. It will stop or her mother can do her treatments. She is beautiful and a great kid the rest of the time. I guess "Welcome to preteens"

My family has been cleaning my dad's house out that had 5 generations of stuff in it. We have found a lot of cool stuff, creepy relative pics from the 1800s, dust and a lot of junk. My gosh this has been the most over whelming experience in my life. Its been just 6 of us doing this. I mean this house was packed from the basement to the attic. We cleaned this out without central air in 90 degree weather. It literally kicked my hiney. I lost 12 pounds in a week and I believe it was from all the work I did!  You find out a lot about people when it comes to hard work. The ones who show up and the ones who has better things to do. Sad, but very true. Almost done. I am amazed of the work we have done and how much has been done.

I was upset last night as I watched a child with SMA dying on facebook. It tore my heart out I could not watch it anymore. The sweet little guy earned his wings this morning around 7am. How could a mother record her baby dying? Some people are "social media' Crazy. All I could do was pray for the little guys so he did not have to suffer. Not everyone thinks like me or feels like I do . I fight for my kids and grandkids. They are gifts from God. To watch them just die and do nothing is to me a terrible sin to me.  Fly high sweet boy fly free from your suffering.

Summer is almost over and fall is sneaking up. Where did the time go?
Lizzy's mom is expecting a baby boy in November. Kolton Paul Huette will be his name! Lizzy is excited! He is SMA Free!

Thank you to my friends for keeping up on us and sorry again I have not updated sooner.

"We believe in miracles because, we live with one!"
for info about Lizzy in her earlier years  please read Lizzy's website
www.our-sma-angels.com/elizabeth

"The World Loses a Voice of Compassion, Strength and Love"- Living with Spinal Muscular Atrophy Type 1

My heart is having a hard time dealing with the passing of a fifteen year old sweet child with Spinal Muscular Atrophy that flew to heaven Jan. 13, 2015.
 I actually Hate SMA and all the lives it steals. I deal with it the best I can and keep praying that it doesnt take my Lizzy too soon like it has so many other innocent little ones. We never know when our time is up. God only knows that but.... still does not change how our hearts feel when these loved ones are taked from us so quickly.
Brianna McDanel lost her life fighting the disease that haunts my life every day. She was a strong minded child with a huge compassionate heart. This girl had very strong opinions and beliefs.  She loved helping other children with other diseases by sharing their stories. She would share posts on facebook when a child she knew was sick asking for prayers, or a death in their families and always was thinking about others while being in so much pain from her poor little body. She had been hospitalized several times the past few years and I just think her body was so warn out and could not go on anymore.
We have known her family since Lizzy was 18 mths old and her mom brought Christen and I bags of "stress food" to the hospital in Madsion,WI with a hospital stay for Lizzy. We had become friends and we had visited her family and have done family outings with them and other families. Lizzy bonded with Brianna's mom. Lizzy got her first power chair because, after Lizzy was denied for one we used Brianna's chair in a video Briannas father did for us to prove Lizzy could drive a power chair successfully. It worked.
Dealing with so many deaths to people that were so close to me is the hardest thing I have ever experienced in my life this past few years. One death after another. Mostly it was been family members but this little  lady was from my family too.... Our SMA Family.
Please say some prayers to Brianna's family to help them get through this time and to remember to celebrate her life as she was an inspiration to so many families. She will never be forgotten in our hearts.


Now, on to good thoughts here so I can quit blubbering like a fool thinking about the loss  Brianna's life  and how it will impact so many other lives with her absence here in the physical world.

Lizzy had a great Christmas. Only had one bad illness since fall. She is getting so mature at her thoughts it scares me. She is no longer a child but, a young lady with opinions and feelings. Love her to pieces.
Here are pics of her last week in the snow here. She had a blast. She insisted going out and it was 7 degrees!!
Please say prayers for MJ too !

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

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