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!"

Just Believing- Living with Spinal Muscular Atrophy

Its been a fast fall with winter approaching quickly. So, many changes happening. Lizzy is growing up so fast I feel like life is spinning ahead at full throttle. The past 10 years has been one of the most life challenging as any years before. Paul and I went from being totally financially secure and working hard until my injury. Then,loving a grandchild so much we stopped life to help give her the best life we could. Then, Paul being with out a job. He could not get work because of his age. Then, his accident making him disabled for life.We lived on so little. We had a few friends that helped us when it got so bad we did not know how we how going to make it through.  I can not believe we have made it the past three years (which was the hardest ever in our almost 39 years of marraiage). Patience and believing. Its amazing what giving it all to God can do for your life. Now, after all this time we are going to be okay. Paul won his SSI disability hearing and of today he starting making a monthly income. I do not have to do it all alone now and lay awake nights trying to figure things out. He has not got his back pay as of yet. We are using a lot of the back pay to purchase a handicapped accessible van since we were unable to raise enough funds to get her one. We did raise some and thank you so much for all that helped us do that. So, we are looking at used ones with low millage. Its a decision Paul and I made together. Its so hard for her getting any where with out one. I am getting older and she is getting bigger so lifting her to the back seat of the van with out help confines us to home all the time. Paul is not strong enough to help with the roll away ramp. We would like to do things with Lizzy by ourselves. I would like to take her by myself to visit her great grandmothers or the grocery store. We are unable to do that. We will all gain independence from getting Lizzy a handicapped accessible van and she will be able to stay in her power chair and look out the window. When this will happen I have no clue that is the just the plan!  Would be great if its soon!! It will all work out. You just have to believe!! My stepmother said on her death bed when she heard Paul won his SSI disability " You and Paul are going to be okay, now" She had compassion and a look of relief when she told me that. She is watching over us. I miss her so much it hurts. I accepted the fact she was going to die. I  just have not accepted the fact she will not be in the physical world in my life.

Lizzy has been doing great!!  She is very excited about Christmas this year. She has not made a list yet so we have no idea what she wants. She says " She has everything she wants!" I am like huh? That statement coming out of the mouth of a 10 year old!! I am sure she will figure out something or she is taking after me and my frugal ways I have developed in the past 10 years! I doubt she is taking after me. 

Have a great Thanksgiving!! 

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

www.our-sma-angels.com/elizabeth

Celebration of Life for an Inspiring Woman- Living with Spinal Muscular Atrophy

A Celebration of Life for a woman who really influenced my life was today Oct. 31. My stepmother Rosalind Reed lost her life to Cancer on October 25,2013. She was just 70 years young. I do not like calling her my 'stepmother" She was more like a mother to me. She helped me so much figuring out difficult situations my whole adult life.  I feel like I lost one of my best friends. Before, Lizzy was diagnosed we did so much together for so many years. We went to auctions when I was a kid. We had fabulous holiday gatherings with her and my dad until her passing. She took my us with her everywhere with her for many years. Horse shows, craft shows and so many different places. She just really enjoyed life!! She was very much loved by all that met her.
Please, say a few prayers for our family and mainly my dad to get through the days ahead with out her.
Her illness and diagnosis was so quick. I have cried for over three weeks trying to be able to accept that is was her time soon. I think it was one hardest things I ever had to handle. Part of my heart died with her I think. She was a wonderful teacher.mentor and a great friend. Its so very sad.  I just thank God for having her in my life.
She thought I was not happy because I have been home all the time taking care of Lizzy the past 10 years. In truth ,I told her" this is what God had planned for my life."  I accept it and it okay. I am fine.  The people I have met in The SMA world are some of the kindest sweetest people that I have ever met. God picked me to help take care of Lizzy and now my husband too. I am very good at what I do  I am not unhappy with my life at all.
Roz will not be physically in this world  with us but, I know she will be watching over me and my family. We will be together some day again. I know we will. Thank you Roz for being in my life. I will cherish the memories forever.

So what is the Plan? Living with Spinal Muscular Atrophy Type 1

Its been a very unusual last few weeks.
Lizzy was 10 on Sept.29 and had a great birthday party with her cousin Robby at my daughter Dana's house on Sept 28,2013. The date was my sister's birthday whom lives in Florida. Lizzy had a great party . She wanted all kinds of candy and that is what she got!! Thank you all that sent her presents!!

 On Tuesday evening a very special woman in my life had an accident in the bathroom at her home and fell. Next thing ,we knew she is on her way to the ER in Bloomington,IL On, Wed we get the news that she has melanoma all through her body and some in her brain. It was a day I thought my heart would break. My stepmother has been one of my guiding forces to be the person,  I am today. She kept me strong when I thought I could not go on and always helped me figure things out. My childhood was not always easy because my mom was sick a lot. I needed a strong women in my life. My Aunt Ginny was one and the other was my stepmother Rosalind Reed. This woman was always there for me through the rough times and the good. She was at all the kids/grandkids parties and always was a good grandma. The cancer doctor came in and told us "she may have a few months". Then, she had an MRI results where back on Thursday and the doctor said " Just a matter of days" Can you imagine going into the hospital for a fall and find out your are going to die in a matter of days? She thought she would have about 10 more years at least. She told me "I was her favorite." I just can not grasp a hold of this..... what is my life going to be like with out her? She is the matriarch of our family. I am having a hard time with this. She is home now on Hospice. She is such a strong lady. Now, it will have to be  just me now being the guiding force for our family. Am I ready to do this?
My nephew told the nurse" I do not believe in God.... he is taking my grandma away" The nurse turns to him and says" God always has a plan. There is Good with the Bad and just maybe, with out your grandma you will grow up and be responsible like you should be at age 20." Mighty powerful words but true... Roz always bailed him out of trouble and spoiled him rotten. He was her "Baby Boy". I think my nephew just better start believing quick in God. He might have a rough road a head if he doesn't.
Tears have been dripping off my face for three days and I can not seem to pull myself together because, my heart hurts so much.
Another bitter sweet thing happened on Thursday. Lizzy's dad signed all his rights over. How could anyone give up on a child like he did? Pure selfishness. He has not been there for or has he provided support for her. He was a "Show daddy" only there on birthdays and Christmas. He did buy her gifts for those times but he did not for the 10th birthday. I hurt for Lizzy but... I feel we can quit worrying. he can not cause us any more pain or drama. God has a plan for us and I would like to know what it is but ,I guess I will wait until future to see what good things are instore for us.
I will miss my stepmother so much and I pray my dad will be okay with out her. I do not think I have been through so much heart ache in one week as, I have been this week. I will cherish her last days with us.

Lizzy has been doing great. Got all her test results back from Madison and her diet is PERFECT according to the test results. Yeah!!!

Please, love your family every day like it your last. You never know when you are going to lose some-one dear. I just pray God will get me through to the next chapter in my life and helps me deal with the pain I am feeling. I know every one has a time to die but to lose someone when they just turned 70 years old a few weeks ago that is like a mother to you hurts so badly. She was only 15 years older than me.
I pray God takes her with no pain. I love this woman with all my heart. She has made a bucket list of things she has to get done before she dies. That is so sad.
Please, add prayers for my family in the weeks a head to be able to cope losing such a wonderful part of our lives.
"We believe in miracles because, we live with one!"

www.our-sma-angels.com/elizabeth