It's a Great Life...

Some of you may have seen a story about a newly diagnosed baby girl with SMA and her Bucket List. This story hit national news this week. What many don't know about is the debates this has created within our SMA community. It is great that a family wants to have a fun way to create memories with their little one, as none of us really know how much time we have with each other. However, some comments were made on the blog that offended many of the parents and children living with SMA. Things such as they didn't want to spend their time at doctor appointments, they wanted to enjoy every moment they had, and that kids who use machines didn't have a good quality of life. When someone questions the quality of life of our children, SMA parents will not let that go without a response. I have quietly read through the endless debates that at times have gotten really heated. There are many opinions and good points made, but what always strikes me is how this all begins.
You all know, when we were told about Ella's diagnosis, we heard, "She may not live until her second birthday. There is nothing that you can do." It is like this sick script that all doctors use. I heard talk about needing to decide our position on having to trach Ella (breathing tube in her neck). I was looking at my daughter, smiling and sitting up and I just wanted to shout, BULLSHIT! I questioned them, asked specific questions and they looked at me like I was crazy, like I was a Mom who just couldn't accept the truth of the diagnosis. The truth is, the doctors I saw (minus my wonderful pediatrician) and the doctors most families see DONT' KNOW A DAMN THING! I feel like their blatent lack of knowledge and lack of wanting to learn have created this false perception of SMA. Rather than seeking an experienced SMA doctor's guidance, these doctors give parents no hope and send them on their way, "Go home and love them." It is ignorance and malpractice in my opinion. Some parents never learn more and they lose their children due to the misguidance they receive.
I wasn't going to take their word for it. There was no way in hell I was going to sit by and let someone tell me there was NOTHING I could do for my daughter. And so, I stumbled upon my first sign of hope...a beautiful little type 1 girl who was 4 yrs old, Kaitlyn. I will never forget the night I saw her. I cried so hard because my heart filled up with hope. I spoke with Kaitlyn's mom, who told me about another SMA family, who told me about another, and another. Soon I found this secret world of amazing families living with SMA. I thank God all of the time that I found these people. I learned the equipment I needed, how to care for Ella, toys she could use, questions to ask, meds to use. To these veterans it was second nature and it worked. Interventions in respiratory care and nutrition were saving these children. I began to see older kids, teenagers and adults with SMA! Why hadn't any doctors known about these people? Ignorance. Although only in this world for just over a year, I too have the responsibility now to help others like I was helped. I cannot stand silent while more families are given the information of no hope. It seems like every day a new member joins our online group and were given the same outdated info, and it sickens me.
But, because of the differences of information, some then begin to question the quality of life of SMA kids. The different machines, the amount of time spent caring for them, etc scare some and they assume that these kids are not happy. I will tell you, SMA kids are the happiest kids you will ever see. Despite the difficulties they face, they are always smiling. Some are not strong enough to smile but you can see it in their eyes. They are the smartest kids you will meet too, and no I'm not just biased :) They are much more mature, communicate well whether by speech or technology, go to school and graduate college! Why didn't the doctors tell me about that? Hmmm.?
When a family is diagnosed the doctors should say here is all of the equipment you need, here is the diet that works, here are some families to contact, and there is HOPE. If you found out your child was diabetic and needed insulin, there would be no option for it. They need it, they get it. That is how SMA cares should be. "Go home and love them, enjoy every moment,"? What the hell do you think we all do? Painting, family vacations, ball games, swimming, laying in the grass watching the clouds....these and so many more things we can do with our children, and do longer because we have ways to help them. Quality of life, I dare anyone to spend one day with an SMA child and say they don't have quality of life.
Ella may have machines that help her, that have saved her life....she may have to do treatments she doesn't like, or excercises to maintain her strength. She has to use a wheelchair and needs help with everything. But, its our life. We were chosen to take this path and we are enjoying every moment of it. SMA or not, our life with both of our children is wonderful...It's a Great Life!

Surprising Miss Know All :).....

This is the one time that I will admit that I am Miss Know All :) I like to know things. I like to know what the kids had for lunch while I was gone, how Brandon's business meeting was a work, you know stuff. I like details too. When Brandon says his day was fine I want details. What meetings did you have today? Did you think it went well? What did you have for lunch? Lol, to some I might seem nosy at times but my family knows that although slightly annoying, it is just because I care. So, I tell you this because it is nothing short of a miracle that my husband was able to throw a surprise 30th birthday party for me! That's right, completely 100%, not a clue, in the dark, oh my gosh what a surprise!! Never in a million years would I have thought that he would have done this for me...or had been able to pull it off without a hitch :)
As far as I knew I was headed out to dinner with Brandon, at his favorite restaurant :) I gave him a hard time and told him, why don't we try something new. But, he insisted. I teased him about wanting his favorite food on MY birthday. What an ass I sounded like! My parents came to baby sit the kids, I had dinner in the oven for them and as soon as we left they scrambled to get the kids ready to head out the door to get to the surprise party. My poor parents! It makes me giggle to think about them trying to get both kids ready, pack a diaper bag, grab Ella's stuff, turn off the oven, and get into the van by themselves for the first time, while under pressure!! Hehehe :) But, they did a great job.
Brandon was totally trying to stall, while it was happening I didn't realize it though. He took his sweet time getting gas and even made a fake bathroom stop that lasted forever, trying to give my parents a head start. We arrived at Grisanti's and the waitress grabbed our menus and started to walk us to our table, but she kept walking. I thought, "Why is she sitting us back here?!" She started to open the door to the party room and I saw my friend Kelly's face. I thought, "Why is Kelly here?" I still didn't get it!! Not until I was in the room and my family and friends yelled "SURPRISE!" did I realize it.
My husband helps out a lot, is great with the kids, a very hard worker, and a laundry list of other things....but planning a party?! Who is this guy? :) He met with a caterer, picked a menu, wine, and chose a sweet quote for the top of the menu. Seriously, who is this guy? Hahahaha. It was a wonderful evening with all of those who I love dearly and wishes from those who were unable to attend. It felt so wonderful to have something done just for me. My mother-in-law told me, "Brandon said that if anyone deserved a party like this that it was you." Awww, talking sweet about me too? He earned unlimited points :) After 12 years of being together and almost 6 years of marriage it amazing that my husband was able to fool Miss Know All, and amazing sweet too! I love you dear!

Missing Grandma Dolly.....

I have not been able to post in so long. Everything has been too busy :/ After fighting off pneumonia and then finding out she had more cancer, Grandma Dolly, spent her last weeks at home with all of her family and passed away on March 24th. We are so thankful to have had a little more time with her but now she is gone. And it is just weird. I expect to see her when we go to their house, I keep saying "Grandma and Grandpa's house", and we just had to celebrate our first holiday without her here. Easter was as usual but Grandma wasn't there to hug my kids, to tease back and forth with my dad or to eat up the sweets. She also wasn't sitting next to Grandpa at the fundraiser the night before. The worst part by far is having to see Grandpa without her. He loved her so much! They met at a dance and went on their first date on Valentine's Day. A month later he proposed to her and 5 months later they were married. This summer would have been their 65th wedding anniversary. I think about how he always took care of her, how he held her hand as she was dying, and how he told me "I just want Momma back" after she passed away. He is heartbroken and missing his love, and that is just so hard to watch. My mom, her sisters, and brother are all having a hard time as well. I try to tell everyone that I know she is in Heaven, and that she is so happy watching over her beautiful family. It comforts me to know this and I have been able to contain my own sadness over missing Grandma. But, it is near impossible for me to choke back my tears when I watch Grandpa looking at her picture, touching something of hers, or talking about great memories he has. Were they perfect? Of course not. They occasionally fought like any other couple, Grandma would nag him, they have been through great highs and deep lows, seen so much in their life together but nothing ever changed how much they loved each other. They were in love, and still are. I cry as I think of this but feel Grandma around me, giving me a little squeeze and telling me it will be okay. Grandma I love you, you are an amazing woman <3 I know you are surrounding us and watching over us but I sure wish I could give you another hug.....