We moved :(

It finally became clear to us that we were not going to be able to stay at our home so this morning we began packing and have officially moved out of our apartment :*(

We got a storage unit close by and for the next 3-4 months all of our possessions will be there. We plan of living with Brandon's parents and saving every dollar we get so we can pay off our debt and get back on our feet as soon as possible. I guess Brandon's right "Its not living with your parents when you have no other choice that makes you look bad, its getting comfortable and never leaving that does." And even with that said I still can't allow myself to believe it.

I feel like I just failed so bad...like Im just some loser living with her in-laws because I couldn't seem to keep things together. I KNOW IM NOT and I know that everyone at one point in time will need help from parents but why does it have to feel so bad? I see my daughter sleeping in her uncles room with her dad and I on the floor next to her and it just breaks me to pieces. I mean, I have worked so hard in my life and have beat so many odds that seeing myself like this just doesn't feel natural.

Although I understand how lucky I am to have in-laws that are willing to let us inconviniece thier home, I still am just ashamed. Im really trying to divert all my energy into Bella and getting her more options and more resources but days like today really poop me out.

Either way, Im still in Corona and thankfully I at least get to keep my in-home physical therapy and Inland Regional. In-home nursing...gone. SSI benefits...gone. I dont know what God is doing with my life but I hope it all works out in the end. It really feels unlikely considering how my life has been going over th last 2 years but nevertheless I have hope.

All the money that people have and are still raising for us will go to keeping our cars (since we have already been told they are going to repo one of them is we dont pay the entire overdue balance by this Friday). After that is settled, the rest of the funds will go to the SMA website that raises money for SMA clinical trials.

On a good note, I spoke with Dr. Wang (pronouced "Wong") from Stanford University and it turns out his hospital has a program to fly SMA patients and their parents to his clinic at Stanford free of charge. He is willing to see Bella and give his expert advice on how we and her doctors could best help her.

I, quite honestly, cant believe that one of the worlds leading experts in SMA from Stanford University is willing to help but by golly I sure am grateful. I feel sooooooooooooooo good knowing I have landed my daughter in the BEST hands out there. The experienced, knowledgeable, and talented hands of Dr. Wang!!

Tomorrow I plan on printing the papers out that Dr. Wong has emailed me regarding the free flight and setting a date.

Another highlight of my day was that I recieved two packages from the FSMA.org website and non-profits. The first package was a gift basket of SMA-friendly toys, a swing, a childrens bedtime story book , a parents book about coping with a child who has devestating life treatening disease, and a real sheap skin blanket for Bella to sleep on that helps keep away the skin break down and also keeps children that can't really move themselves around while sleeping more comfortable. They sent along with the package a letter welcoming us to the FSMA website and also stated that they were going to send us a Red Wagon for Bella to take walks in!!! SOOOO AMAZING!!!

The second package was a "Car Bed." Children with SMA find it very hard to breath if they are sitting in an up-right posotion so its recommended they be laying down when ever possible. Therefore, traveling in a car seat is out of the question. I had run across an "equipment pool" that was on the FSMA website and saw that they had a car bed perfect for Bella's size. I shot them an email telling them my story and within a week the car bed showed up at my door :D CAN YOU BELIEVE THAT!!! Talk about gracious and wonderful people! I dont know where i'd be had I not come across the FSMA website and group. This group of very intelligent and profound parents has already made a significant change in our lives and it hasn't even been a month since we were diagnosed with SMA and joined their group.

You know, after writing everything out, I guess things aren't THAT bad. I'll eventually get another house, my daughter is still alive, our dogs still love us, and we are still together as a family and making sure everyday that we don't fall into the "pitty me" cracks that surround us.

We WILL get another home of our own. We WILL get Bella the stem cell treatment. We will survive. It just takes time and I have to be patient and faithful.

Before I end this little blog I wanted to thank you guys for following our story everyday.
For sharing it with others.
For donating to help us.
For hosting fundraisers in Bellas honor
For writing us encouraging emails, comments, and letters.
And most of all for fighting along side of The Bearberena Family.

Every breath Bella takes is a gift from the breath of God and you guys make it possible with your prayers and support.

Brenda