Christmas 2012

Just a few pictures from our Christmas. Such a fun time with all of our family this year. Both of my sisters were able to make it this year as well as my grandparents (my mom's parents). I'm so thrilled that even in their early 80's they can still make the drive over the mountain in the winter! So much fun when we all get together. As a little girl, every Christmas Eve was spent with my grandparents in their home. This year we spent Christmas Eve at my parent's and Christmas day here at our home.  Before Christmas dinner, the kids and most of the adults headed out to go sledding at a nearby hill. They had a blast.

As always, the food and company were great! And we spent quite a bit of time watching family videos on the theater screen. SO fun! Makes you feel like you are really there! Amazing what technology can do these days. Steve has wired our system now so that any video we take with our phone we can immediately view on the theater screen! So, any videos or pictures we took over the past few days we were all able to view together. Lots of memories made. So blessed. Merry Christmas to all! 

My grandparents

Making ornaments!

I just love making ornaments with the kids. One of the best things about the holidays, for me, anyway is all the crafts we can do. Love them! Tonight we spread some newspaper out on the table, got out all of our paints and paintbrushes, glitter and ribbon and went to work! We tried a few different things this year. My favorite was the glitter-filled ornament with Christmas lights inside. So cute. Josh really got into it this year too. This was the first year that I've seen him get so excited about arts and crafts. :)

Josh's ornament

Working hard! 

Christmas is coming!

Over the weekend, we decided to put up our tree. We normally do put our tree up a bit early. Having an artificial tree, it makes it easier I suppose. However, we don't keep it up for very long after Christmas. It's usually down shortly afterwards. I love Christmas and all the decorations that go along with it. So fun! Now all we need is some snow!! 

School Pictures

I was so pleased with how Jorie and Josh's school pictures turned out this year. Still have yet to receive Ryan's. But hopefully soon! Love seeing them change from year to year. I went through all of their school pictures the other night lining them up and seeing the grow up. Hard to believe Ryan will be done with school in about another year and a half!

Tabitha

This is sweet Tabitha with one of her big brothers. She is the second child that this family has lost to SMA (Spinal Muscular Atrophy). As I type this post, she is breathing her last breaths on this earth and will soon be united with her big sister, Taleah who passed away in 2004 from the same awful disease. As a mom of a child with the same terminal disease, this hits way too close to home. We have seen our own precious son in grave condition far too many times to count. And each time he is sick, we worry it will be his last. I often find myself asking why? Why do these precious children have to suffer and die? Why do these families have to grieve such a loss? A loss that hopefully most parents will never have to face?? It just seems so unfair. I suppose nothing in this world is fair. We live in a fallen world where children get sick and die. And I just pray that this family feels the love and prayers from people around the world praying for them and their sweet daughter. 

Jorie is TEN!!

Thursday was Jorie's birthday! She is 10!! She has said many times since her birthday that this was the BEST birthday ever. If you know Jorie, you know she is very fond of animals. However, neither Steve or I are really animal people. In fact, other than a few fish, we have not had a pet in our home since Ryan's service dog, Ivy! Jorie has been begging for a pet of her own for so long now. So, we decided she was old enough that she could take care of it herself and surprised her for her birthday with her very own guinea pig! She named her Lauren. She is so sweet. Jorie LOVES her and won't put her down. Just wants to hold her all day. Of course, Josh is enjoying her too and even Ryan likes her. What's nice about her is that she'll just be content to sit in your lap. This is nice for Ryan since he can't reach down to pet a dog or a cat. So, something that sits in his lap is perfect! We enjoyed a nice steak dinner (Jorie's request) and had Grandma and Grandpa over as well as Josh's neighborhood buddies. Jorie had her friend birthday party last summer. So, this was really just family. We do it that way so that all of her friends can attend. When we wait until October, not very many can attend due to illness. This seems to work out better!

Some new earrings and a coloring book from Grandma and Grandpa

Cute stuffed animal from neighbor, Joaquin

Jorie,  Joshua and Joaquin 

New shirt from mom and dad

Another coloring book from mom and dad

Ipod from mom and dad!!!

Best surprise of all? A new guinea pig!

Having dinner with the neighborhood kids :)

Where is my fly swatter when I need it?!

Jorie's birthday was on Thursday and her dinner of choice was steak!!  I thought that was kind of a funny choice for a little girl. But, it was her birthday so we BBQ'd steak! In the process of  BBQing, some very annoying flies entered our home. I thought we were done with flies. But, I suppose a couple of warmer days brings them back out again. They have been hard to get rid of surprisingly. It didn't help that I couldn't find my fly swatter until yesterday! But, yesterday morning Ryan came into the kitchen complaining that the flies were bothering him while he was trying to eat his breakfast! Ryan is unable to swat the flies away making this even more annoying for him. So, I did my best to shoo them away. It reminded me again just how much we take for granted in this life. Just the ability to shoo a bug away!! And how strange it is that Winter means no more flies but it brings with it even more dangerous bugs!! So, while the flies are VERY annoying!! I will take them ANY day over a serious VIRAL bug for Ryan!

Update

Me and Ryan enjoying some sun

Josh working on his homework

The kids before school this morning

We enjoyed a nice weekend at home. Jorie had a soccer game on Saturday. Steve took her this time as I had to stay at home with Ryan. Anything lower than about 60 degrees is just too cold for him. It was so nice that Steve was able to go as he has missed most of her games this season. I will be doing my best to get through this week with healthy kids as my helper (my mom) is out of town for the week! My parents left for Georgia yesterday and are heading home today with a new wheelchair van. They flew there and will be driving the new van home! They will enjoy a nice drive back, stopping by my aunt and uncle's on the way home. My aunt will be happy to see her sister. She struggles with Alzheimers but still knows my mom. It's always a nice break for my uncle as well as he is her primary caregiver.

Just how important a chair can be

Sitting on the couch with Jorie

On the couch, Ryan age 4

Learning to drive (18 months old)

Over the weekend, Ryan's power chair just stopped working. And I mean it STOPPED working. It would not do anything. When we say Ryan's chair broke down, to most people, they think this just means Ryan cannot get from point A to point B until it's fixed. Sadly, this is not so. When Ryan was little, it could be said that his chair's main purpose was to get him around. He didn't need much else other than the support it provided (holding his weak body upright) and to get him around the house or the mall etc.. so we weren't having to carry him or push him in a stroller. When he was smaller, we could just set him on the couch if his chair broke down. Nowadays, things are just a bit different. Sadly, it wasn't until his chair broke down on Saturday that even I realized just how weak my son had become in just one year. Ryan's disease is degenerative. So he will always continue to get weaker. As sad as that is.....it is just part of life with SMA. We got his current chair in December of 2011. So, it's still fairly new to us. But, before that chair he had been driving around another chair since about the age of 10 or so. He usually uses each chair for about 5 years and then moves on to a new one. On Saturday when we placed Ryan in his older chair to be used as backup until his current one was fixed, we soon realized just how weak he had become over the past year. He can no longer drive his previous chair as his left hand has lost so much strength. (the old chair has a different joystick...one that is alot harder for him to control) This meant we had to push him around the house to get where he wanted to go. This also meant he couldn't control the other functions his chair does for him.....recline, tilt, leg elevate, seat elevate etc... When he can't move his body into the proper position, he cannot swallow...yes even his own saliva. So, this meant for most of the day on Saturday, he did not eat much at all. This only added to his frustrations! It also meant he could not get comfortable. Ever since Ryan's spinal fusion in 2005, it changed the way he swallows forever I believe. So, if his head is not in just the right position, he simply cannot swallow. He uses the features on his chair to get him in the correct position for this. And when he can't even control the joystick, this becomes impossible. You can imagine our joy when our wheelchair guy showed up first thing this morning with Ryan's chair all fixed!!! You would have thought it was Christmas over here. I immediately got Ryan out of the old chair and into his new one and the look on  his face was priceless.

Cousin fun!

Enjoying dinner together 

The kids in 2005 

We recently had my niece and nephew stay with us for about a week. The kids had so much fun together. I thought it would be fun to post a picture from several years ago and one from this last visit. Amazing how much they have changed! The kids all get along so well. Even Josh who is so much younger has fun when his cousins come to visit. Just wish they lived a little bit closer!

Just a little update

Jorie with her new retainer!

Josh and Ryan with their spiky hair

I love this time of year! Fall has always been my favorite season. The cooler weather, the beautiful fall colors and the upcoming holidays. Who wouldn't love fall? 

We've been staying busy with all the back to school activities. Jorie is in soccer again this fall. She LOVES it. And Josh is now attending school one more day than he did last year and one extra hour too. Seems really strange to have the whole house to myself for a few hours each day. But, it gives me time for exercise and grocery shopping free of kids. Ryan is doing well in school and is adjusting to having his new nurse with him. I can't believe how quickly time flies. As I pick up Josh from school each day I can't help but think back to when it was Ryan that I was picking up! Hard to believe how fast it really goes.

A special lady

Today those of us in the SMA community and those who knew this woman, Amy, are incredibly saddened. She lost her battle with SMA last night. She was just 41 years young. And while she outlived her prognosis and several of her siblings (that also had the disease).....it doesn't take away the pain of losing such an amazing woman.

I had the opportunity to meet Amy on several occasions when we would go to the SMA conferences. She was at every conference and I can still remember her sitting there at the assistant dog "booth" showing others her special dog. She even gave birth to 2 daughters which is incredible considering most with this disease could never carry a baby much less for 9 months! It truly is a miracle that she was able to due to her twisted body. Effects from years of this horrid disease.

I'm pretty sure I can speak for most families affected by SMA that when we lose one person, we ALL grieve. It's as if we have lost a member of our family. And even if we didn't know her really well, it still hurts to know yet another precious life is lost to this awful disease. It robs people of so, so much. Please keep Amy's family close in your thoughts and prayers. They lost an amazing mother, wife and friend.

Joshie

Water balloon fun!

Playing with cousin Elliott

I really wanted to share a few things Josh has said recently before I forget! We always think we will remember the cute things our kids say and sadly, we usually forget if we don't write them down! So, here are a few of Josh's!

Towards the end of the school year last year, Josh's preschool teacher approached me and shared with me something Josh had said to her. She was very impressed and even got teary eyed as she told it to me. Josh had this conversation with his teacher, Miss Debbie one day.

"Miss Debbie, are you going to heaven?" 
"Yes, Josh, I am going to heaven"
"Is your family going to heaven?"
"Yes, my family is going to heaven."
"I know someone in a wheelchair who's going to heaven....My brother is going to heaven someday"

(I think there might have been more to the conversation....sadly this is all I remember!)

She shared this story with me one day as I was dropping Josh off for class. She said when he was asking her these questions, all the kids had gathered around and it was as if Josh was preaching to the class about heaven. She said it was really cute and that she got teary eyed listening to him. I thought it was so sweet and truly Josh has been listening. We do talk about heaven quite a bit in our home. When you have a child with a terminal illness, it's hard NOT to talk about it. Ryan is not scared about death or dying and neither is Josh! Jorie isn't quite as vocal about it. But, I'm thinking she has a pretty good perspective about it as well.

The other day I was working in the kitchen and Josh said to me...
"Mommy, when I talk to God, He doesn't say anything back"  "I say, God?" 
I tried not to giggle at this. But, explained to him that God speaks to us through the Bible and to our hearts. He seemed to understand as we talked about it again today. I thought that was so sweet.

Pictures in the park

                    Thursday evening, we loaded the kids up in the van; as well as my niece and nephew and headed to a nearby park for pictures! I was thinking back to the last time we had real professional pictures taken of our family. And the last time I can remember, Jorie was a baby! Needless to say, we were way overdue! I had originally wanted this session to be of just the kids. But, the photographer snuck a few pictures in of me and Steve as well. She also photographed the kids with their cousins and I can't wait to see how they all turn out. Here are two pictures from our session. I have to wait a couple weeks before seeing the rest of them. She is so great with kids! We had been going to another place for years (since Josh was a baby) and they recently went out of business. So, we gave this gal a try. She did a great job!

Our journey with SMA

Along the road of this SMA journey, there have been many different heartbreaking moments. Little moments where I am reminded of what my child cannot do. As hard as I try to ignore those moments, they are there and are sometimes impossible to ignore. When he was little, it was recess. I can still remember like it was yesterday, trying to come up with other options for Ryan while the other kids ran outside to play. He would usually stay inside to avoid the cold (even 60's was cold for Ryan) and play board games with a chosen friend who would usually volunteer to stay inside with him. As the years passed, finding that one kid to volunteer to give up their outside recess became more and more difficult. Until eventually, Ryan would spend that time alone.

As he got older, it was sports. All the boys his age seemed to be involved in some sort of sport. When it comes to sports, Ryan can play them on a video game or watch them on TV. We are thankful that technology of today allows him to do this. But, it still stings a little that he can't be outside playing the sports he so LOVES to watch others play.

I would have to stay the most recent reminder of the reality of my son's disease would be the "driver's ed" brochures that are sent to us in the mail over and over again. I am sure they send them to every 15 or 16 year old kid in the school. But, when we receive ours in the mail, I can't help but feel a twinge of sadness for my son who will likely never drive. Or at least not anything larger than his power chair.

I remember there was a time when the kids Ryan's age were first beginning to be independent. I would comment to Steve when I would see them. "Look, they are riding their bikes without their parents!" or "they are at the swimming pool and they are with friends, not their parents!" I remember how odd that seemed to me. Even more so, because at the time, Ryan was maybe 11 or 12 which meant that Jorie was only 4 or 5. Having an independent child seemed so foreign to me. I couldn't imagine having them do anything independent of me or Steve. Now that Jorie is older, I am getting that first taste of what it's like. But, it still seems so strange to have her help prepare a meal or want to be alone with a friend in a store! It does seem to take some of that sting away having 2 children who are not completely and totally dependent on me. I am thankful for each and every ability they are able to do. Because I know that each and every thing they are able to do is a miracle and a blessing not to ever take for granted. I have said it many times before, I am thankful for so many things that I never would have even thought about if Ryan had not come into my life. I can safely say that Steve feels the same.

Bandon Beach trip part 2

Decided to break this post up into 2 different posts as I had so many pictures to share! The weather while there was awesome. Ranging from 60 to 65 for the most part. The last day we were there, it was amazing weather. I think we even hit 70! For the Oregon coast, that's pretty nice. Ryan was unable to go down onto the beach. It has never been ideal for Ryan to get down to the beach. Even when we had the sand wheelchair. He's pretty content to stay in the house playing games with his dad or Uncle Bill or whoever is there with him. The last evening we were there, we convinced him to come out with us on the paved pathways surrounding the house. Got lots of pretty pictures from our walk! It's so much fun just being together with family. We were sad that my younger sister couldn't make it this time. She was missed. 

The whole gang! 

Family photo

And one without sunglasses for Steve and I 

My dad, Ryan and Steve enjoying the view

Ryan with grandma and grandpa

My parents with 5 of their grandchildren.