My amazing boy

Through the years, I would have to say one of the hardest parts about Ryan's disease is seeing him suffer or struggle. With this disease, SMA, suffering (emotionally or physically)  is par for the course. For a parent to watch their child suffer is unbearable really. Just recently, there were 2 events where I began to tear up just hearing bad news about my boy. And it was Ryan who actually helped me feel better!

The first happened just a couple of weeks ago while we were out of town in Chicago. I got a phone call one day from my mom who began to tell me about Ryan's morning. She had been getting Ryan ready for school and during the process, Ryan had asked her to move his arms down. (he was laying on the bed getting dressed). So, she moved his arms down. What happened next was a shock to her. Ryan said, "Grandma!" "I can't move my arm at all!" "It's SO  heavy!" (now keep in mind that Ryan has little to no use of his arms when he is lying down.....gravity works against him...but, we have never heard him tell us that he couldn't move them at all!) My mom explained her concern to me over the phone and we talked a little more and hung up. At the time, I was at a restaurant with my husband and we were just about to order. Tears began pooling in my eyes thinking about my son losing what little strength he had left in his arms. Suddenly, I realized it was Ryan's lunch time in Oregon. (a 2 hour difference and I knew he was still in his lunch room at school) So, I texted him to ask him about it. I LOVE being able to text my son! And his reply both shocked me and turned my midday meal with my hubby into a happy one instead of a sad and worried one. I asked him about his arms and his reply to me was. "Oh don't worry I'm fine!" "It was just a case of morning arm"  (Sometimes when Jorie wakes up with a stuffed up nose, we call it "morning nose") ...After I read those wonderful words from my son, I felt so much relief and sadness leave me immediately. I knew he was okay and even if he wasn't okay, his attitude about it all was okay and that made ME feel okay. Knowing my child accepts his disability is an incredible gift he gives to me. When I think I can't go another day with this disease, I see how Ryan is mostly happy and I think I can definitely do this!

The second happened very recently....Ryan is currently battling a cold. So far, we have hope that it won't travel into his lungs. But, this evening he started to take a turn for the worse. Feeling chills and getting a fever. As usual, my mom and I share in his care and he happened to be at grandma's house when I began to text him to see how he was feeling. His reply was short explaining that his nose is a little less stuffed and then he wrote , "fat man in a little coat!" A line from a Chris Farely movie. How could I not smile when receiving a funny text from my boy? I just love that boy and am so proud of his perseverance with such trials in his life!

2 year old Ryan (always a favorite!) 

American Girl Doll Store

One thing I was really looking forward to with this trip was a visit to the American Girl doll store in Chicago! Of course, it would have been a lot better if Jorie had been with us. But, I promised to take her the next time we were near an AG store! As it turns out, the AG store in Chicago is one of the biggest in the country! So much fun to visit! They had everything you can imagine for your AG doll. Doll hospital, restaurant, hair salon and T-shirt decorating station were some of their attractions. Not to mention rows upon rows of dolls as far as the eye could see! This would have been heaven for me when I was a little girl. Well, I suppose it still is! :) Definitely worth visiting! The AG store was one of many stores in this 8 level mall we visited! Such a fun place to walk around! Right outside the door of the doll store was a Lego store. So, Josh (and probably even Ryan) would have enjoyed that! We'll have to make sure we visit again with our kids. :)

Trip to Chicago

We had a lovely trip to Chicago, Illionois! We left Friday afternoon for Portland to head over to my grandparent's home. They would be traveling with us to Chicago. We stayed overnight with them and prepared for a VERY early morning the next day!! We had to get up at 4:30 am for a 7:00 am flight! Unfortunately, I didn't get much sleep. 2 hours to be exact! Steve got a tad more than I did. But, we were ALL tired that first day! Getting to the airport that early, we had no idea if it would be crowded or not. But, hoped that it wouldn't be. It was SUPER crowded and we waited at least 30 to 40 minutes in line just to check my bag! From there we headed to security and literally had to run through the entire airport to make our flight on time! We made it with 5 minutes to spare! Have never cut it that close for a flight before! So thankful we made it! That first night we met up with my cousin and her family as well as my Aunt and Uncle at a local restaurant. Amazing food and amazing company of course! For dessert, the restaurant sets out marshmallows, graham crackers and chocolates and as you head outside there are 2 fire pits to roast marshmallows at. Very unique and fun! But, the fires sure felt good. It was COLD! 

We spent our time visiting with family at my cousin's home, driving around, trying out different restaurants and a little shopping. I say little as I hate paying sales tax! Not to mention we can't fit much into our luggage when we are flying! The last day we were there we drove to the city and spent the day there. I think my favorite was going up into the John Hancock tower. Such a beautiful view of the city! We missed our kids as always when we are away. But, it was good to spend time together just the two of us; as well as see my Chicago family. My Aunt is getting more and more advanced in her Alzheimers. It is so sad to see. But, I was able to capture a happy picture of her. Each time we see her, she is a little worse. But, we are thankful for this time together!

My grandparents, Uncle and my cousin and her family

Aunt Karen

Lunch at Ed Devebics downtown Chicago

View from the John Hancock tower

Washing windows

Family photo

Our attempt at a family picture over the weekend. This was the best out of the three that we took. And I wasn't too thrilled with this one either. But, here it is! 

Projects around the house

January was a tough month. I ended up with FLU, despite my flu shot last fall. But, we are SO very thankful that no one else caught it! I was cleaning, lysoling and bleaching everything I could think of to keep everyone from catching my germs!!  We hope and pray that we can make it through the end of this flu season with no one else in our family catching the flu. Even though I did end up with flu, it was a much milder case, I believe, because of my flu shot last fall. So, in between being sick and all the normal daily routines, I found some projects on Pinterest that I wanted to try. We got the supplies for these projects a few weeks ago and they sat in our garage for a while. When we finally found a day to devote to them, I was a happy camper. :) The first project was in our bathroom. I wanted to find a way to organize the kids' towels and toothbrushes. Making our countertop less cluttered and also encouraging them to hang up their towels after a bath/shower. I figured with the hooks, it would be a lot easier for Josh, at least, to hang his towel back up to dry. So far, it has been working well!

The second project was in our laundry room. We installed hooks for backpacks and coats as well as put bulletin boards above each child's hook to place important notes, homework or school reminders. This was also a Pinterest inspired idea. It's a little different than what I found online. But, it works for us.

Monday mornings

This morning was rough. But, Monday mornings usually are. Out of my three kids, the only child that I can count on to get herself ready and get the things she needs for school, (other than her lunch of course) is Jorie. I still pick out Josh's clothes for the most part and make his lunch, comb his hair, make his breakfast etc. For Ryan, getting him ready for school requires a fair amount of time. He is showered first, then dressed, face washed (sometimes shaved), breakfast made, teeth brushed, coat put on, shoes put on, teeth brushed, cologne sprayed on, gloves put on, hand warmer heated up and hat put on. Then I am finding last minute items needed for school like the correct pen and adjusting his legs the way he wants them as well as adjusting his jacket. Something is usually uncomfortable. Sometimes even requiring that I get him back out of his chair to fix. Also, putting his shoes on requires a HUGE amount of patience for both of us. His feet are turned inward due to his disease, and just putting his shoes on him causes a fair amount of pain and his toes usually curl up underneath his foot. :( To make things a bit tougher, all three kids need to be ready for school at almost the exact same time.

When all three kids were finally out the door this morning, I let out a sigh and enjoyed some quiet time. There are days when it's much more appreciated than others and this morning was one of those days!

A trip to see family

Next month, Steve and I will be traveling with my grandparents (both pictured below) to visit family in Chicago, my aunt and uncle (also pictured below) as well as my cousins. My aunt suffers from Alzheimers disease; early onset and has had it for close to 10 years already. She isn't even 60 years old yet. So, symptoms began in her 40's. So hard to believe. But, it's true. At this point, my uncle cares for her full time. She can barely put a sentence together and no longer uses a toilet. Being around her is similar to being around a 1 1/2 year old child. I have known elderly people with the same disease and even they can still form a sentence. I often wonder if the early onset form of the disease is worse than the form that the elderly get. Either way, it's a very sad disease and we all grieve the loss. She really is already gone. Although her body still works....for the most part. I wanted to ask for prayers for a safe trip for my grandparents and us and also that we would all stay healthy so that we can enjoy this trip away. It is VERY rare for Steve and I to plan a trip away during this time of year. Just too risky to plan something during the months that Ryan could get sick. So, we are hoping and praying he stays well so we can make this trip!