Wow! Its been a week since we arrived back from the conference, and I am just now feeling like we are getting back to our “normal” around the house. We had such an amazing time at the FSMA conference and I wanted to let you all know a bit about our trip!
We received a scholarship from The Pennington Foundation to attend this year’s FSMA (Families of Spinal Muscular Atrophy) conference in Washington, D.C. We knew this was such a fantastic opportunity, and we had to take advantage of it. In the weeks leading up to the conference I had feelings of excitement and anticipation, but then just a few days before we were set to leave fear and anxiety overcame me. I think the reality of where we were going and what it meant finally set in. One night, as Beau and I were getting ready for bed, I remember just breaking down and crying to him that I was so afraid to go. I was afraid of what information I would hear or see, afraid to meet new people, afraid of all of it. All of the sudden I didn’t want to go to this conference. I just panicked. I prayed and prayed for God to take away the spirit of fear that overcame me. I prayed that He would guide our path and use this conference to provide us with wisdom and understanding of what He would have us do for our son.
We left on Wednesday afternoon and were set to get in to D.C. around 11:00 pm. Our flight was delayed, as flights often are, and by the time we waited in line at D.C. to get a taxi and arrived to the hotel it was 2 am. We were all exhausted, but thankfully, Steele was a trooper. He just went with the flow. I think he was happy to be on a new adventure.
We slept in late the next morning, and by the time we all got ready it was time to head to the very first event of our day. It was a general meeting for all of the “Newly Diagnosed” families. That is anyone that had received a diagnosis of SMA within the past year. We started at the registration desk were we were immediately greeted by a man that introduced himself and welcomed us to the conference. He told us a little about his son, who was sitting on the counter down the way. He was a bit older than Steele, probably about 8 or 9, but I remember looking at how he was sitting and the way his legs were positioned and thinking, “Wow, he reminds me of Steele”. I remember the man telling us that we were going to love it at the conference, and he said the best part about it was that you find that “you’re not alone”. I didn’t completely understand what that meant at the time, but it would be something I would learn and believe during the rest of our time there. We proceeded down the hall where we dropped Steele off in the children’s program. It was a huge room and the floor was covered in sheets and toys. In the background, a movie was playing on a huge projector. I remember looking at that room and thinking, “Wow! They get it!” You have to understand that I’m that overprotective mom that lays out every little detail for anyone and everyone that I ask to keep Steele. I remember putting him on the floor, looking around at the other kids in the room and I didn’t have a need at all to give the people the 10 minute run down about Steele. I knew I didn’t need to tell them that they had to be careful when they set him down because he might fall over. I knew I didn’t need to tell them that he might not be able to make it all the way across the room to play with a different toy. I just knew that they knew. I just had a peace about it. I am so thankful for the volunteers that gave up their weekend to spend time with our kids in that room.
Then we went to our first meeting. It was a general session that would explain what we could expect from the weekend, introduced us to members of the FSMA board, and briefly educated us on the basics of SMA. They welcomed us to the “family we never expected to be a part of”. It was in this room that any and all fear that was left in me was gone, and instead I just felt comfortable. After the session, we headed to a “meet and greet” with the other families. Within the first 5 minutes of being in the room we were approached by a mom that we had been communicating with via facebook. She was one of the first moms to reach out to us when we received our diagnosis. Although we hadn’t met before, it felt like we had. She was open to any and all questions that we had, and really gave us a lot of good tips and information on what we could do to help Steele. I am telling you these parents deserve a PhD in their kids! They are so full of valuable information about SMA. We talked to a few other people before it was time to go to our first session called Optimal Care. It was broken into classes based on the type of SMA your family member had, and there was also a grief and loss group. That was difficult to see, it became very “real” at that moment. That this diagnosis takes so much from these kids, these families. We gathered what seemed to be a wealth of information in that hour and a half meeting and at that point I had this overwhelming feeling of thankfulness to be there. I was so glad that we pushed through and came to this conference. I knew then that we were exactly where we were supposed to be.
After that meeting it was time to get Steele and head to the “family fun fest” where they would have a carnival-type set up complete with games, prizes, toys, and food. This was another time in the conference that I just felt welcomed with open arms. One of the first things you notice when you walk in…wheelchairs! There were so many people, of all ages and sizes in wheelchairs or strollers. Some of the kids were pushed around with medical equipment, some had manual chairs, many had power chairs, and everyone was just having a good time. The researchers and doctors were also present at the fun fest, and participated in a wheelchair race against the kids. I will say that those kids knocked the socks off those researchers! The kids had a blast (and I think the researchers did too). Steele traveled around to the game area after a while, and of course, chose only to play the games where he could throw something at something else. So, not only was he able to throw things (way up there on his preference list) but he earned prizes to do it. Win-Win. To say he had a blast is an understatement.
The next day was day 1 of the general conference with all of the families. The day was broken up into general sessions and workshops. There were about 36 different workshops offered over the next two days! We were able to pick and choose which sessions we wanted to attend. Beau and I took on the “divide and conquer” mentality and attended separate workshops to get twice the amount of information. I am really glad we did. We were able to get information about type II in general, therapy ideas, nutrition for type II, information about breathing, toy adaptation, and Steele and I even attended an aquatic physical therapy class while Beau was in a “dads only” class. What we learned is that there is so much we could be doing to help Steele now that we haven’t been because we just weren’t aware! Knowledge is power! We took notes like crazy and knew we would have our work cut out for us when we got home.
That night, we had a research poster session followed by a dance party! The research poster session was fantastic because it put us face to face with the people that are working like crazy to find a cure for SMA. They informed us that it takes about 10,000 ideas to get ONE drug to go through each of the steps necessary to gain FDA approval. The researchers are SO CLOSE with TWO different drugs right now that seem to be beneficial to people with SMA!! It would be so amazing to have a cure for this disorder.
Now stick with me on this part, because it might sound a little silly. We went to the dance party after the poster session, and if I’m totally honest that was my emotional breakdown. I couldn’t believe that I had sat through the workshops and learned what I did about SMA and didn’t shed a tear, but here we are at this dance party and I am crying in the middle of the dance floor! I know that it was tears of joy to see all the happy faces of not just my own child but every child in the room. I really felt that feeling of family. I had a connection to those parents. I had a connection to those kids. There was just joy and love in that room. It overwhelmed me. So what did I do? I kept on dancing. Dancing and crying. Dancing and smiling. Dancing and laughing. With my husband, my son, and my new family.
The next day was more sessions. More information. I remember laughing with Beau saying, “Did you ever think you would be so excited to sit in a room and listen to a presentation?” We just craved the next meeting, and the next.
Our last night was pj and movie night. They provided snacks and again sheets and pillows to be spread out over the floor. They played one of Steele’s favorite movies, Monsters University, and he was so excited! We all sat on the floor, the kids and parents, and while the kids got to snack and watch the movie the parents got to chat. I just can’t explain the feeling of being around others who just understood and were going through the same things we were. And those words came ringing in my head, “you’re not alone”. Please understand that I know God is always with me, and I am never alone, and God is MORE than enough for me. It was just a bonus for me to have connections with these families that were experiencing life in a way that was so similar to mine.
So we are home now, and like I said before we have our work cut out for us. We learned about some medical equipment that could help Steele when it comes to breathing and sickness. As many of you know, he has been battling sickness pretty consistently lately. And when he gets sick its not your run-of-the-mill cold. It is EXTREMELY difficult on his body and strength. It basically has been knocking him down. It can be hard for him to clear secretions and because of that hard to breathe so he fights hard. There is a machine called a cough assist which could basically help him to cough and get the junk out. Then, there is a Vest that he can wear that will shake the junk loose in his lungs. So, our first project is to get a hold of those pieces of medical equipment.
We also found out several new ideas for therapy, and learned that we need to drastically increase the amount of time per day that Steele bears weight. This is beneficial to his bones, spine and hips. At this point Steele is only able to bear weight with physical assistance from someone else. Trying to entertain an almost two year old, while helping to physically hold his body up, while competing with his desire to just sit because its easier is not an easy task. Thankfully, I know a bit about behavior and what motivates him so I have that to my advantage. I am up for the challenge! Eventually, we would love to try to get a piece of equipment called a stander that would hold him in a standing position allowing him to bear weight so that I could have my hands to play and entertain instead of helping to hold him up.
Along with that we are exploring some diet options for Steele. Nutrition for SMA can be a bit tricky because its an area that just hasn’t been studied as well. You would think that since his body lacks the ability to produce protein to build muscles that you could just feed him a bunch of meat to make up the difference. This is not the case. Too much protein can actually be harmful to his body. So now our goal is to find what works best for his body.
I will say as much as we enjoyed the conference there were some aspects of it that were just flat out difficult. I learned and saw many things at the conference that just made my heart ache for Steele. I don’t want to watch his body lose to this diagnosis over time. We won’t just sit back and let it happen without a fight. So, I’m asking for prayer. Please pray that God would continue to work in our lives and provide us with the guidance and wisdom to make choices that would honor Him. Please pray for my strength as I continue to work as often as possible with Steele to maintain and improve his strength. Please pray that we would not grow weary. Please pray for the researchers and doctors and their families as they work to find a cure. And please continue to pray for healing over Steele’s body.
Thank you all, so much, for EVERYTHING you are doing for our family.
Here are some pictures from our trip :)
Family Picture on the Airplane
Arriving on Day 1 of the Conference
Family Fun Fest!!
Taking a lunch break between sessions
View of the hotel from the elevator
Steele LOVED riding the elevator
Enjoying the Dance Party!!!
Headed to the PJ and Movie Night
Father's Day Picture
OUT!! Sleeping on mommy and daddy on the plane ride home.