Our family recently returned from a long weekend in Orlando at the Family Cafe, a summit for Florida's disabled community. We were sponsored in part by Sam's Early Steps (early intervention therapy) organization. Although I have never seen so many wheelchairs and working dogs, the word "disabled" just doesn't describe this group at all. The individuals I met were in fact quite "capable" at not letting their challenges stop them in their tracks. There were singing groups and interesting speakers who informed us on important topics. Advanced technologies and sign language were allowing many to better communicate. There were parents seeking out educational remedies and equal access, behavioral therapies and special diets. There were quadriplegics enjoying the resort's lazy river. You can't help but feel inspired when you witness the efforts and attitudes of these individuals.
We met so many diverse adults and children alike and although they all had medical or physical or cognitively limiting conditions, the condition I spotted first and foremost was that of their serving and caring hearts. Never have I witnessed more people offering assistance to one another! Such compassion, patience and freely offered courtesy surrounded us. Understanding eyes and open arms at every turn.
This morning as my pastor talked about the importance of service, I reflected on how simply these families made simple gestures and respected each other with their service. God was there, amongst that special community, as they looked for the answers on how to live life best despite the challenges... helping eachother up the hill. I imagine that someone had already touched their lives, shown them christian love and support. Perhaps it is just that it is easier to see when you have been broken. I certainly stopped and looked at life differently over the last few years and I am left humbled and thankful. I will never be able to fully thank those that have stopped and shown my family and I compassion with their support and prayers. We don't know the challenges that Samuel may face ahead, but I am quite certain that his heart and ours will forever be changed by the kindness we have been shown.
It was a Happy Father's Day weekend overall!
As for an update on Samuel, we somehow got through the trip with only one particularly rough day. The drive went ok considering how long it was and how many of us were crammed in our van. We had the nurse and her daughter along as well. This pic is of the 6 passengers in the back while Jason and I were in the front... cozy! A bit like National Lampoon's Family Vacation. If I heard, "Are we there yet?" from Bella one more time I was going to lose my mind!
That night, however, Sam took a downturn in his physical abilities as I watched him walking into walls and falling more often. Then came the onset of intense gut pain. We were blessed to have the nurse along with us for the trip but she only worked certain shifts so during that particular evening we were on our own. Our mistake was in placing the pain meds in the nurse's room who had already retired. It made for a long night, considering that we also had the 3 other kids in our room with the 2 cribs. After stopping his pump, Sam eventually found some rest and awoke the next morning seemingly stronger. By noon the next day, however, he was retracting with his breathing and experienced a low brady and some sat drops. He was having low respirations as well. This meant the nurse had to keep him in the room resting while we were at the conference. It is a little scary getting texts that your child is having episodes all the way up in a high rise hotel room while you are attending seminars. This was a large resort and it was packed with disabled attendees so there were more than a few ambulances showing up while we were there. Needless to say, I was on edge.
As the girls enjoyed the hand's on crafts and activity functions planned for their age group, I couldn't help but feel sadness at Sam missing the fun.
Sam did seem to rebound later so we had a nice dinner out at the T Rex Dinosaur restaurant in Downtown Disney. He loved the roaring and stomping sounds as well as the prehistoric decor that engulfs you. We ate in the ice cave and this room spooked me and Max a bit, but the girls really loved it!
We couldn't go to Disney while in Orlando because the season passes my husband and the girls have from last summer are blacked out during certain weeks and this happened to be one such week. Sam probably would not have been able to handle the heat of attending the parks this time of year anyways, but I had thought an hour or two might be fun for him in the evening hours... maybe next time. Instead we spent some shorter periods down by the resort pool, which he thoroughly loved.
There is always this nagging worry that heat or over stimulation is going to put him over the edge or lead to a metabolic crash. I know I should feel more secure as this has been a far better year overall than last, but this is such an ugly disease and fear of the unknown seems ever present. I make every effort to focus on the positive and good things happening everyday, but it is hard when our boy is always so tired and the slightest stress can lead to big trouble.
This week has been particularly hard as another sweet child gained their wings and left this world after bravely fighting Mitochondrial Disease for 5 years. My prayers are with Mylee Grace's family. Though I have never met them personally, by following their story online I shared in their ups and downs and could relate with their pain. No parent should go through this kind of pain. I hope they find peace in their faith. My prayers are also going to the family of Wyatt who is facing the end of his battle with this horrible disease. Their sweet family needs to be lifted up in prayer as they go through this very difficult time. I can't even imagine how they are coping. I can only pray God embraces them and carries them through.
My other prayer requests are for some friends who have experienced an unexpected stress in their path. I know they will persevere through this challenge and will look to their faith and love as a family to pull them through it. Whenever I have felt completely finished and that life has gotten the best of me, I find peace that things will look differently if I can just hang in there. Another prayer I am lifting up is for the mother of 4 kids I babysat for as a teenager. I always envyed her for juggling 4 boys and now I know she is probably feeling like her biggest effort is yet ahead of her as I am told they have just found out she has a brain tumor. I can only imagine how scared and overwhelmed they are at this news. I am praying for the wisdom for her care team to make the best plan and for strength for this family. I hope I can help them in some way.