Today has been such a mixtures of emotions.. that is becoming the new normal for us..ups and downs..all about learning to ride the waves. The morning began with a sweet bath for Sam. Sofie helped and Sammy was such a ham cooing about it all. I got started on dressing him while trying to get the girls dressed and fed and lunches made.. same old routine but then he had a brady episode and I was shot back into that shock that I can't seem to get rid of every time it happens.. I get so upset for that split second that I think I will have a heart attack ... then we slip back into the routine and somehow we get comfortable again. I could not think to grab the video camera as I need to do to get it recorded. I never imagined this kind of pattern. I am thankful that God has spread out his episodes so I have the time to take a deep breath and forget a little before another scare. He almost always has self corrected .. back to breathing and so I guess we are starting to feel like this is just what he does.. but it is my fear of him not coming out of it that is way too ever present in my thoughts. Then he was wiped out and slept all morning. I had been weaning him off the caffeine meds..was that related or not to the episode?
Then later we had a big Up.. he amazed me with grabbing a toy with both hands!!! Major rush of adrenaline. I did not put it in his hands or anything. It was a round rattle toy laying by his side and he held it in one hand and the other came over to hold on as well..seems small but is huge to me. I even had the mind to video watching him do it. I am working hard still to get him to laugh out loud and rolling over would just about put me over the edge. We found out he will have his occupational therapy evaluation on tuesday which would focus more on the fine motor skills. I was laughing thinking of a recent day Sofie said "look mom - no hands.." and I was proud to see her not holding on to the raft in the pool.. such a big step! Now here I am jumping for joy over Sam holding something with both hands.
We were blessed with a family visit tonight and Sam got to show off his new talents to the grandparents. But with the visit we found out some really hard news about a loved one that I won't share at this point but that is making my heart hurt tonight... You know who you are -- you are so heavy on my heart and in my thoughts and prayers. I feel though that every person is handed challenges that will seem impossible and scarey but that they will face and with strength grow through it... I believe God does not give us more than we can handle. I just wish we could know the future to see how we get through it while we are in it.
I am praying for a little boy Jensen Byrd (read about him on caring bridge) I have never met but have prayed for over the past 2 years. He is in the last chapter of his fight with neuroblastoma cancer and is only 5 years old. I know his parents must be in a very dark place right now although I know they have enormous faith but I hope God continues to show them his light. This little boy has done more in his 5 years of life than many of us could ever dream of.. he has touched more people, changed more lives and experienced such extreme depth of character. He is such an inspiring angel to his loved ones, his supporters and even strangers like me that I know God already has set aside his wings and a safe place of peace. I am praying for my friend from choir now moved to a rehab facility still frustrated by no diagnosis of her debilitating symptoms but praising that she is getting some therapy she needs. I am praying for my special loved one who is probably riding a storm of emotions today..I wish I could give her calm and an assurance that she is going to be ok. There is a moving song In My Arms by the artist, Plumb that says "Knowing clouds will rage, storms will race in, but you will be safe in my arms..Rains will pour down, waves crash all around, but you will be safe in my arms." This is where I am now.."in His arms" and hopefully we all trust him enough to get us through our storms somehow..