This post started out about the highlights of our week and specifically updates on my recent OB appt (More on that info in a later post). After a busy week with the kids away, I was thankful for the time to do some house projects and share quiet periods alone with Sam. Once the girls returned I was eager to soak up some alone time with each of the them. This is how I came to have an enlightening conversation with Sofia over a picnic on our front porch that left me reeling at how little credit I give her for understanding the deeper dynamics of life. She shared her thoughts on the new baby and on Sammy's special needs and all about how she wants to be the kind of sister I would want her to be to her siblings.. and that she felt very loved. This is the point when my heart swelled and I felt so thankful that God entrusted me with these sweet children.
A week earlier Sofie did a water color painting after school for me and proclaimed that the art was showing how much she loved all of us (meaning our family). During the picnic she was quite candid about all of these feelings. As I watched her chatting away about how her baby doll (who along with Sammy had joined us for the picnic) was learning to eat by mouth the way her brother was doing with the help of his therapy, I felt this overwhelming feeling of peace and thanks that she absorbed things in a healthy way and was not acting out or feeling insecure. I felt so grateful that amidst all the pain and worry and stress of Sammy's condition, not to mention experiences relating to my mom's traumatic health/post cancer journey, we have been so blessed overall to experience a calm period of late. A reprieve. A gift of peace.
It was at this moment when that original blog post got hijacked. I had decided to check in on the blogs of some of the families I follow, some of which are also effected by this horrible disease. It has been a double edged sword making connections online with other families. On the one hand, these remarkable families inspire me to stay hopeful, hang on to my faith in hard times and to realize we are not alone in this journey. They have helped me find humor in some of the absurdities..and with some I feel this incredible link purely because the path we are trying to navigate has already passed under their feet. I can't put into words the magnitude of hearing someone else's view on a particular test or Dr. and then finding it fits your own perception to a T. We share something and yet it is something you would never want to share with anyone.
It is like when I read about a husband and wife who laid in bed one night talking and finally saying the words that had run through their individual minds silently a hundred million times.. that their child's life might be cut short.. that it might be a reality they need to face together. Those moments are something only certain people could read and fully understand. It is in reading those shared thoughts that I feel less alone in all of this. But it is also incredibly hard to find you are praying and feeling for so many sweet families, even though you have never met them in person. Sometimes it feels unbareable to take in all the highs and lows. Each time you check on them there can be wonderful progress or joys from happy experiences or really horrible things going on with their health battle. It makes your own worries about your own child that much more raw.. It is so painful to think about someone's sweet child (maybe some 800 miles away) fighting for their little life. You can find yourself reliving those times you were in their place or you imagine you could just as easily be in their place tomorrow. I have come to know some of these kids and because I relate from similar circumstances, it all hits me so hard. I think about how before Sam arrived on the scene, my image of a suffering child was probably that of a child from a third world country or most likely fighting cancer. But now I know all too well that cancer is far from the only threat to innocent children.
So tonight when I found very concerning updates on little Talon, a baby boy Sam's same age fighting Mito, I stopped my earlier post and took time to pray for this precious fighter and his family. Talon had only recently had his G tube placed and had just gotten over a tough period following an illness. His mom's last post had sounded so good, happy to be home.. and now things are so uncertain and scarey for them. I found myself in tears as I read that he has been in the ICU since Wednesday and is status elipticus (constant seizures) and intubated. Only last week I had a talk with our Dr about how we don't have any emergency suppository meds on hand at home for a longer seizure that could lead to status elipticus. I think our current neurologist fears how that med would interact with his other weaknesses..respiratory etc. We have had so few seizures but what he has had have at times lasted as long as 7 minutes and clusters of up to 45 minutes. It is my worst fear that we not be able to stop one and it take too long for help to arrive. With his other issues, when his heart rate has plummeted and he has stopped breathing and turned cold grey, there was little time to worry about 911.. we had to act immediately and rescue him. I can't imagine watching seizures at a bedside and not be able to stop them or do anything to rescue my baby.
I hurt soo much for this family and all the others we have met. I hate this horrible disease. It is so unfair. It is attacking innocent children and yet.. noone outside our world even knows what it is. We don't even have all the answers on Sam to know if this disease was always going to be in him or if it is a secondary disease process..or what.. too many questions and not enough answers or solutions. I know all too well how powerless this mother feels right now.
I went in to Sam's room and watched him as he slept. I cried and prayed for Talon. Sam was sleeping more peacefully.. more peacefully than the junky breathing he had last night. His ear had blood on it today and I worried about a burst ear drum but I am hopeful it is just a scratched area, however I hope that would not mean he was pulling at it which could point towards yet another ear infection to make things miserable. He has had quite a few recent rounds of antibiotics again and although we have been luckily avoiding a major crash where his gut shuts down and respiratory tanks and we end up in the hospital, I am always aware of how fast those scenerios take place. I worry about every possible taxing issue or illness. So when today was not our best day, I began to worry.. but now I look at Sam and he has been at his strongest over the last few months. I need to give God my worries and just know we are blessed for the good days.
This family just wants to blink and get back to those good days. I pray for that for them. Peace and calm over Talon's sweet body. I pray healing and strength for all suffering children. I pray that their pain and illnesses not be in vain. Lord, please reach people with their strength. Help people to be more thankful of each day and the gifts you give them. Help them to let go of petty concerns. Help them through adversity and guide them to choose to help others. Tonight I am thankful for picnics with my children on beautiful, sunny days. For daughters that are emotionally wise beyond their years. For Samuel's ease of breathing right now. For sweet birthday parties like the ones we attended today.. that remind us how precious it is that we can mark each year and watch our children grow.