Do you ever feel overwhelmed? Do you ever feel like your life is zooming by and you can’t seem to catch it? How about feelings of anxiousness? These feelings consume me at times and I wonder how do we slow down amidst the chaos? How do we learn to find peace, calm our bodies, and just breathe easy? For me it’s all about prayer and focusing on my breath, something I did often yesterday….
I am woken every morning by the cutest little face, my Seeley baby (we cosleep, so he’s always near), at 6:00ish am. We quickly escape out of the bedroom so the hubby can get a few more hours of sleep, as his sick and sluggish body needs it these days. By 9 Scott wakes up feeling even worse than before, which is not good as he has been on IV antibiotics for over two weeks (and just got out of the hospital ten days ago). He tells me the doctors have decided to extend his meds, which guess what? Means we get to drive one hour and forty five minutes to Stanford so Scott can get his port access exchanged and we need to be there by noon. Ugh. Ok, so let’s get ready!
Seeley and I quickly, well as quickly as you can get any toddler to move, get ready. Scott does his breathing treatments, insulin, morning shake and thirty minutes later begins to get ready to leave the house. As I sit and watch him get ready I notice the heaviness in his breath. I notice the wheezing, and I notice his face; purely exhausted and close to tears. How frustrating it must be to feel this way after taking a shower. I can’t imagine what this must feel like, to literally need to rest after an activity I do with ease. This always makes me feel guilty and heartbroken for him. I help him get his clothes and tell him that I don’t think another week of these meds is going to do it. He needs to call them (his CF team at Stanford). We decided to pack an overnight bag for him, just in case they want to admit him. On the long drive over I am praying that he doesn’t have to stay, although I know that’s not going to be the case. Stanford Hotel (that’s what I now call the hospital as Scott has been admitted more times than I can count this year already) here we come! We make it there and sadly we drop him off at the Emergency Department — we tend to not go in with him as there are too many germs in there for Seeley to be exposed to. Hopefully it won’t be a long visit. The house feels ever so lonely without him. Again, the guilt sets in. Before Seeley I would spend weeks in the hospital with him. I was there for every admission in to the hospital, every doctors visit, every ER drop off, that’s not a possibility anymore. This is where life gets difficult for me, where I am torn in two different directions, wife and mama. I don’t think this will ever get easier.
Did I mention that we also had a funeral to go to in the evening? Yep, that’s usually what happens in our lives. So Seeley and I will hang out, eat a picnic lunch, drop by the Oakland Zoo, and then head to Scott’s Great Aunt Theresa’s funeral in San Leandro. A day that Scott has to miss out on, again the guilt. Just breathe through it, right?
Seeley and I on the Gondola ride at the Zoo! I have to remember to be present and enjoy these moments with my sweet little boy.
It was a long day. An exhausting day. A sad day. A day ridden with fear that transplant time is getting closer. But among all those negative feelings were the good ones; happy that I got to spend the day with my little man, feeling blessed that Scott is in such good hands at Stanford, and lucky to spend some time reminiscing with family about a beautiful lady.
I am reminded of a verse,
Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus. 1 Thessalonians 5:18
I am thankful for this beautiful life, even if I don’t understand the why behind everything.