So I'm sitting here tonight recording my baby as she sleeps to try to capture possible seizure activity. Her EEG from last week didn't show seizures, but I am still worried. Because this is our life now.
I ran a 5K the other weekend. Woohoo, my first one! Before we left for the race, I had to pack up the kids and get them to each of their destinations. For Waverly that meant also packing up her monitor, feeding pump, tubing, etc. I wondered if I was the only one there who had to clean a g-tube before I left for the race. Because this is our life now.
I want to take my baby everywhere and have people look at her and wonder why she's got a bag hanging with milk in it and tell them all about her. I want people to ask to hold her, and to let them, because she is so special. I am so proud of her. And of us. Because of our life now.
I want to hide away in my house because I am terrified of any sneezing or coughing or germs that we may come in contact with. I want us all to walk around in a sanitation bubble so that we don't spread germs to our baby. Because I am terrified of what may happen if she gets sick. Because this is our life now.
I want to sleep without having my ears always on, without waiting for a cry or cough or jerky movement. Because even though she sleeps pretty well most nights, I can't. And even though I am sleeping a decent number of hours at night, I am still tired most days. Because this is our life now.
I want to thank every person I know (and there are more that I don't know that deserve thanks too), because we have been so blessed by the love and care of so many. I am scared that they just don't realize how very thankful we are for them. I don't know how we would have survived these past several months without them. Because this is our life now.
I feel like I am constantly on the go. But then I feel guilty when I'm not, because there is always something to be done. An appointment to go to, medicines to pick up, big kids to take places, grocery shopping to do, house to clean, meals to prepare, laundry to do. Even though it's not much different than most people's lives with several kids, it is tiring. Because this is our (and many other people's) life now.
Just some thoughts from tonight. Not complaining, just a glimpse into my thoughts. We are so blessed. Because this is our life now.
Thank you for sharing. We love you all!
ReplyDeleteWell I am just sitting here as a blubbering mess reading this. Thank you so much for sharing because this is how I feel too as is so many other special needs families. What an amazing Mom you are! I am so glad we have each other through our journeys with our special angels!
ReplyDeleteJulia
I hope you see a glimpse of the glory that shines from your life, Cristen. I don't know you that well, but I'm familiar with suffering, and what a shining light a Sufferer is to the world. My prayer for those who suffer is...that God would allow them to see a little of the gold that is being formed in them while they are in the middle of the fire. It will take your breath away. "This is your life now...." and it is glorious to behold. Christ. Is being formed in you. I look forward to getting to know you better in Heaven. And your 3 children.
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