If you were my neighbor, you might see my weed-filled yard & think a lazy person lives here.
You would have no idea that I spend each day from 6:30am until 1am the next day doing medical assessments, treatments & caring for my children and home behind the windows you cannot see through.
If you were my neighbor, you might think I dislike outside time for my kids.
You would have no idea the number of treatments necessary to keep my kids stable requires a lot of time indoors. You would have no idea that my kids cannot tolerate temperatures over 70 degrees or have allergic reactions to tree pollen with direct access to their lungs through their trachs.
If you were my neighbor, you might think I yell too often at my kids.
You would not remember that most often you hear NOTHING from our house because we are singing, dancing, playing, reading, loving each other in our own quiet way behind closed doors.
If you were my neighbor, you might think I didn’t like other people and that something is wrong with a home that is always closed up tight.
You have no idea the temperature sensitivity that requires the balance only AC & low heat can provide. You wouldn’t know the smoke wafting from the neighbor’s constant firepit burning that brings the lovely smell into your home day & night, comes with smoke that can harm my kids’ lungs.
If you were my neighbor you might think I have a wild social/ sex life with different men coming in at late hours several nights/ week.
I’ll admit, one guy was gorgeous and I’d greet him with “Thank you” and immediately head to bed after he arrived… But he was a nurse. He watched my kids while I got to sleep outside the room of beeps & compressors & breathing treatments & tube-feeding 2-3x/week. You may notice, he has left us- taken another job with less pay, but benefits he needs for he & his family.
If you were my neighbor you might think I lie around all day because you see the nurse who comes as a “luxury” that allows me “insurance-paid” time off.
My kids require medical intervention or clinical assessment 168 hours/week. I currently have 29 hours of nursing a week. Hardly time to get caught up on laundry & vacuuming or grocery shopping with the doctor appointments weekly.
If you are our neighbor, or a specialist whom we see to help us navigate health challenges, you might think our life is limited or lacks joy.
And there you could not be more wrong. Each morning we awaken thankful to count us all alive; happy to have another day to be with each other. We sing our good mornings and our good nights. We face the medical challenges as an aside to our living with joy in each accomplishment. Each day I look with wonder at my children- at all they have overcome, at the fights they still wage, at the strength they display. I celebrate the 3/4Lpm of oxygen versus the 1L. I celebrate my ex-27 week, 800g preemie as she pulls a book from the shelf and reads aloud to her brother & sister. I appreciate the giggles, the smiles, the sibling quarrels. We live a happy & joyous life- even as we battle.