The tapestry of the life of a medically complex family

Archive for September, 2010


We made it! I decided since I have no mid-week nursing anyway, and its pre-flu season rampage, I was going to run screaming into the hills- well, OK, not literally ‘screaming’ since the kids were all sleeping as we crossed into the VT hills– but we DID make the hills. I, insane single mother of 4, with only 3 of the 4 in tow- of the preschool only variety, ages 4-4-3, packed my car with 687 things, gassed it to full, and drove alone to VT.

To be sure, oximeters were attached to toes, nebs had been completed just before departure, lunch had been had and nap time was due… but I headed out into the great beyond on a journey that will place me outside the range of the taunting from my laundry pile! Yes, that IS what it does! Each day I have no nursing to assist with the 500 or so medical tasks that are an inherent part of my day, the laundry mountain taunts me in its booming echo of a voice- adding in an occasional “NA-NA-NA-NA-GOO-GOO” yodel for good measure. And I am TIRED of hearing it. So we have run away- frankly HIGH into the HILLS. I sit here lounging on a couch that isn’t mine, looking at crumbs I will NEVER have to clean from the floor, enjoying the peace  and the cool mountain air as the fearsome threesome drift in dreamland.

Breathing the sigh of contentment: aaaaaaaahhhhh.


My life as a musical: Bedtime

Every family has its corny traditions. My family is no exception. Often we go through each day as though we are on the stage in a musical- singing a wake-up song, one for drinking milk, hand-washing. My all-time favorite melody is the one we sing just before bedtime. If I can figure out the upload, you will soon enjoy it here: 🙂

College Freshman – how did THAT happen??

Saturday I dropped my eldest off at college. I moved him in to one of the smallest shared dorm rooms in history, on the ground floor of the “Geek dorm”. After FINALLY navigating the one way maze that led to the parking lot/unloading area, emptying the truck and moving things to the building went off smoothly. The room has CLEARLY not been updated since the 70’s when they added the lovely faux-woodgrain plastic laminate to the top of the permanently installed dresser. The new paint has splattered all the immovable furniture and sealed the “storage” area doors located ABOVE the closet alcoves – well, yes, 7+ feet in the air… convenience at its best!

My son washed down all the surfaces and began unloading while I moved my car to the longer term parking area. When unloaded the contrast was significant between his roommate’s ironed and hung “dress casual” wardrobe and my son’s sweatshirts hung on hooks off the side of the “medicine mirror” installed above his dresser. 2 pairs shorts, 3 pairs sweatpants, t-shirts and a supply of poptarts & vitamin water- the ESSENTIALS of college dorm life!

Leaving him there, I realized this is the first and ONLY time since Space Camp (2002) that I have left him somewhere that was not his Dad’s for the weekend. It feels strange but good, a reward for his growth and development, an upbringing. I am excited and nervous for him as he begins this part of his journey. I know he is going to be wonderful, I just hope HE knows it and can get through the challenges ahead to achieve the success I know will one day be his.


I have to write again today because this week has been filled with moments to capture, moments to share, yet it has been FULL making it nearly impossible to get everything written down!

On Friday evening, my oldest spent his last night at home before heading to college Saturday. High school has been the usual up-and-down, back-and-forth, yin-yang that you get as a child attempts to reach a level of comfort with moving off on his own. He has always been good with his brother and sisters but this night was an exceptional one.

He had spent much of the day in his room, sleeping after being up late playing on his computer. When he came down, he came immediately into the playroom to hang out with his little sibs. We ordered dinner and moved to the kitchen for our last dinner before college and he sat there and chatted with the wee ones about their day, their favorite activities and the dinner they were eating.

Just after dinner, while I began getting ready to clean things up & ready everyone small for bed, he began answering his sister’s questions about traveling and airplanes. As he began explaining the “science” of flight, I realized I had stopped moving and was captivated by this boy, becoming a man, and channeling the grandfather whose alma mater he would attend as a student in the next week. I watched as he explained complex physics in words that could be understood by 4 year-olds. I obliged when he asked if he could use my computer to show the little ones pictures of the different airplanes he was telling them about. I smiled as he responded to each question generated with respect and enthusiasm- moving to helicopter topics when prompted by his brother. I wanted to record this, to capture this moment, to preserve it for eternity. I settled for leaning on the counter and LIVING and LOVING this moment- capturing it in my heart. ❤


Here I am on my “uber private” blog (LOL) preparing to make a SHOCKING confession:

I LOVE MY PEDIATRICIAN!  Not some respectful professional feeling- LOVE.

Okay. He’s not “mine”, he’s my kids’. And, no, this is no confession of a tawdry affair. I love him in a way that is no threat to his wonderful wife and children… I love him as the single other person on the planet who is involved in caring about my children’s health and well-being on a regular and very involved basis.

I love him. Not creepy, not [too] inappropriate, not in a “lustful” [EWW] way… a bit Oedipal really- but without the drama of the original story.

This man is a man who LISTENS when I talk about my kids, who shows definite concern for their well-being, who strategizes possible medical or other interventions, who calms my fears when they are high, who shares his level-headed view from “outside” the situation while being linked to the kids who are navigating it. He returns my phone calls directly when I have new info. to share or concerns to follow up on. He is smart, well-researched and seasoned enough to know that it is a good idea to let the latest “trend” be tried for a while before adding this or that testing to his patients’ lives. He admits he is not infallible. He has a similar parenting style and told my eldest: “If you were my kid, I would have you write an essay on why vegetables are necessary.” when my son told him he didn’t eat them because they had little nutritional value. He shares my sense of humor, warns me of pitfalls he has experienced himself with an anecdote from parenting his girls. You can see the love he has for his family whenever he talks about them- pictures of them adorn his offices and his waiting area is filled with his proud display of pictures taken by his oldest daughter while they were on safari.

He is very engaged when we come for a visit. Smiling when talking with my kids, amazed at their progress or developmental feats- on whatever their timeline. He KNOWS them. He really knows them and cares about them & their futures. THIS is why I love him – and NO you cannot have his name!