The tapestry of the life of a medically complex family

Archive for the ‘Big Bro’ Category

My Youngest Plans for Marriage

My three youngest sit talking at the table.

My son says: “When I’m big, I’m gonna marry Momma.”

I ask him why- what about me makes him want to marry me. He says: “Momma, you’re LOVELY!”

His twin plans to marry the son of one of our former nurses- because the nurse “will be too OLD to marry me when I’m grown up”.

My youngest states: “When I grow up, I’m gonna marry (my biggest brother). I’m gonna grow up … & MARRY HIM!”

When asked why, what is he like that makes you want to marry him?

Her response: “Bacon. He’s bacon.”

Those I Love

It’s been hard to keep up with blog prompts for this month of blogging every day! Today they want to know who I love- well, I’ve already written so much about them I can’t imagine you’d be very surprised. My kids are the most wonderful people to ever happen to me.  :) My oldest  is a terrific emerging adult. He’s back in college and working his way into a routine with it. He still makes me smile whenever he Skypes his younger brother & sisters – chatting with them about nothing, the objects they can see in the room behind him or answering all their young sib questions.

The twins are doing wonderfully well. Health is still an area of challenge but I’m able to keep these loves of mine home with the help of some terrific home nurses. Growth is a slow & lengthy uphill battle, but they are happy & developing. Can’t wait for their sixth birthday in 2 weeks!

My youngest is a love all her own. She is compassionate & caring and my companion on all errand runs. She adds a level of noise and energy to the playroom. I love her laugh and smile. My kids warm my heart every day.

Holiday Tree 2011

The kids are becoming ill. We are creeping up on an anniversary & I will push through but already Youngest has begun to wheeze & have bronchospasms. Fortunately, the twins only have a bit of congestion and the occasional sneeze/cough so far.

Regardless, my oldest was home and we needed to get a tree and get it decorated before he goes to his Dad’s for the holiday.  Enjoy the photos- we even got a full family shot! Happy holidays!

This slideshow requires JavaScript.

“Being” a Family: Our 1st RedSox Game

Some days in our family are completely caught up in the managing of medical care & health-related events. On June 1 2011, we changed the focus completely and journeyed out to enjoy a long-standing family tradition. For generations our family have followed the RedSox and finally the Fearsome Threesome was able to take in their first game at Fenway!

Before the game, we achieved parking magic thanks to some connections with the local police. As we entered the park, I became nostalgic, breathing deeply in the atmosphere of this monumental event for my family. I paused a moment, adjusting the suction bag, oxygen tank and preschooler, and took a second to remember the children who I brought with us in spirit. Being in this place brought them close to me again, renewed my resolve to enjoy whatever part of this event that we were able to attend, and brought tears near the surface at the enormity of this moment.

I am so very thankful my children were well enough to make the trip. I am thankful we had a nurse who could come with us and help out with monitoring the twins’ reaction to the heat. I am thankful to have experienced the RedSox game with all 4 of my children. Sitting there, looking over at the four of them living this experience, I realized that, regardless of future events, they will ALWAYS have this moment together- I will always have this moment. The RedSox were not able to overcome their opponent during this outing, but WE, family of 5 including 2 micro-preemies with trachs and a newly minted adult, overcame some truly remarkable opponents and lived this experience together.

Our family's first RedSox game at Fenway Park


Saturday night I had a conversation with a person I knew in high school. She is reaching out and connecting after a flop of a reunion resulted in a 3-person turn out for appetizers and a beer! She talked with me about her life now, the challenges and wonderful things that have happened for her over the years, along with how amazing her daughter is. She feels that her daughter is kinder, gentler, more compassionate than she herself was growing up. She talked about how her daughter regularly asks her to travel to my facebook page to see updates or photos of my children, how she fields questions about our lives, health and how adoption works or our family came to be. She told me her daughter asked about whether I was rich and she said she explained to her that I was not. I understand that she meant with regard to monetary riches but I believe I am one of the richest women in the world.

Each day I have the privilege of watching the growth and development of my 4 children. I am there to wipe tears, celebrate accomplishments and trouble-shoot oncoming challenges. I do, as people say, “have my hands full” but each day my heart is also brimming. The struggles and challenges we face each day do not go unnoticed by me, but each day my children are well enough to stay at home, to get out of bed, to play, fight and give me a hard time- those experiences enrich my life, make me more aware of my riches than any king or dignitary from any land.

My children have brought me along on their protracted and arduous journey. They have crossed the Himalayas of childhood experience and we live at the base of yet another mountain range, but their existence has enriched my life beyond the measure of all journeys thus far. As a family, we are rich in our support of each other as we address the “richness” of challenges, breathing treatments and medical appointments. While we persist in reducing the richness of hospital visits, emergency room trips and ambulance rides, we thank the universe for providing the richness of being together, learning and growing. As a mother, however uncertain the future, each day I am rich in love, in laughter and in the most valuable of all commodities: time.

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. <3


Get every new post delivered to your Inbox.

Join 65 other followers