The tapestry of the life of a medically complex family

Archive for the ‘Big Bro’ Category

Visual Space

I had to move a toy there. I took the fire station and moved it to the spot where his dog bed was until this morning. Each time I pass through the study, sobs escape, but having the visual space filled helps…

On May 3, 2002, our pup came home to live with us. 8 weeks old, 11 lbs, a 9th birthday present for my Eldest. Jake was so tiny we had to put boxes into his crate & cover them with a blanket to make the space feel comforting. He fit in immediately, playing & growing alongside his pal.

His first few years there were multiple moves but he was happy to be where his pack was, through every transition. 7 years ago we moved to our current home. He went from being a stay-at-home-alone dog, to a dog with a house full of kids, with nurses & me at home except for hospital overnights.

My oldest finished high school & went to college out of state. His visits brought increased excitement & unending smiles from Jake. After a visit, Jake would run to the kitchen with every next arrival to see if it was his buddy back again.

Jake turned 12 in March. Things were harder. Transport was difficult. He had mostly wonderful days, and some that were frighteningly awful. Until yesterday, bad days coincided with difficult travel, vet visits, an injury. This past week he looked tired. This past week he had less energy. Yesterday he did not eat and was very winded crossing a room.

He held on. He smiled at me every time I pet him. He smiled when I gave him my eldest’s pillow and looked to the back of the house. He was holding on to see his boy.

This morning was the hardest but we were together. Jake rode peacefully in the car- even sat to look out the window smiling. His breathing was ragged but he wagged his tail. He smiled and gazed lovingly at us. And now he’s gone.

He was a wonderful & sweet & happy dog. He provided comfort & comedy & joy to everyone he knew. He snuck his Petco Christmas presents from piles in the closet. He leapt off a 4′ patio edge into my sister’s pool. He was my loyal & ever-present friend for over 12 years. I miss him. I ache. I am thankful for EVERY minute.

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Category:

"the Ugly", Big Bro, LOSS, pet

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.”

Category:

Big Bro, kids, Memories, ROFLcopters

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.

Category:

Big Bro, Family, foster children, kids, Memories, Momma making, Preemie, Special Needs, Trach, Twins

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!

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Category:

Big Bro, kids, Memories, Preemie, Special Needs, Trach, Twins, Uncategorized

“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

Category:

Big Bro, Community, Preemie, Special Needs, Trach, Twins

Riches

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.

Category:

Big Bro, foster children, Judgement, kids, Momma making, Preemie, Special Needs, Trach, Twins