The tapestry of the life of a medically complex family

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5 Happy Birthdays

Micro-twinsAt 6 months old, my twins just topped out the “glove box”

A Map of Me

So, I mostly write here about my kids- since they dominate the essence of the tapestry of my life. They dictate the events, the timelines, the tonal qualities of the day-to-day. Today is a fairly good day. After the 7 scheduled AM nebs we are headed into only the first saline neb and it’s nearly 12:30p – great sign that the inhaled antibiotics are working! There I go AGAIN!

Anyway, I grew up with 4 sisters and brothers in a “typical” Irish-American New England household. My 2 sisters and 2 brothers all fall into the grouping I would refer to as “my age”- there being just under 7 years between my older sister and youngest brother. I shared a room with my younger sister and, although we had very different interests as we got older, we have been very close throughout life- until the adoption of my children… but that’s another post!

I was second in line by age but really took the “eldest” role- being only 18 months younger than my older sister and pacing her developmentally. We were kids who spent every day outside, played Little League baseball, and took care of a mini-farm full of animals including: horses, pigs, chickens, dogs, cats and sometimes sheep or steer.  We had a garden that my Mom took primary care of and used it as our snack cabinet for carrots and other veggies much of our summer.

Our home sat on 7 acres, behind other street-side houses, hidden from the road by trees and the barn. It was about 1/5 mile uphill on our driveway from the road and the driveway was paved a few months after we moved in. That driveway was a serious source of amusement and adventure- cruising down it on bikes, rollerskating on the back parking area, shoveling it before my parents bought a small tractor with snow blower & plow capacities. I remember the many times we went to school with matching skinned elbows to the person we rode down to the first turn in the Radio Flyer wagon, risking life & limb!

Growing up in this family, we learned to share, debate, laugh, entertain ourselves, ride horses and be responsible for ourselves & others; animal feeding, bedding and watering were our chores from an early age. We were encouraged to do well in school. Conversations about college were based on the “where you would go” tenet, not “if”. Each of us was encouraged to work to our potential and succeed at the career we chose for ourselves. Our parents may not have agreed with every chosen path, but they provided the guidance and support to get us where we wanted to go.

It wasn’t “perfect”- lest you feel I came from some idyllic upbringing. My father was a “red-headed Irishman” and we often determined winners at our table by the person who yelled the loudest! It was the 70s, when spanking was an expected and accepted form of discipline- a message we very clearly understood. We fought with each other, ruined each other’s toys or belongings, but worked it out- SUCH an important skill to bring to adulthood.

My 2 sisters were dancers and singers, my 2 brothers were adventurers, farmers and tree-house builders. There were several different tree forts we built together and played in along with neighborhood kids. My favorite outdoor adventures centered around play on this groping of large rocks that we called “the mountains” when we were kids. One rock was probably about 4′ high by 10′ long, with a hollow indentation at one end- we called this one “Moby Dick”. The other grouping was much larger, with 6-8′ facades we climbed, scaled or slid down, picking our snacks from the blueberry bushes that grew atop them. Looking back, the good far out-weighed the challenges or turmoil. We have grown into a close-knit group of adults, with frequent family contact and regular family get-togethers.

These good memories are probably what has led me to adopt a sibling group out of foster care. I have always wanted to adopt. I remember seeing Wednesday’s Child on the Boston news each week and thinking these children needed and deserved a home. I knew young that my family would include children adopted from the US Foster Care system. I had no idea these children would have the current cluster of needs and strengths that I deal with on a daily basis, I only knew that my house would be filled with children and I would parent them to the best of my ability.

Before I expanded my family through adoption, I completed education and special education degrees. I worked for private agencies, public schools, research projects and with state education departments, designing and providing training and technical assistance. I supported families, school teams and service providers in their quest to provide better services for children along the autism spectrum. It became my career, my true love. But still I wished for more children, brothers and sisters for my eldest to have in his life into late adult-hood, after I pass through crotchety old womanhood into the next place. When I left a research position as they re-structured their grant, I decided it was time.

When my children joined my family, they brought with them challenges, trials, but also strengths. It has been a struggle at times to provide the balance needed to keep my eldest supported in his changing needs, while managing the needs of many wee ones.  It has been worth it. I hope that my children will have the opportunity to learn the many lessons I was taught living in a large family. I wish them all the success, friendship, strength and happiness that I have had the fortune to have experienced. Life as a family continues to be a challenge but I hope their hindsight provides them a view of the same map my parents gave me- Thanks, Mom & Dad!

Goodbye 2010

The closing of another year

bring no remorse & shed no tear

A hard year for some friends we’ve lost

in our hearts their lives embossed

A good year for the friends we’ve made;

for out of hospitals we’ve stayed

A high school grad resides with here

relaxing on his own “gap year”

Two four year olds, improving health,

learning, growth, affection wealth

The three year old makes gains as well

thriving, smiling, Momma’s  belle

In our hearts some pain and joy,

to our future: come peace buoy

As 2010 it’s hold release

Wish you joy, health, love & peace!

Wishing a safe, healthy and happy 2011 for you and your family!

OUR 12 days of Christmas

On the first day of Christmas the Universe gave to me

A respiratory virus for three.

On the second day of Christmas the Universe gave to me

2 trachees sneezing

And a respiratory virus for three.

On the third day of Christmas the Universe gave to me

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the fourth day of Christmas the Universe gave to me

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the fifth day of Christmas the Universe gave to me

5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the sixth day of Christmas the Universe gave to me

6 dirty neb kits                 (before breakfast)

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the seventh day of Christmas the Universe gave to me

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the eighth day of Christmas the Universe gave to me

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the ninth day of Christmas the Universe gave to me

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the tenth day of Christmas the Universe gave to me

10 unreturned phone calls   (yes, all to doctors)

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the eleventh day of Christmas the Universe gave to me

11 missing supplies

10 unreturned phone calls

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

On the twelfth day of Christmas the Universe gave to me

12 hours oxygen

11 missing supplies

10 unreturned phone calls

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

BUT: at least we’re still at home!

Rumson

This morning, during that time of morning when you are nearly awake but not quite, I dreamt of visiting my grandparents’ home in New Jersey. When I realized where I was, I was standing in front of the bungalow with my kids in a wagon behind me. An older man was standing on the porch and talking to me and I told him that his home had been my Nana & Poppop’s when I was a child. He invited me in and I showed the kids the living room which was decorated for Christmas.

Part way into the living room, the scene changed. Suddenly the living room had my grandfather’s organ sitting on the south wall where it had always stood. The kitchen table was visible through the open kitchen door and upon it was the glass “spooner” that my Nana used to store her teaspoons. There were metal kid cups and bumpy amber glass ones for adults sitting on the table waiting for us.

I could hear a piano being played in the basement- meaning my Poppop was downstairs playing to entertain us- but we went out the back door so I could show the kids the tree in the center of the driveway, with its twisted trunk and lined bark. The driveway was still the same black gravel, with the narrow strip of yard on one side partially taken up by the laundry lines which were drying the day’s sheets. The yard was edged in a high, tight-planted hedgerow, a natural fence of sorts, high on the lawn-side next to the picnic table and low on the drive side, along the Rogers’ back lawn.

The rest of the dream was snippets of memories throughout the yard and house: a birthday party in the backyard, a circular swing hung from the twisted tree, a parade around the block dressed in clown costumes & house-dresses with bright red lipstick mouths. Indoors again was the same tour: Nana & her sisters and my Mom & aunt sitting at the table talking as they got dinner ready, Poppop sitting next to me and playing the organ, 5 glee-filled kids sitting on the stairs behind the door to upstairs WAITING to be let into the living room to see what had been brought by Santa.

I loved that house growing up. The neighborhood was flat and the tree-lined street was home to many families with children near our age. I remember playing some game where you throw an object into the air, calling out a name, and everyone but that person runs from the object. The person called catches the ball or bean bag, then yells “stop” and tries to throw it and hit one of the other players to make them “out”. Although I can’t remember the name of the game, I can remember the smell of the neighborhood, the squirrels running back and forth on the telephone wires that lined the road, and that we played that game in the street until long after dusk when we would transition to catching fireflies before being called in to sleep.

The strongest feelings I experienced while dreaming about Rumson were those of safety and security. It was a warm and comfortable place, filled with happy memories and people I have loved. I haven’t dreamt like that in such a long time. I wonder where I may travel another time I am blessed with sleep…

Reconstruction with Rib Graft, Part 4

The events of the NG experiment weighed heavily on me the next day. When I spoke with the fellow, he agreed that starting slow “listening to the Momma” might have been a better idea. He told me we could try it again and run it slower or have her stick it out for 2 more days until she could try to pass a swallow the day after the stent was out. I opted to wait. She had already made it nearly a week, 2 more days would not be much longer.

By this time Trachboy had begun to feel better and was playing more actively in his crib. He was taking all fluids through his GTube or by mouth so he no longer had an IV. Sometimes I would place them together in Trachgirl’s crib so they could snuggle together or play with small toys. Fortunately we got through the next few days without incident. Trachgirl’s follow-up x-rays did not show progressive pneumonia from the aspiration and she handled the removal of the stent well.

Her swallow study the next day cleared her for nectar thick liquids and she happily took her first bottle in over a week while in my arms. Things were definitely looking up. The hospital scheduled us to leave the next day and visitors from the Dept. of Social Services & our Community Medical Alliance team spent part of the afternoon with the kids and I. It was during this visit that we learned there was a new baby and tried to wrap our head around what that might mean to us as a family.

When we headed home, Trachboy went in the car with a nurse and Nana while Trachgirl & I rode medical transport to ensure a safe trip. The joy and ear-to-ear smiles on our arrival back to the home playroom were priceless.

Within a couple days I returned to the hospital for Trachboy’s next follow-up bronk. The docs were thrilled that the repair had held. He did not require any dilation of the area in any follow-up bronk post-op.

Trachgirl was another story altogether. The ENT fellow had explained to me that the usual course post-op was that things look amazing on bronk #1, then bronk#2 is usually when they scratch their head and wonder why they put in all the effort. This was the case for Trachgirl whose airway had swollen back to the narrow pinhole she had had pre-op. With balloon dilation, they were able to open up her airway to a better size and she returned weekly for another month to continue the process of opening the subglottis. The appointments were then spread out to every two weeks and dilation continued until about 2.5 months later when they determined they had gotten the result they were going to get with her.

Several months later, my house became a home of sounds and giggles, words and some phrases. By just before their second birthday, both twins had found their voice and begun to use phrases with their signs to communicate. Since that time, communication has been mostly by voice- quieter than most young children their age, but quite a miraculous blessing considering their start.