The tapestry of the life of a medically complex family

Archive for the ‘foster children’ Category

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.

Children who wait

Have YOU ever thought about adoption from foster care? It isn’t always easy but I highly recommend it to anyone who is considering adoption. There are challenges with the children, the workers, the process and within our own lives. BUT it is the single most rewarding thing you can do if it is in your heart to become a parent through adoption.

The US Department of Health and Human Services compiles statistics on foster care and foster adoption for every calendar year. Last year’s data indicates that 115,000 children were waiting in foster care to be adopted as of the last day of Fiscal Year 2009  http://www.acf.hhs.gov/programs/cb/stats_research/afcars/trends.htm . Although 57,000 children were adopted during FY 2009, nearly TWICE that many live in a non-permanent placement awaiting placement with their forever Mom and Dad.

Children who grow up in foster care suffer repeated upheaval of their home-base & other significant losses. When these children age out of foster care, even if they are dedicated enough to go to college, rarely have a place to call home for Thanksgiving break or a winter holiday. Is it any wonder that the statistics show that greater than 3/4 of them “fail” in future life challenges- going to prison or dying young? Recently,  former foster children have overtaken war veterans as the single largest population in homeless shelters in the State of California.

If it is in your heart to foster a child, or to pursue adoption through foster care, please go to http://www.adoptuskids.org and click on the link to find information on foster-adoption in your State. “You don’t have to be perfect to be a perfect parent.”

Life Paradox

When I was younger I was given a book by a friend called “Do It Anyway” by Kent Keith. In it he details the Paradoxical Commandments; the first two are as follows:

“People are illogical, unreasonable, and self-centered.
Love them anyway.”

“If you do good, people will accuse you of selfish ulterior motives.
Do good anyway.”

I live my life by many of the principles he described within his book and am reminded almost daily of these first two- today was no exception. I find that no matter how well people purport knowing me, they certainly never seem to get why I have adopted from foster care, and why I care to again. They misunderstand my relationship to my children and cannot fathom why I do what I do.

I love my children. People who regularly read my blog may understand this, but some people do not understand loving a child who was not grown within you. I cannot explain it to those who do not understand; I can only say that I feel the same love & protectiveness for all my children, biological and adopted. I have always known I wanted to mother multiple children and that some of these children would be adopted.

As a mother of children with complex medical needs, there are challenges- daily – but these do not diminish how I feel about my children. They are not the only events in my children’s lives, but they are often what I write about. WHY is that? Because I tend to have more to write about things which challenge, things which are unsettled, things to which I need give more thought. In no way does this mean that all there is in our lives is challenge.  It may be that you read about every challenge we have- and I write only twice or so weekly. So much of my time is spent living and enjoying that I don’t get a chance to write more often.

To get back to where I began, nearly every day we come into contact with someone who represents some part of the first portion of Paradox 1 “People are illogical, unreasonable and self-centered” – sometimes that person is even US!  But we keep on. We continue to reach out, develop friendships, take risk, love. Thankfully it is often worth the effort to us- because the feeling or support is returned. Even when it is not, it is worth the effort, because without the risk, there would be no return.

The second Paradox, describes the way I live every aspect of my life: “If you do good, people will accuse you of selfish ulterior motives. Do good anyway.” It is the paradox of my career path as well as my family life. There will be those who judge whatever I do. People will think I try to gain attention or acclaim, or have some other self-serving motive, but I will continue to “Do good anyway”.

I parent my children because they are my children. The good that I do serves no purpose other than its needing to be done- for my children, for their future, for my own fulfillment. It is my own purpose. Judge away: it will not change me. I will continue to “Do good anyway“.

To read the complete list of Paradoxical Commandments, please go to Dr. Kent M. Keith’s website at:      http://www.paradoxicalcommandments.com/

My Foster Adoption Journey

Growing up I lived in a house with 2 brothers and 2 sisters. We were close in age, shared chores, clothing, treehouses and other adventures. Growing up in this family, we learned to share, debate, laugh, entertain ourselves, ride horses and be responsible for ourselves & others. 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. As I grew I knew I wanted just such a family- a group of kids who played with each other, fought with each other, resolved differences and became friends & support to each other as adults.

My life went partially as planned: I earned degrees, worked, lived, loved and had my first child. I raised him as a single mother and spent some time looking and waiting for that person to share parenting of future children with… I have yet to find him. Eventually I decided that my desire for that larger family, that group of kids to annoy & delight each other (& me), was not dependent on my other goal of adult companionship. As a child, I had watched Wednesday’s Child on Boston television and KNEW, even then, that I would eventually adopt children from foster care to expand my family. It was time.

After completing my home study, moving & then revising it, I connected with a wonderful adoption worker through MA DCF. She helped me submit my information for consideration for some sibling groups available in MA while I continued to look through online photolistings for children who would somehow speak to my heart. I knew what I wanted: a sibling group of at least 2-3 kids, children younger than my son, children I could love & support and, most importantly to me, children who may be considered “difficult to adopt” because of their race, history or developmental needs. I knew my limitations- there is only one of me- and I let my worker know the conditions that seemed too much for my life and situation.

One day in January 2007, I logged in to the MARE website photolisting (http://mareinc.org/MARE-Online-Photolisting.html ) and, tucked at the bottom of the page, among a group of pictures of sibling groups from MA, I found this picture of 2 infants. Clicking on the picture to enlarge it and find out more, I looked closely at their chubby cheeks and saw the tracheostomy tubes nestled under their chins. Having worked in early childhood special education, including one year in an award-winning program with children who are technology dependent- I recognized the tubes under their chins and knew what this meant about their ability to breathe without medical support. I knew what the need for care meant, what the time commitment could be, what the medical follow-up & advocacy needs might be- and I KNEW that I wanted to be the resource for these children. My social worker was surprised by my interest but knew to trust me in choosing to submit only on children that I thought I could provide for. I was matched with them in February and the week after their first birthday, I went to a disclosure meeting and had an opportunity to meet them.

Trachgirl was the shy one, leery of new people, remembering the hospitals, the doctors, the people who come in and out of her life; she a safe distance during our first meeting. She warmed up later in the visit and played peek-a-boo in my arms on their nursery floor. Trachboy, less aware of a reason to be fearful, lay in my arms, looked up into my face and cemented their places in my heart. As he nestled into me, nuzzling my arm and falling asleep, I knew there was no hope of turning away or turning back- I had found my children. We had found each other.

After regular visits, a bunch of training on their daily & emergency medical care and a solo overnight at their foster home, Trachboy & Trachgirl came home to our house where they joined their older brother then 13.  My oldest adjusted well to the twins’ arrival and continues to amaze me with his capacity to accept his brother and sisters as full-fledged members of our family.

When the twins were 17 months old, a younger sister was born and she joined our family the week her big sibs turned 2. I remember the day her social worker parked her car out front and walked my precious new bundle up the stairs. My youngest lay in my arms and the twins touched her face, held her hand, and brought toys to show her. I scheduled a family photo for that afternoon, knowing full-well I might realize quickly that there was NO WAY I was ever going to get out of the house again! The pictures were a big success, all four kids looking intently at the camera, a smile from the teen at how crazy his Mom truly was. For some time, this is the completion of our family. One day there may be others who join, related or not, but for now the craziness feels full, real, rewarding.

It has been a journey, laden with challenges and celebrations, hospitalizations, surgeries and periods of wellness & activity. It has been worth it.  It has proven the greatest and most thrilling adventure of my life. 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. I encourage everyone who can, who has the resources, the energy, the love for children and the desire for a strong family to consider what they may have to offer a child from foster care, who may have no one else.

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.

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.

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