The tapestry of the life of a medically complex family

Archive for the ‘kids’ Category

The silent work of children

Today has an interesting twist. About an hour ago my twins began to huddle close and whisper to each other about their play. As Keva joined them, she sat nearby & set to “work” adding her soft whisper to the group. Much of what they are playing is silent, and individual, with occasional sounds of plastic on wood or metal toy pans. An unusual & intriguing moment of childhood.

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A Quiet Week

This week is a “quiet week” – 4 days no nursing & only 2 doctor appointments, 1 for each twin. O sure, the doctor appts we are going to are genetics (results) and an ECHO with cardiology follow-up, but it’s only 2 trips in- and one of them I will have a nurse.

Maybe its just that the next 46 hours are covered with nursing. Maybe it’s that place of denial where a parent needs to live to get through the stress of waiting for testing to see if your 5 year old is suffering from pulmonary hypertension… Maybe. But this is my quiet week.

Amazing Songs

My kids really love the chorus to Bruno Mars’ song “Just the Way You Are”. They sing it in the tub, to each other & to random important individuals in their lives- including our pediatrician. The wording & tune may be a bit off but the sentiment melts your heart when one of their beautiful voices directs it at you.

On the way home from some doctor appointments on Friday, my youngest opens up in song, singing: “… cuz my bwuddah is amazing, just the way he iiiis…” at the top of her 3y.o. lungs.

To which my 5y.o. daughter, Adrien, replies: “Really? Really, Keva?? I don’t think so.” ( in a PERFECT imitation of my disdain when she does something out of bounds…)

Keva then begins a rendition to her sister, singing: “cuz Adrien’s amazing just the way she is…”

And Adrien replies during her song: “Now that’s more like it. That’s appropriate.” ( to incredulous jaw-drops from both the nurse & I…)
Then she adds: “Singing to your ‘bladder’ is not appropriate. Sing that to people.”

<swerving in traffic as we roll with laughter>

Cool!

The evaporative cooling vests turned out to be amazing. “Activated” with some cool water, they kept Tav & Adrien cool enough to ride their balance bikes on the bike path for 20 minutes before resting- in 85 degree F heat. SO happy we have a tool to help with this. The fearsome 3some had a GREAT time.

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Celebrating Motherhood 2011

The role of ‘Mother’ needs to be better valued in our society.  Moms: Biological, Foster, Adoptive, Step… I feel like the roles of these women are best defined as ONE woman: MOTHER. Throughout my life as a Mom, I have held most of these roles. As of this week, I am Mom to an ADULT child- wow, a world changing event to me: SUCCESS.

I guess I don’t define “Mom” via legal or physical definitions. I define Mom by emotional definition. Mom is a woman who loves a child & cares for a child – to the best of their ability. It is their work to promote the success of that child in his/her future. People Mom kids in their neighborhoods, classrooms, or homes. It is a role, not a legal position. You don’t become a mother via biology- giving birth does not make you one, as not having given birth doesn’t exclude you. You become “Mother” by what you feel about and do for a child.

Happy Mother’s Day to those who “Mom”. You are appreciated.

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/