The tapestry of the life of a medically complex family

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/

Spring Egg Hunt

Dressed for the quest:

 And they’re OFF!

Taking a basket for a spin

Happy Spring!

Names

As friends have had babies, or gotten pregnant and are expecting, the topic of naming comes up. I find it fascinating the way people name their children- selecting for sound, flow, family history or meaning… People name their children for times of day, times of year, the weather of the day- all sorts of things go into naming kids across my friends & family.

My children all bear names to honor family members who have come before them. My eldest, Liam, is named for my mother’s father William. He was an engineer and a lover of music. My most fond memories are sitting next to him on the bench of his electric organ while he played complex melodies for all of us gathered in my grandparents’ living room. I remember the smells, the warmth… All of that went into naming ‘Liam’ as well as the meaning of the name, a good meaning for an eldest: ‘protector’. His middle name was chosen from a novel in which the hero’s name was ‘Conor’, meaning ‘lover of hounds’, and dogs are his favorite animal so it seems a great choice there too.

My children who have joined my family through adoption have names that bear meaning, as well as honor both their adoptive & birth families. My twins have names that share initials with my parents, ARK for my mother and TJK for my father. ‘Adrien’ arrived with the same first name, meaning ‘dark hair, dark eyes’ in Irish naming. I left her birth name with her and gave her ‘Rosa’ as a middle name to serve as a reminder of a strong African American female, Rosa Parks, who did not allow discrimination and unreasonable limitations define her life. This is a way of life I hope my daughter will be strong enough to emulate. ‘Tavish’ means Thomas, which was my Dad’s name, and ‘twin’ is its definition. ‘Joseph’ was part of his birth name and means ‘god will increase’ so I left it in his name to symbolize my hope for his unknown future. It seems he has risen to the name- being far more capable now than was anticipated at his arrival. I wanted their names to cement their relationship with my family as well as honor their heritage and beginnings.

When Keva was arriving, it was harder to come to a name. She was a beautiful baby and I worked hard to come up with a fitting name. ‘Keva’ is a variation of the Irish ‘Caoimhe’ [same pronunciation], meaning ‘beautiful’. Her middle name she shares with her biological great-grandmother, ‘Catherine’ [pure]. Her great-grandmother has adopted her oldest sisters and raises them nearby. We see them regularly. This woman is raising her third generation of family after raising the kids’ biol. mo., aunts & uncles when their mother died. She too is a strong and healthy role model for her great-grandchildren.

As I anticipate another arrival, I think of names which align with these above. I am working on names that share initials of my father’s sister, or my own sister. Naming will be either initials EPK or JAK. Names with positive messages and meaning are needed, to support this new one as she struggles to thrive here with her siblings in the future. OK all: you have your assignment. First name, middle name combinations, initials either ‘E.P.’ or ‘J.A.’  Thanks for your contributions- & kind words of support!

Silence

It’s a memory long gone, distant, nearly a “wives’ tale” in my history. Each day, multiple times, I run small compressors that nebulize medications into particles small enough to inhale. All night long I listen to the hiss and rumble of compressors as they neb water into mist to moisturize the air my twins breathe through their trachs. Alarms sound when heart rates plummet or rise and when oxygen saturation levels drop below a minimum acceptable level….

Throughout the day, when the heat is not running and I am standing far from the fridge, I remember the sounds of the world without motors running in the background. It is those times I hear clearly the laughter, the songs, the joy. The times my children add their voice to the cacophony, it endears all those other sounds to me; the harsh tones which allow my children to breathe & craft their own noise.

Decline

Decline is a word I hate to use to describe any health behavior in my children. It is a terrifying word implying “active change for the worse”. It is the word I am now using to describe my son’s respiratory status- and I want a different word, a different experience. I am DONE with “decline”- I will settle for “plateau”… can anyone give me a “plateau”?

Since last summer, Tavi has gone from being mostly clear, rarely suctioned, rarely secretions thickening in the trach to a kid who needs suction almost daily and does worse with any level of activity- even when cool. He regularly needs saline nebs every 2 hours when off his trach mist color- and sometimes needs them in addition to the mist. He has declined throughout the winter to having more secretions outside the typical activities where I saw them previously. Outdoor temps have not even begun to rise and he fatigues regularly during low intensity Physical Therapy sessions in the cool playroom.

Since September, Tavi has required a saline neb during each PT session. Since early February he has required oxygen- typically 2L every night, but sometimes as much as 4L. For 4yrs 11mos of life with a trach, Tavish required no oxygen on sleeping unless he was actively ill. He has yet to develop an active illness since the oxygen requirement began. As we head to the sleep pulmonologist appointment next week, I fell like I need to get familiar with forming this word in my mouth as part of the description. HOPING it is just a temporary problem. Tav’s sleep study cannot come quickly enough for me.

Today’s social media allow us the ability to connect with people with similar likes/dislikes, lifestyles or, in the case of my family, parents who have children with similar medical challenges as mine. This network I have written about previously in my post about Community but it has never been more essential or active as it has become after the earthquake and tsunami hit Japan recently. Displaced families across Japan are struggling to find shelter, electricity, food and medical care for their everyday needs. Families with children with complex medical needs are more frantic in their need for these basic essentials.

After the quake & tsunami struck, families reached out to each other through social networks and online media. Once family member status had been determined, families of children with complex  medical needs reached out to their online community of support to help them in their advocacy for the health and safety of their child. When even the basic needs of food, water and electricity are hard to secure, their only choice would be to relocate their family to another region of the world- no small task with a child who often requires direct medical intervention throughout the day and mechanical medical intervention overnight.

Two of these families have reached out to our community and we, family members logging into Facebook at home, on the road, or from the hospital, took up the charge to advocate for these families from our position of safe homes the world over. We answered the call by writing to or contacting local hospitals, media outlets, senators, top government officials and government agencies in charge of allocating resources in areas of crisis the world over. We families, armed with coffee mugs and keyboards, have made a difference in the lives of one Canadian family from Japan who has since relocated to their former home in Toronto. We continue our efforts for another US family still stranded in Japan, concerned for the future of their 14 month old child. Families of children with special medical needs are uniting together to save the world in our pajamas!