The tapestry of the life of a medically complex family

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Memorial Day Modified

Often families of a child with special healthcare needs will celebrate holidays or family events in ways that are different from others. My family has 2 children with trachs, one on full-time oxygen, & another who has severe asthma & heat & exercise intolerance. These health characteristics change the way we celebrate but do not lessen participation- different, not less.

For Memorial Day, we spent most of the day indoors, away from the heat & smoke from our neighbors’ fire pits. We grilled steak on the Foreman & made salad & veggies on the stovetop. We paused during our day to learn about the purpose of the day & talked about our family veterans to honor their memories.

It was a fun day, with many of the features of traditional celebrations throughout the USA. Just as your celebrations differ from the neighbors, we did it our own way.

Hoping your Memorial Day was a fun, family event. Thank you to the Veterans who have sacrificed for our freedom.

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Homeschool Choice

To the doctors and others who judge my decision to homeschool:

It has come to my attention that there is some confusion about the reasons I homeschool my children. You are familiar with the medical reasons (trachs, illness susceptibility) but may not be aware that my choice is also based on the “whole child” needs of each of my children. In addition, it is in part supported by my knowledge of and experience with the US public school system’s structure & variability. For the purpose of this note, I will focus on what is right about homeschooling for my children.

Homeschooling allows for individualization of curriculum and instruction for each of my children. It allows my gifted & talented learner to stretch her abilities at her own pace, my middle ability learner to make age & grade level progress, and my challenged learner to receive appropriate instruction to move skills forward more rapidly than would be possible in a large group setting. It allows me to address developmentally & academically (MA Curriculum Frameworks) appropriate activities within a topic that captivates interest & keeps my kids motivated to keep moving forward in all curricular areas. Each of my children is learning at a good pace, demonstrating the success of their homeschool program.

With regard to social skills, my 3 children span less than 2 academic years in age. Unlike peers enrolled in traditional schooling who spend close to 5 hours a day listening to an adult or completing individual tasks at their desks, my children spend much of each day discussing interesting topics, playing interactively & encouraging each other’s learning. Although they are ‘familiar’ play partners, there is little predictable about their daily play choices & interactions. My child with an autism spectrum diagnosis is encouraged, challenged, instructed and drawn in to dynamic, sustained social interactions daily. Because they are supervised by both nurses & myself, they are regularly exposed to different levels of structure & independence, across different activities. In addition, local cousins (there are 4) visit regularly to participate in play as health allows.

Every day of the week, each child has structured & adult-directed learning activities, individually & in a group. Each completes familiar learning tasks independently, with new curriculum, on multiple days a week. They are read to, read silently & read to each other nearly every day. They do yoga, play ball games, swing, slide & run about daily. Because of their heat intolerance & health, they do tend to spend more time inside than out but have balance beams, an indoor swing & a loft slide for active indoor play as well. Homeschooling allows for spontaneous “field trips” to the beach, historical sites, birdwatching, the aquarium & movies.

As their health improves, medical status changes &/or I return to paid employment outside the home, I will continue to homeschool. I have the skills & intention to homeschool through high school or until such time as one of my children makes a valid case for their individual transition to a private or more traditional school environment that we can afford. Homeschooling is a family value that far exceeds any medical reason to do so.

The Day Before Again

Originally I published this piece the day before my friend’s son’s first birthday after his death. This week has been one of tremendous loss in my community of friends and another friend is trying to get through a 10th birthday- that isn’t. My heart is still touched by these many children. Here is my message to E’s Mom:

SO many posts are running through my head but the one I need to write TODAY is this one- because tomorrow I can’t say all that needs to be said today.

Today is Tuesday. Today is just another day. Today is the day before the 5th birthday of a child of a wonderful friend of mine. Today should be a day for last minute preparations, baking, decorating, stuffing gift bags… but it’s not. Because my friend’s child had a complex medical condition and he died last fall. He is dead. People can say the ugly words religions use to describe this, but saying “angel”, “heaven”, “whole again”, “in the light”, NONE of these things fill the emptiness in my friend’s arms, the ache in her heart, the agony she is experiencing as tomorrow approaches. Tomorrow she faces another “first” in the list of events after the death of a child- his first birthday on which he will not age, he will not enjoy candles and cake with she and his younger brother, he will not… anything. He no longer exists in the physical realm we experience on Earth. It SUCKS. And I am angry at the Universe that so many of my friends have to, or will, experience this pain.

I want to remind her that tomorrow is no different- it is not special in its difference from each and every day- every painful day without her son. It is holding her now in a state of terror, fear that tomorrow will bring the collapse she has spent all these months fighting. That does not make tomorrow more special than any day this week, or last week, or last month, or Christmas or any other day. Tomorrow will come, and the searing pain and agony of his loss will be great, but not as great as that first day, that first moment of knowing and not being able to bring him back. I want her to know that she survived the worst on that day, that she has the strength to face and get through tomorrow because she has already survived the worst. She has already committed to continuing, to thriving, to supporting her other son to thrive, as the son who has died would want. She is so strong- although she is feeling as if a drop of water, a shift in the breeze, might be all it takes to break her. She is strong and she doesn’t need to be- because we are here to help hold her when the journey knocks her down.

I want her to know, and to feel, that she is loved and supported and right and just on her trail through the perils of the loss of a child. What I want to do is go to her; to bring cake, to bring candles, to bring wine, and to sit and hold hands and hug and cry and laugh and remember the beacon her child shared with the world for his short 4.5 years. I want to celebrate the gift that was her child. I want her agony to soothe, her memories of joy to once again be strong. I want some of the moments she experiences to be filled with peace. Please know we love you and will be celebrating the life of our special friend tomorrow.

Blueberries 2013

Although it’s rarely easy, I work to give my kids age appropriate experiences. Today we packed up oxygen, suction, cooling vests and the wagon to head off to the blueberry patch. Trachboy picked nearly a half hour before needing the cooling vest & to sit in the wagon. The girls fared better, Youngest sat to pick but moved between rows pretty well considering. Trachgirl even handled being buzzed by a bee.
Trachboy needed suction a few times and an oxygen increase to 1.5Lpm to keep going (seated) but he ate more than the girls while there in the bushes. Lunch was delicious with the fresh blueberries in our homemade yogurt. Enjoy the photos.

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The Gift of Special Needs & Illness

I was chatting with another Mom to a child who will not outlive her. It is a difficult awareness that we live each day. A difficulty that is not without its own gifts for we who live it.

I think one thing about our kids:
It won’t always comfort us, but their strength through all this adversity, their joy, their sweetness, their ability to draw people into our lives who understand- who love us & them- that legacy will stay with us when we no longer have them with us physically. YOU, other parents of children LIKE mine & different from mine… it’s a gift my children have provided that will outlive them.

Bittersweet gift, but a gift for which I will forever be thankful.

Staring

I cannot stop staring at her hair. It is thick and blonde and perfectly coifed. It is the kind of hair that begins partway forward on the forehead. It is PERFECT today. And I cannot stop staring.

Her mouth is moving – telling me she has breast cancer. She is scheduled for a second opinion & surgery next week. She needs time off from helping my child to address this devastating health issue. I nod. I gulp. I think of her 9 & 11 year olds, her husband.

And I can’t help staring at her hair.

Patrick’s Sunday

PEACE.

Play
Ease
Adventure
Childhood
Experience

PEACE

Our St. Patrick’s Day adventure- on a bitter cold New England day.

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