The tapestry of the life of a medically complex family

Archive for the ‘kids’ Category

How it is Done

The number one question I get from others: “How do you do it?” If you want to know the specifics, you can read about one of the typical days here. But most people are really asking “How do you get ALL of it done? How do you keep going, day in & day out? Where do you get the strength to get up each morning and ‘have at it’?”

My standard short answer is: I just DO. And sometimes not very well… but when it’s a person who really cares, who may have the same things they need to do every day, who might be feeling like they cannot keep on “doing”, I try to give it more thought. Here’s how I think I get through each day:

I am aware of the “big picture” but I work to not get bogged down by the overwhelming list of things, start to “finish”, of every day. I try not to look at everything ahead all of the time- if I do it will quickly overwhelm me. I try to keep really focused on getting the next thing done. I try to remember I am only one person, I can do one thing at a time. I am bad at cutting myself some slack but I have worked to get better at it.

Probably, most importantly, I try to spend part of every day ‘being present’ – noticing what my child or children are doing. Remembering that they have each other for the future. Really watching & experiencing the wonders they really are- looking at how far they have come, the love they show for each other, caring for others. It helps to remind me that, altho I sometimes have a bad day/ horrible parenting moment, my kids really seem pretty ok- sometimes bratty or crazy in their own rite- but then they show me who we really are as a family. Sometimes, when I ready to leave for the grocery store and the twins hug me & say I love you, they call for their sister who they give the same. Something about your 4yo blowing kisses to her sibs to say goodbye, waving & yelling “I LOOOOOVE YOU!” back thru the door- it just lifts you. Days are harder when I don’t have the time to ‘notice’- and sometimes there are lots of those. There is a great blog post about parenting. It’s not exactly about my experiences, but it’s a good reminder to all parents- a quick summary is that we will look back & be happy to have parented, even if not every moment going through feels all that wonderful. (Huffington has that post here)

I always close EVERY day singing “Love You Forever”, 1-to-1 with each kid. And they sing back in their own way- they actually have become good at it. Its my way of telling them, no matter what, at the end of the day, you are the love in my heart- and you always will be.

And whenever I need a reminder of what it’s all about, why it is that I do what I do, I only need look here:

Outdoor Play

Getting outside more has been a goal of mine for some time now. This week, I finally got some time with a nurse so that I could go get the final pieces of wood and hardware for our latest outdoor adventure. THESE are the faces of SUCCESS!

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So Happy Its Tuesday

Today’s another wheezy day

Reduction in their time for play

Nebs on meds on nebs again

The Vest, some care, neb number 10

 

Top of hill there’s feeding woes

Slower than the sloth it goes

7 hours every day-

How long can feeds go on this way?

 

Love and hugs and play and song

Are fit between the meds along

Bedtime pause, sing one-on-one,

Then more nebs ‘fore day is done.

 

Lest we rest, we do not dare,

Pause in loving complex care.

Future hopeful, but unknown,

Days are PICU in our home,

 

Memories are made each day

Special moments on the way

Ne’er forget to cherish each

Love each other, this do teach.

 

4-3-2012

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.

A Parallel Life

My family has lived in New England for multiple generations. My Mom’s family was originally from New Jersey but even her sister moved to New England after her parents died. My Father’s family lived back and forth between a few of the neighboring states here, but always New England after their family arrived in the US during the Potato Famine.

Most of my family, including first cousins, live within 250 miles of Boston, MA. Of 12 first cousins, only 2 live outside this region. There are frequent family get-togethers & the children of my sisters & cousins know each other well from frequent connecting at these gatherings. Well, all children but mine.

Because of my children’s health challenges & susceptibility to illness, we rarely get together with my family members- even those who live 10 minutes away. My nieces and nephews attend schools and gymnastics classes and … birthday parties. [scandalous!] These outings are a part of childhood for most children the US over- but my kids catch everything [by “everything”: they caught Scarlet Fever after attending a RedSox game last June- yes, 2011, not 1906…]. To keep healthy, we bow out of every family gathering when one kid is sick- or ANY relative is ill or feels like an illness is coming on.

When my kids came home, I thought my family was ready to welcome them with open arms. We talked of sharing dinners, playing in back yards, walking along our local bike path… Then my kids seemed a whole lot sicker than my family had prepared for… There were more needs, more medical treatments, more emergency room visits and in-patient stays. One relative even hangs up when I call from the ER- treating each of our emergency trips as tho they are “attention-seeking” vacations. Sometimes you want to just nod & say: “Yeah. My kids are checking in to the Club Med floor here at Children’s…” I live a parallel life with my family- nearby, following along, but never quite in the same place.

A Craft in Photos: Warm HUG

Our warm hug:

This is the blanket we made for the nurse who left. Each time she uses it, she will be getting a group hug from 3 little ones who really, really love her. Flannel hugs on a double-fleece blanket- warmth & love. 🙂