The tapestry of the life of a medically complex family

Archive for the ‘Family’ Category

Creating & Building

My Dad has been dead 18 years this summer. He had a favorite sweater I remember especially well. This week I made it into a house-warming birthday gift for my youngest brother. Favorite sweater, handknit by Mom, will soon become a coordinating item. I love to upcycle.

20140212-112428.jpg

The kids had some adventures in creating this week too. There are Valentines to deliver and Tic-Tac-Toe to play. Trachs, kids & hammers…

20140212-112638.jpg

20140212-112652.jpg

20140212-112706.jpg

20140212-112720.jpg

20140212-112733.jpg

20140212-112746.jpg

New Year 2014

2014 came in with an illness bang. Lower sats across the crew & 4L of oxygen for one were the elements of my New Year’s Eve celebrations. 2 days of 6-hour scheduled nebulized medications seem to be working their “magic” & today lung congestion is rampant but oxygen requirements are back nearer to baseline. I am really hoping this is the “turn” of this illness & we’ll be down to 8hr meds & oxygen baseline by the weekend.

This year I hope to blog more- not to high a bar considering there were only 45 posts last year! Be prepared fir updates & poems & cuteness. :)

Hoping for a Happy & Healthy New Year for all of you & yours.

My “Big Kids” of 2014

20140102-114210.jpg

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.

Eostre 2013

A day of fun & family.

20130408-200741.jpg

20130408-200805.jpg

20130408-200822.jpg

20130408-200837.jpg

20130408-200908.jpg

20130408-200930.jpg

20130408-200956.jpg

20130408-201011.jpg

20130408-201034.jpg

20130408-201050.jpg

20130408-201109.jpg

I know how lucky I am

Every day we struggle financially. Each day can be a physical marathon. But everyday I look at my Fearsome 3some and my college-attending teen, I know how lucky I am.

My oldest arrived at a time that may have been “less than ideal”: I was between Grad School Graduation & my first job in a new city- Philadelphia. I signed up to be a control on a “Core Temperature in Depression” study, recruiting non-pregnant females for $75 to swallow a silicone bean & wear a monitor. Imagine my 24-year old surprise! It was a roller-coaster but the answer to my dream of becoming a mother.
My son’s arrival was a flurry of NICU docs, worried nurses & labor-enhancing drugs. He arrived via vacu-assist (appropriate give his surname) and blinked at everyone like: What’s all the fuss? I’m fine. Parenting him was easy & carefree as I look back- but seemed every bit the struggle of every parent as I went through.

When he was 12 years old, my other mothering wish came true: he would have siblings, a brother & a sister, and they would join us in a new home I was able to purchase. His big heart and caring nature were so evident as soon as his brother & sister arrived. When his youngest sister came home, his heart swelled even more. It was amazing to watch & I could not ask for a more clear indication of parenting “success”.

The twins & my youngest may struggle with medical needs, feeding & energy but make up for it in the breadth of their capacity to love, endure & enjoy. They wake each day & immediately check-in with each other. Any separation (like taking my youngest with me to the grocery when a nurse is here with the twins) is predicated with a group hug & concludes with a reunion worthy of a Disney production.
Right now they are sitting at the kitchen table drawing plans for a Leprechaun Trap and sharing their ideas with each other. Yes, there is bickering over who has the box of crayons, which idea is best for the trap, what a Leprechaun will do if they don’t wear green… But most of the interaction is give & take of ideas, punctuated with positive encouragement of “that’s a good idea!”

Medical needs aside, I may be the luckiest mother in America.
(See what 4.5 hours of sleep does for a person?!)

7 days of 7 year olds

Another milestone: 7 years old. Sometimes in this life, you forget time keeps marching. Sometimes you feel like you won’t make it through. But then you arrive: 7 amazing years!

20130308-213915.jpg

20130308-213953.jpg

20130308-214010.jpg

20130308-214036.jpg

20130308-214058.jpg

20130308-214128.jpg

20130308-214209.jpg

20130308-214232.jpg

20130308-214248.jpg

20130308-214309.jpg

20130308-214331.jpg

Another Socratic Sunday

“Nature does not hurry, yet everything is accomplished.” – Lao Tzu

OK. Maybe not laundry, or vacuuming…

20130325-063653.jpg

20130325-063724.jpg

20130325-063738.jpg

20130325-063803.jpg

20130325-063816.jpg

20130325-063843.jpg

20130325-063902.jpg

20130325-063924.jpg

20130325-063939.jpg

20130325-063954.jpg

20130325-064012.jpg

20130325-064029.jpg

20130325-064047.jpg

Follow

Get every new post delivered to your Inbox.

Join 65 other followers