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It Takes a Village (and then some) to Raise a Child with Special and Complex Needs
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Do the best you can…
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Campbell in waiting room
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Is That A Minibar in Your Closet? Taking a Moment for Yourself
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What Would June Do?
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I made a promise…
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Spotlight on charity: cleftAdvocate
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Matthew with Campbell
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Celebrating Milestones

It Takes a Village (and then some) to Raise a Child with Special and Complex Needs

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Campbell enjoying a puppet show by a youth group during the building of a handicap ramp for our home by Red House Baptist Church
There’s an African proverb you may have heard, “it takes a village to raise a child.” Hillary Clinton wrote a book in the late 90s using that concept and in recent years, Pope Francis had Italian school children chanting the mantra.
I’m sure most of you can probably agree this is true with any child. Parents with children who have special needs live this reality daily and may even add to the list of villagers.
It takes a village, several specialists, therapists, maybe the next village over and having the National Guard on standby isn’t a bad idea to be honest.

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“Do the best you can until you know better.  Then when you know better, do better.”

~Maya Angelou

 

Campbell in chair

Campbell in the waiting room at Cincinnati Children’s Hospital decked out in her University of Kentucky blue and white.  With custom UK AFOs (Ankle Foot Orthosis) of course!

Is That A Minibar in Your Closet? Taking a Moment for Yourself

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I’ll admit that there are some days; all I can do is step into the closet, close the door and cry.
Granted, I don’t get to stay in there too long but it is a nice escape.
Here’s an example of an instance when I’ve used this coping method.
I’ve been on hold with the insurance company for 38 minutes and got cut off only to call back and be put on eternal hold again.
Next, I was repositioning Campbell in the bed and her feeding tube got caught and was pulled out. I calmly gathered everything to quickly put it back in because those darn g-tube sites close up quickly.

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What Would June Do?

June Cleaver
One of the recurring themes on this blog will be a series of posts that address “What Would June Do?” I initially came up with the idea for this blog when I was constantly failing to live up to the image of the “perfect” mother.
My mind instantly went to June Cleaver from the classic television show, Leave It To Beaver, when I envisioned a suitable role model.
If you haven’t seen the show, Google it. You’ll learn a thing or two, especially how to rock a dress with pearls while cleaning the house.
After watching for just a few minutes, I’m sure you’ll quickly realize that it’s virtually impossible to be as put together as June Cleaver is, at least all the time. Yes, there are those women who look like they have it all together but behind closed doors or when they shut the van doors in school pick-up line, it’s more Peg Bundy or Roseanne.*

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“I made a promise to myself when you were born to teach you about love, strength and happiness.  I just never knew you were going to be my greatest teacher of all, my child.”

– Unknown

Spotlight on charity: cleftAdvocate

The first thing we faced when Campbell was born was a bilateral cleft lip and palate. I had a healthy pregnancy and nothing abnormal was detected during the one ultrasound at twenty weeks. When she was born, we were surprised that she had a craniofacial abnormality.
I’m often asked if I wished I had known prior to her birth. Honestly, I contemplate that question myself. I instantly said it wouldn’t have mattered because I would love her just the same. I refused having the usual pre-natal genetic testing with her anyways. I even felt that it might have been better not knowing since I didn’t worry beforehand.

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Matthew and Campbell

Matthew with Campbell

“If you want to know how to treat a child with special needs, look to their sibling.  They will show you.” – Unknown

Celebrating Milestones

Princess Campbell
My beautiful, sassy daughter Campbell will turn ten in a week. I’ve asked the age-old question, “where has time gone?” a time or two lately. It seems we give birth to these precious babies, think we will never get through the toddler years and then all of a sudden, they are growing into young adults.
There are so many milestones along the way that we look for our children to accomplish. As the mother of a child with complex medical needs, those are very different than the ones outlined for a “typical” child. Sometimes those milestones are never met.
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