Category - Uncategorized

1
A Decade to Diagnosis
2
Where Have We Been??
3
More Than You (Or I) Ever Wanted to Know About Genetics
4
Life is a Battlefield
5
To The Mom Whose Child is Undiagnosed
6
Why It’s Okay for Your Child to Stare at Mine
7
The Super Bowl of Special Needs Parenting: Thanking Your Child’s Team
8
It Takes a Village (and then some) to Raise a Child with Special and Complex Needs
9
Is That A Minibar in Your Closet? Taking a Moment for Yourself
10
Celebrating Milestones

A Decade to Diagnosis

 

It’s the eve of Campbell’s birthday and I can’t help but reflect on the last eleven years, particularly the last few months. This past October, we finally received a diagnosis for her unexplained symptoms after a decade of searching for answers.
I wrote about our journey in a blog post where I attempted to give advice to other parents facing the prospect of having a child with an undiagnosed syndrome. I talked about making peace with not knowing several years a go, yet I occasionally wondered if the day would come when we would have a “why” to the cause of her complex medical needs.

Read More

Where Have We Been??

My mom asked me the other day, “Are you still doing your blog.”
I paused because I wasn’t sure how to answer. I haven’t posted here in months, even though I have updated the blog social media accounts sporadically. If you don’t already follow those, you can find us on Facebook and Instagram.

Read More

More Than You (Or I) Ever Wanted to Know About Genetics

IMG_4022

 

The last few weeks have been filled with several doctor appointments for Campbell and I’ll admit my brain is on information overload.
One of those appointments was to the geneticist that involved over two hours of updating her medical information along with listening to her doctor explain the newest advances in the fascinating but complex world of genetics.
I’ll be honest, I’ve had trouble with trying to explain everything to family, friends and her therapists, much less writing this blog post without confusing everyone and ultimately myself. Sometimes the more you rehash something, the more questions you have.

Read More

Life is a Battlefield

I’ve always been a huge lover of words. Not surprising coming from someone who loves to write, I keep quotes and song lyrics in numerous journals I’ve collected over the years.
Not a day goes by where I don’t read or hear words that strike me as relatable to something going on in my life. Many times I see or hear words at the right time and it will help me see things in a new perspective.
Just the other night, I was feeling down and discouraged. We had a lot going on at home, including Campbell having a few seizures that are typically controlled by medicine.
This may be a surprise to some people who know me because I’ve learned to put on a good face, to smile and say I’m fine when really it’s the furthest thing from the truth.

Read More

To The Mom Whose Child is Undiagnosed

IMG_2491

I noticed you right away as I walked into the waiting room at the geneticist office. You were the mom with the binder stuffed full of medical information pulled from the Internet, just like I was ten years ago.
I could hear you talking excitedly to your husband who was holding your son in his arms. You were optimistic that you’d finally discovered some information that might lead to an answer to your son’s problems.
I listened as you used language that would make a bystander think you had a medical degree, but I knew the truth. You were self-taught by the indomitable will and determination of a mom searching for answers.
I watched as you gathered your belongings when the nurse called your son’s name and we made eye contact briefly. We smiled at one another but I caught the questioning look in your eye. I knew you wanted to ask about our story.

Read More

Why It’s Okay for Your Child to Stare at Mine

IMG_2155

“Stop staring! It’s rude,” the embarrassed mom loudly whispers to her daughter before she drags her away from us. My daughter Campbell, who is in a wheelchair, is fortunately looking elsewhere at the time.
I just stand and watch the situation unfold and observe the child as she looks at her mom with a guilty face and then mutters, “I’m sorry” before turning back once more to look at us.
Don’t be sorry,” I silently think to myself, “it’s okay to look. Once you get to know her, she’s not so different from you.”
Read More

The Super Bowl of Special Needs Parenting: Thanking Your Child’s Team

IMG_1730

Campbell at a fundraiser for Visually Impaired Preschool Services (VIPS) with former professional football player (New England Patriots) and Super Bowl champion, Marty Moore and his wife, Wendy 
The other day, I wrote a post about how it takes a village to raise a child. That village becomes your support system that we often refer as Campbell’s “team.”
Whether it’s her medical team or school team, we all work together to ensure she receives the care that she needs.
When Campbell turned ten a few weeks ago, I decided to throw a big birthday celebration to mark this milestone. I wanted to celebrate her decade of awesomeness but also invite and thank all of the people who had been involved in our lives over the past ten years.

Read More

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

IMG_1845

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.

Read More

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

IMG_0915

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.

Read More

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.
Read More