Category Archives: undiagnosed

I hit a turning point in my life when I…

Growing up sometimes sucks. You have to grow up at different points in your life. First you have to learn to tie your shoes and you learn you can no longer depend on your mom doing everything for you. As you get older you learn there are times to lean, times to cry and times to put your big girl panties on.

I hit a turning point in my life when I accepted Boo’s undiagnosis (yes, I just made up my own word). When Boo was first in the NICU we didn’t really think past let our baby live. It was on her second admission at just a month old that I began asking, “what was wrong with my child”.

I wanted to know the why so I could know the outcome. I needed answers so I would know how to “fix” Boo. I wanted a manual on how to make her “better”. I felt it was “unfair” that she had some unknown genetic abnormality. That she didn’t fit the mold of any diagnosis, disease or syndrome.

And four years later, I still feel guilty for my poor choice of words.

From her pediatrician to her neurologist to her genetics physician I would demand answers and be told: you may never have the answers. Just keep doing what you are doing, eventually the science will be there to help Boo. Notice they said help, not fix.

I don’t know when exactly, I put my big girl panties on and stopped focusing on “why” or “fixing”. It took too much time and too many admissions. Boo was put through so much testing. Necessary, but painful testing. Heartbreaking testing that gave us more questions than answers.

At some point I hit a turning point and I just accepted Boo’s undiagnosis. I stopped using Google as a diagnostic tool. I began accepting this life as a mom of a special child. I still carry on with doctors, therapy and special programs. I advocate for awareness. I have Boo “on display” so others will be invested in her life. Because someday the science will be there to tell us why Boo works harder than most children.

Yes, the why is still important but not the most important detail of my day.

And when I hit that turning point? That was the day I began living life to it’s fullest with Boo.

This is how I hit a turning point in my life to Finish that Sentence Friday. What was your turning point?

The day we tortured Boo

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We are surrounded by the ocean/beach. How we had Boo, a child terrified of sand and all that is beach is still a mystery to us. But we are determined to make her a beach bum. Every summer we take her and in the beginning it is horrible. But last year for the first time Boo stood on the sand! It took crocks, socks and a pretzel stick. But she did it!

It took a lot of work for her, but we were all so proud. This year Boo walked on the grass so I (mistakenly) thought she was ready for the beach. Sure she freaked out at home when I took her socks off and made her walk barefoot. But it will be great, right? We put the girls in the jeep and drove onto the beach.

Big mistake. I swear it was the windiest day of the year. Boo did not handle it well. The poor thing whimpered for an hour. We tried everything. Including hiding her under a blanket.

Unfortunately we choose the windiest day of the year for her first attempt. It was so bad a friend left because her husband was being so cranky! At one point we looked down the beach and thought it was fog, but nope it was sand from the dunes.

You can see her trying to be brave. She was watching Allie have fun and but didn’t realize Allie was having fun. She thought the waves were hurting her sister.

But in the end, after about an hour, we finally gave in and packed up to go home. All we heard was “I no like” (hey a sentence). Once in the jeep life was calmer. For the first time she didn’t panic in the jeep at the beach.

So progress was made.

Then today we got the notice that the beach is closed through most of July due to some endangered birds. Apparently birds take precedence over summer fun.

I think if Boo realized the reprieve the birds gave her she would do a happy dance.

Comfort

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Today’s 5-minute Friday challenge is “Comfort”. Ready, set, go….

Comfort is having a day that I break, just a bit, and a friend from half-way across the world responds.

Comfort is being so frustrated by the doctors who recommend a therapy for Boo that is not available due to her lack of a diagnosis, and a friend from 8 hours away not only responds immediately to my URGH e-mail but then spends her day finding a way to make it happen.

Comfort is knowing that I am not alone in my struggles.

Comfort is being able to see the light of Boo’s smile as she charms a gangster, who might not have been a ganster.

Comfort is seeing my Boo race to the school bus to see Allie home.

Comfort is my husband knowing I had a bad day, so he disappeared for a while.

Comfort is being afraid and having someone hold my hand.

Comfort is knowing that when it becomes too much to handle, I am allowed to wallow in the land of self-pity if only for a moment.

Comfort is having more awesome days than bad.

Comfort is having my child home with me safe and happy, never knowing that mommy is overwhelmed.

Comfort is having friends get pissed off on my behalf at the unfairness of it all.

Comfort is having those same friends see the beauty that is Boo.

Comfort comes from awareness that all parents feel overwhelmed and want to hide, preferably with alcohol and chocolate.

END.

Today, like most Fridays I really think that Lisa-Jo picks a word that is totally appropriate for my state of mind. I don’t quite know how she does it, but I am happy that her prompts help me work through whatever crap I am going through at the precise moment of time.