Sometimes I get done. Just done. I’m not a hero. I am not a saint. I am just a mom. Sometimes just being mom seems to be too much to ask. I lose my temper. I lose my cool. I lose where I put my keys. 

I am never prepared for what will take the floor from beneath my legs. I think I have it handled and then BOOM. I am back in warrior mom mode.

Boo has had a fantastic year. She really has. She has come so far. She has made friends. Been to birthday parties. Learned her name, her age, address and (most) colors. She can count to four (more with Abby prompting). She has become (somewhat) toilet trained. She asks for her therapists, she wants to see her teachers. She stole Abby’s stuffed rabbit (hello, milestone!).

Recently Boo was referred to a neuro-urologist. Fancy title who knew that discipline existed? His mom must be so proud. He was great, all kidding aside. Older, beyond knowledgeable and respected. Here is what concerned me: Boo’s GI had contacted him throughout the years asking his opinion on Boo’s stomach issues. Boo’s GI did not refer me to this doctor. Her pediatrician did, after I saw GI and she said that Boo’s funny smelling urine (too much info, I understand) should be seen since that is not what she treats. Also Boo has been complaining about stomach pain but is on the maximum dose of reflux meds. Maybe there is something else going on.

For years? Since she began toileting? If this GI doctor, whom I respect and trust, has been consulting this other doctor why didn’t she refer us earlier! Why is it left to me, the mom without a medical degree, to find the best neuro-urologist in the State and get referred? Why do I have to then call the GI and tell them to write a note of referral? 

I take Boo to see this uber-urologist. He asks if she has ever had an MRI. I explain, yes that is how they found the tethered cord. She had spinal surgery in 2011. His reply, oh with her lack of bladder/bowel control and toe walking I am wondering if her cord is tethered. Since it has been surgically untethered there is a concern that it has reattached itself. WHAT!!! Sure it is rare that it might have reattached. But this is Bridgetitis we are talking about.

It gets better….as he reviews the 2011 MRI he states to the medical student do you see she only has one kidney? Now, I am not a mom with a medical degree but I do know that most children come with two kidneys. This is not something a doctor should announce to the unsuspecting parent. 

But wait…there it is! They found the missing kidney. But they are unsure if Boo’s spinal cord has reattached itself to her bladder. In June she will have to go for more testing. Invasive testing. While not painful it will require me holding her down for yet another test.

I sometimes wonder when does it stop? To the uninitiated it seems okay, it is just one more test. To those who have never had to hold their child down during a medical procedure I say whatever God you believe in to Bless you and yours. I hope you never have to experience these feelings. But me? I’m kind of losing faith. I am heartsick and tired of getting to the comfortable part of being Boo’s parent to being the parent who has to bear witness to her pain.

I do not understand how God could let my friend’s child have cancer. I do not understand how Boo who is the most precious of children has to suffer such pain. I do not understand why a parent who has never willingly harmed her child has to hold their child down while others do. Lab draws, catheters, ultrasounds, surgeries, therapies and the list goes on.

When, dear Lord, does it stop?

I am not a hero. I am not looking for some one to say, there there it will be okay. Because it won’t. Being Boo’s parent doesn’t make me a hero or a warrior. Any parent would do and feel the same.

It’s just sometimes I wish I was Abby’s mom. Cause that is a hell of a lot easier.

2 thoughts on “Sometimes

  1. Pingback: It’s not all sunshine and unicorn butts…. | (Un)Diagnosed and still okay

  2. Pingback: Unknown issues | (Un)Diagnosed and still okay

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