"Max has diagnoses that include lipomyelomeningocele, neurogenic bowel, and neurogenic bladder."
Visit:
Max's bladder pressure spikes to 120 cm (40 cm is an uncomfortable pressure for an adult) when the bladder is filled with only 50 mL of fluid. He has three bladder spasms during the 10-minute test.
"How can you be certain that the test catheter doesn't influence the results?"
"He cannot take a bad test."
"He was so tired. That catheter was a challenge."
"You cannot fool this test."
"But...."
Seventy-five–minute visit (it is recorded on the chart):
Max will begin using an intermittent catheter, four times a day. Eight a.m., 12 noon, 4 p.m., 8 p.m.
Also.
Strangers:
"Oh, look how flexible he is!"
"He's going to be a hurdler!"
"Look how he sits! Did your other kids do that?"
No, they did not.And then.
Chart: "Max came to this particular Spina Bifida Clinic due to sudden onset of lower body weakness."
Visit:
The lower body weakness has resolved. Sometimes "lipo kids" have relapses like this. Sometimes it progresses. Sometimes it does not.
That haunting mass at L5-S1.
Some days I sail along sanguinely: I guide the catheter in and out in only a few minutes; I chat and laugh about it with friends; I make blankets for the children's hospital. His legs look normal, really.
Some days I throw the catheter against the wall. I forget to record the urine volume on the chart. I cry.
Today I detest it. I scrape the mass off the MRI in my mind with a razor blade and dice it into pieces too tiny to be detected.
7 comments:
Amy, I cannot even imagine the burden upon your shoulders with Max's physical challenges. I can't even fathom how it must be and I'm so sorry. I wish a million times over that you - or I, or anyone, could smash that mass to bits as you do in your mind! In reference to one of Mother Theresa's famous quotes, I wish the Lord didn't trust you so much! Nothing I can say or do will take away this great challenge. But I hope you will know there are many more prayers than you know, uttered on his, and your (and your family's) behalf. Any many more legions of angels than you can comprehend, cheering you on. I truly wish you peace beyond your circumstance and the strength to continue meeting this challenge as well as you have throughout Max's life. You are an amazing woman. Keep it up, we are all rooting for you! Sending love your way! :)
This was enormously touching to read, Amy. I was unaware of how spina bifida had affected Max and appreciate knowing more about the daily struggles you face. You have a beautiful family and I've long admired the kind of mother and person you are.
Something I heard recently from a General Authority's wife:
"Mortality is the hardest thing I've ever done!" :)
Hang in there.
We're all praying for you and little Max. And Heavenly Father's promises are sure. He'll always provide a way to accomplish what he asks us to do.
p.s. the word verification I got is "glomb." I think that's an appropriate name for the detested mass. Max's glomb.
I love you Amy... You're in my prayers. Come by to play/talk any time. :)
Sarah, Denise, Mom, and Jen:
Thank you for these thoughtful responses. I have reread them several times, and I will again when I am struggling to maintain a positive perspective.
Much love, Amy
Amy, I'm so sorry! You're so brave. It's hard to be a mother, always worrying and wondering. I can't imagine how hard it must be. But I know the Lord knows and loves you. Keep up the great work. I love and pray for you, too!
Post a Comment