A dear, dear friend reminded me that some days are hard. Hard. HARD.
Yesterdays' appointment with Ellie at neurology was like that.
I love NEMOUR'S. I especially love the neurology department and EVERY person there. They are kind and compassionate. They are thorough and truly serve the children AND their parents.
The first part of our day was good. Poor Ellie has to endure urodynamics yearly, which is not quite comfortable, but I get to spend about two hours talking with Mrs. Susan. AWESOME nurse! Loves the children. Loves their families.
So, I was able to share with Mrs. Susan all the LORD has done in our lives over the last few months. When this part of our day was over, Ellie was gifted with a talking puppy, portable home, and change of clothes for the puppy. Fluffy sat with us at lunch at my favorite fast food restaurant, Zaxby's. She had some FF and some chicken and a little Mr. Pibb.
Then, we went back to Nemour's for the ultrasound of Ellie's only kidney. If you read yesterday's post, you now that we were there when I received the phone call, "PA for Zeke!" The technician not only was interested in our news, she began to tear up when she listened to our story. Another medical professional who loves the children and families she serves.
Then it was time to see Dr. Earhard and go over the test results. First, though, it was photo time for Ellie with her gift, Mrs. Susan, and the dr. (I'm waiting on those photos Mrs. Susan.) Then Susan told me to share our news with Dr. Earhard. And, he kindly took the time to discuss what we need to do when they come home, his recommendations for diagnosing the extent of nerve involvement in their repaired meningoceles. Yes, both of the boys have the same "disability" as Ellie.
We talked for a while, but then I could tell by the way Dr. Earhard changed the direction of the conversation that his news would not be good. I know that this news could be FAR worse. I know that it may seem like "not much" to some of you...but I'm the MAMA. Stan's the Daddy. We have been a bit distressed.
I considered not sharing, but if I don't share, how will you know how to pray?
When I first pondered starting a blog, I wanted to make sure I could encourage others who might one day consider adopting a child with special needs, particulary one with spina bifida. So, why this post about the negative news.
BECAUSE, I have learned, that even when bad news comes, it is a privilege to be Ellie's mama. There is no child who I have seen bring more joy to others. If I had it to do all over again, would I adopt Ellie.
"YES!" Mother shouted emphatically!!!!
The difficult days are difficult days, but they do not make difficult lives.
I must admit, in my flesh, I ask God, "Does she have to go through one more thing?" He hasn't answered that question yet, but I believe He understands. But, through many of you, He has reminded me that He has GREAT things for her. He has promised a future with bright hopes in Jeremiah. She was created for His glory.
I reread this post from last summer: Passing Through Deep Waters. He is there to comfort me and He will be there to comfort her.
Now for the news:
The Good News: Ellie's one and only kidney remains healthy. That is really GREAT news, and I should FOCUS there. The medication she takes calms her bladder enough to protect the kidney.
The Other News: Her bladder is not holding enough urine, not large enough, not elastic enough, not unusal in a child with spina bifida. I had hoped changing meds would be an option, but it is not an option with the promise or much hope for different results.
My little girl desires to wear panties...but for now, there will not be panties in her future. For now, she will remain in pull ups. That doesn't sound like much, unless you're the mama of a little girl who wants to wear panties.
If she is to remain dry, she will need surgery to enlarge her bladder. That doesn't sound too bad either, unless you know personally a child who has had major complications following such surgery. We do.
The doctor was kind and patient and entertained my questions and listened compassionatly to my concerns. He did share that these complications are VERY rare, REALLY rare.
So, for now, what does all this mean.
To Ellie, today, it means nothing. She has had an Ellie day! Loud~ Laughter~ Messes~
She was in the local newspaper in our neighboring town. She said tonight, "I look so cute. Franklin looks cute too." She was so proud of herself.
The day of her surgery may be two years away or five. It will depend on her. It will depend on the time when being dry is so important to her, that she is ready for surgery. It will be a decision we make as a family, with Ellie, and with her awesome doctors. It will happen after much prayer, seeking wisdom from above.
And, you know what my job is?
To make sure she remains proud of herself. Teach her that she was fearfully and wonderfully made. To hold her hand when she is afraid. To be the wind beneath her wings.
And, that is my privilege.
So, keep praying for us. Join us in our journey to see how God is going to bless us beyond our imagnation.