Why We Call Our Blog the Miracle of More

The miracle is a beautiful image of Ephesians 3:20--more than I can ask or imagine. Every day is a miracle. Every moment is a miracle. Specifically for our family, the miracle of more is our family growing in ways I would never have imagined when we first committed to adoption 8 years ago. But, the greatest miracle is the change in ME!

If you have questions about adoption, our work in South Africa, or spina bifida, please email me at rbmattox@bellsouth.net

Thursday, January 6, 2011

When It Gets Hard--UPDATE

UPDATE!! I just have to take a minute this morning before I get busy teaching to say, "Thank you!" Your prayers have made an awsome, inconceivable from the human world, difference in the peace that I feel today. I am so blessed to be a part of the family of God.

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.

18 comments:

Jill and Rick said...

Robbie, I will keep you and your girl in my prayers. This was a beautifully written post.

Jill G

Nicole said...

I understand, Robbie... Katelyn is nearly 5 and still isn't completely dry. Cathing helps, but not enough. We'll be discussing surgery as she gets older... for now, she wears an incontinent pad in her undies, and that (along with cathing)helps enough to get out of the pull-ups. We are looking at possible bowel surgery down the road as well... it's all scary, but God will see us all through these obstacles!!!! Hugs!

Kim K. said...

Extra hugs and prayers for you and your sweet Ellie.

Machell said...

Robbie,

I'll be praying for you and your beautiful Ellie.

Machell

Machell said...

Robbie,

I'll be praying for you and your beautiful Ellie.

Machell

Anonymous said...

Robbie,

You have touched my heart once again...you really are the hands and feet of Jesus...so precious. Ellie is beautiful inside and out. I pray God's richest blessings on her and on your sweet, sweet family.

Susan E.

K said...

I didn't think of panties with a pad in them - what a good idea. I have been thinking of how I can change my Sleep Dry Briefs pattern for bedwetters to a pretty still-absorbent enough pair of panties.

How much absorbtion does your daughter need? Does she soak a pull ups a few times a day or use one to catch trickles and overflow? I'm sorry I don't know enough about spina bifida, but I've sure been educating myself about bowel management training so it shouldn't be much of a jump for me.

I'd love to work with you to design something your daughter would be happier in. It can even be a hybrid thin panty with attached thin waterproof layer with a disposable pad inside.

What do you think?

Meanwhile, I'm so glad to hear that the One and Only Kidney is fine. My heart goes out to you because we all know that psychological and emotional health are as important as physical health.

Jamie said...

I know just how you feel with the panties and stuff. Madi is much younger, so it doesn't bother her as much, but I switched to really cute training pants with enough absorbency to catch any "spills" she has between cathings. She really loves them! We go in for her big tests next week. I know I will feel the exact same way you do if the results aren't good. I will keep you in my prayers, and we would appreciate yours too!

Bobby and Regina said...

We just returned home with a 7 year old who has SB and is also incontinent. I have loved her since way before we knew her SN, and couldn't imagine her not being our daughter. Your post touched me, and I will pray for your Ellie, and your family, and know for sure God does indeed have a special plan for your very special girl!

jasnjoj said...

love, Love, LOVE you dear friend! We're praying for your precious family!

Linda said...

I left you a long note on the SB Yahoo group, and I would be glad to talk to you, Robbie. Ruthie also has only one kidney, and, yes, she and Abby have had this specific surgery. Because of reflux, it was important that Ruthie's be done sooner rather than later. In Abby's case, we decided that since it would have to be done in the next few years, it was better to just get it done. Quite frankly, we also had a deep fear of Obamacare and what would and would not be considered essential surgeries. To us, it was just not worth taking the risk of waiting. Please contact me if you ever want to talk by phone, or just feel free to email me. I think you have my email address, but otherwise, it is on the yahoo group site.

Blessings to you,
~Linda

Sabrina said...

Praying for you and Ellie! Love you, sister!

kitchu said...

we are seeing Susan on Monday for our yearly check up! i stumbled on your blog from the SB yahoo group. SMALL world!

we are getting second opinions on her back though as i haven't been impressed with our neurosurgeon.

you can find us here:

www.hearmorethanthis.blogspot.com

off to read more of your site.

God's Grace said...

Did I ever mention that it's unclear what Arielle's initial problem was that created her bladder problem. I was told that she may need to go back on a cathedar when she gets home. I really don't know what to expect. I'm praying for panties for Ellie. I totally understand that momma's heart to want to see your child's dream come true. Love you sister.

Jill said...

Wonderful post Robbie...I am SO GLAD you shared it. Sweet Ellie blesses the socks off you just as your family blesses her! Sweet, sweet girl!

Janet said...

Great post Robbie, and great attitude! What a special family God gave this sweet girl.

Theresa said...

You know I cried reading this. I'm assuming I also know the child you were speaking of - really well. We have a very strong desire here for underwear, and it seems to get harder all the time. We've got tests coming up Jan. 25th, hoping for some answers. Nice to realize how truly rare we are. I seem to be struggling alot lately with this - "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." What he is going through seems to have done a real number on us since his surgery in June. (Never mind everything else that's going on.)

Just pray for us sister.
Love ya,
Theresa

Talley Images said...

big, big hugs... without saying too much, I can say that I know exactly how you are feeling... its scary being the mama, but thankfully our children have us... love yall

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