I wrote it this past January. I just added a few things to it and updated it. Since then we have learned that Ellee will need another PAO surgery this coming August. Her other hip actually dislocates every time she walks! As a mom I can say I have ALWAYS supported and TRUSTED my baby knowing that she is hurting when she says so, without a doubt! Unlike the haters out there, doubting and accusing her of lying, making up stories, etc. The multiple range of pain due to a invisible disease run deep.
Thank God, that we know God!
For those with out Him, I mourn deep. When I was without Him, I was lost. This world led me to everywhere, yet to nowhere fast.
For I know that my Redeemer lives,
And He shall stand at last on the earth;
And after my skin is destroyed, this I know,
That in my flesh I shall see God,
Whom I shall see for myself,
And my eyes shall behold, and not another.
How my heart yearns within me!
Job 19:25-27 NKJB
I'm tired of these reindeer games: Can I just quit now?
NOT kidding people, can I? P....lea.....seeeeeeee. And by the way, from whom do I get permission anyway, to quit that is?
I don't want to be a grown up right now!
I've asked myself these secret questions so very many times before; How many times are we gonna do this? Is this how it's gonna be? Can we just quit coming here? But these questions were always directed towards myself and they were during my entire lifetime of growing up. Right up until my very own last visit to the ER, which was just before Christmas, about approximately 13 weeks ago.
That's when we found out that I have a small brain tumor (which is besides the point).
Surprise!
I found myself in the ER again LAST NIGHT. Only this time the reindeer game had switched up a bit. This time the main player was my little precious fawn; Ellee. Now THAT in itself changes things. And it has mixed-matched the game up for about 12 years now as we have come to slowly find out that she too has the same RARE disease that I have and her very own unique co-morbidities to go with it. Now the reindeer games in our household are somewhat of "Impromptu-ish Reindeer" games as we never know WHEN we will play, HOW we will play, WHO will play or WHERE we will play.
This keeps it rather interesting to verbalize the very least.
Last night being the perfect example.
I came to Lynchburg for 2 reasons this short week.
1. To help Ellee with a few tasks as she normalizes life and college without her crutches and hip brace for the first time after surgery
2. To rest myself after a rather intense season of health issues and diagnosis' and to work on my book.
I will have to admit, I was slightly befuddled and rather slammed upside the head by the impoverished hospital that we found ourselves in.
This time, rushing to the ER
I was the momma deer of the baby fawn who was hurtin' and hurting' bad. I've done this before. But not being the one hurting, I was out of my realm. Our family position and roles were quite mixed up last night so it didn't quite go as smoothly as usual. Let's just put it this way, dad wasn't there.
So me, limping on one crutch, rushing to park, quickly telling the ER personal that I was NOT the sick one. Trying to direct everyone to my precious daughter who appeared to look FINE. Once again, FINE, being the word, the definition, the phrase, that has been a curse and the utter torment of our disease.
The meaning of, I'm fine:
"I'm sure you do not have the time nor do you have the care to find out how I really feel therefore I do not have the energy to tell you, so I will go with the simplistic answer of fine."
I won't quit!
If this is my life. I "will take it!" I'll take the excruciating long 3 hour long wait just to be called up to get vitals, if it means talking and bonding closer with my family members, and perhaps gifting a stranger with my bible. I "accept!" if it means missing out on my own plans that I had for that night to instead spent the evening holding the hand of my precious child helping her to understand that she is my everything and that she comes first. If it means reading the Word together, reminiscing about travel experiences, and perhaps calming a sick lady's crying baby down. If it means learning together not only how to fight this battle but how to fight it to the glory of the Lord! To fight it with true JOY in our hearts! Knowing that our real home will be perfect! Knowing that we can be a light to others who suffer! We can actually bring them the good news of HOPE and LOVE that only Jesus can provide!
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I CAN do THAT!
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I am EXCITED just typing THIS!
This is our life. We were chosen!
For what, we still ask.....we sook, seeked and are seeking the answers......but if what the Lord continues to reveal is any bit as marvelous as what He has already done so-at least in my lovely life-than I run like a feeble runner to the wooden pulpit and I accept!
I would die to be in the valley, chosen by my Father to suffer and grow; therefore be molded by my Maker. Therefore I am rooted to Him and serving as He to His glory, self dead; Rather than living by the world. Praise our perfect father for He loves us so! JLE
For to suffer...
Beloved, do not think it strange concerning the fiery
trial which is to try you,
as though some strange thing happened to you;
but rejoice to the extent that you partake of Christ’s sufferings,
that when His glory is revealed, you may
also be glad with exceeding joy.
1 Peter 4:12-13 NKJV
Our Diseases and Comorbidities
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| Ellee: Ehlers Danlos, Postural Orthostatic Tachycardia, Endometriosis, Hip Dysplasia, Chronic Fatigue Syndrome. |
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