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| Who coordinated this outfit anyway? |
Have you ever climbed a mountain with the intent to get a better, higher view only to realize--when at last you ascend the peak--you just climbed a foothill? Your view is slightly expanded . . . you now see where you’ve been. Ahead of you, however, lies miles upon miles of additional foothills, each seemingly just inches taller than the one before. The highest mountain peak--the one you thought you were ascending is yet valleys and shadows away.
That is where we’re at with Addie. All that transpired before to get her here and to get her home were only foothills. The reality that we are just at the beginning of the trail of ascension is settling upon us. Because the journey ahead seems overwhelming, we take comfort in repeating oft the Lord’s counsel to His apostles: “Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof” (Matthew 6:34).
One step at a time . . . that’s all we’ve got to do.
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| Sleeping Beauty |
Before leaving the hospital, the neurologists told us that most children with epilepsy die before they reach 5 years of age due to complications of seizures, not the seizures themselves. Aspiration leading to pneumonia is the main cause of death. Another complication of “ceasars” (that’s what my kids call them) is not being able to breathe--cutting off the oxygen to the brain. Thus, we monitor Addie 24/7 in an effort to prevent these complications. ZZZ zzz ZZZ zzz! :-)
Addie is doing much better now that she is home because of our consistency in care. We’ve found a way to help her from vomiting her meds--by positioning her upright and rocking her gently until her coughing/gagging fits subside. By getting her meds to stay in, her seizures are somewhat under control . . . at least better than at the hospital. She’ll have fantastic days where she seizes only a few times per hour. Still other days or nights bring seizures every 3-5 minutes. The meds make Addie nauseous, dizzy, and sleepy. Due to this, we don’t have much time to interact with her to help her develop. She is four months old, but she is like a newborn infant--no head control, no spontaneous arm/leg movements. I call her “my floppy baby.” She is gaining weight, however. In the hospital, she lost more than she gained. Under our care, she gained 9 ounces in 5 days! (My secret? I give her my fattiest milk--the noon pumping.)
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| Tummy Time |
Additionally, Addie is sooo loved! Brothers, sisters, mom, and dad send all this love energy her way as we take our shifts at her bedside or try to interact with her in those rare moments when she is awake and seizure-free. In the hospital, she was poked, prodded, awakened for temp checks/diaper changes/heel sticks/positioning/suctioning, x-rays, etc. At home, she gets to sleep in. She gets her hair done nightly by her sisters, manicures, massages to loosen limbs, peek-a-boos, and loving arms to rock her. The BEST thing about having Addie home? No more tortuous daily goodbyes!
We don’t know what lies ahead--the life Addie will have or how long we’ll have her precious soul with us. The spectre of death hovers over our doorstep. What we do know is that no one knows when their time on earth is up. Though Addie awakens us to this reality, is it any different with any of our other children or for you or I? Any day could be their, your, or my last. We must take courage in the truth that mortal earth is not our true home--only a stopping point in our eternal progression--and rejoice that because of Christ, no goodbye is ever permanent!
The best each of us can do is wake up every morning with the intent to live that day full of love for life, for family, for friends--and repent when we fail--especially when it comes to those we should love ‘mostest’! Maybe that is really what the Savior wanted us to learn when he said, “Take no thought for the morrow. . . .”
May your New Year be as blessed as you've made our 2017!
God Bless each of you, our dear friends.
--The Wightmans
