Unvarnished

To be honest, lapses in posts lately occur not when I have nothing to say, but rather when I either don’t know how to say it, or don’t want to say it. I was talking with a friend, who is also going through a challenging time that she is sharing via a blog, and she laughed as she said, “This blog thing has gotten totally out of hand…” I questioned what she meant, and she answered that so many people now think that parts of her life, herself, her family are “the epitome” or a fairy tale. I smiled a knowing smile. If you could only know how many times I nap because I can’t face what is in the other room, how many times I simply don’t do what I know to do because I am lazy, or sad, or on the verge of quitting.

These past two weeks have added a new facet to our journey..Abbie visibly, and audibly suffering. I think most of it has been tummy upset, so we’ve changed her diet temporarily. Until a few days ago she’d been subsisting mostly on chicken broth and supplements. We’re working milk and food back into her diet now, and it seems to be going OK. But, watching her actively suffer brought a new level of pain to our hearts, and new questions to our mind.

My first instinct is to skirt these questions, not wanting to put them in print. But, to be true to the title of this posting, I’ll touch generally on them. Tears flowed as we wondered aloud, for the first time together, whether still being here is the best thing for Abbie. Our hearts’ desire is for Abbie’s best, and we wondered whether we are being selfish in desiring so strongly for that “best” to be manifested here. Listening to her cry in pain, we wondered if an immediate release, on the day of her accident, would not have have been better, more compassionate, easier. I am so profoundly grateful for all the past three years have given us: finding out she has her Daddy’s curly hair, seeing the unshakeable love of her brothers, watching her persevere with smiles and dimples, and much, much more. What I rest on is that just as God has given special grace to Ray and I to walk through this season, a grace that I cannot explain to those who’ve not yet had to rely on it, God is giving Abbie a special grace that even I cannot comprehend. For me, this is a new level of trust in Him — it’s much easier to trust Him with my own suffering than it is with my daughter’s. But, after an agonizing weekend, I find myself in this new, deeper place with confidence settled well into my soul. I cannot always hold her, soothe her, help her…but He can.

Part of the painful series of conversations led us to the conclusion that it would be good for Abbie to go to school this fall, if we can get her into the right school. There is one near our home that would be terrific for her, but it is not in our home district. She was very excited about the prospect of going to school when I mentioned it to her on Monday. On Tuesday, she was agitated around lunch time. I took a guess, and was right…I said, “Oh, Abbie, I didn’t mean school would start today, it will start in the Fall, after you are six. But we can still go to school on Fridays during the summer.” This thrilled her and ended the fit. Please pray for favor in this area — we did not have a good experience in our first go ’round with the Dept of Ed., and really want a different outcome this time.

This has been a week of sadness all around us — funerals, dying, despair…we are pressed but not crushed, persecuted not abandoned, struck down but not destroyed…I will never be able to express my gratitude for the hands that carry us when our own feeble strength fails.

Blessed is the man who trusts the LORD
and whose trust is the LORD,
For he will be like a tree planted by the water,
That extends its roots by a stream,
And will not fear when the heat comes
But its leaves will be green
And it will not be anxious in a year of drought,
Nor cease to yield fruit.
— Jeremiah 17:7-8

Check-up

A nice, boring trip to the pediatrician yesterday ruled out anything acute that could be contributing to Abbie’s current trials. Actually, in many ways she is doing great. Her oxygen needs have been about zero, while staying at 98-99 through the night, her heart rate stays around 90 even when awake, with 130 her new “I’m ticked off” number. 160 used to be the point at which we knew she was mad. She is maintaining her weight, even though she hasn’t had her normal diet in almost 2 weeks, and her strength is increasing each day. Go figure. Just makes me think of Daniel and his friends who, trusting and honoring God, grew stronger on vegetables than on the bounty from the king’s table.

Dr. L. even got to see Abbie being naughty. As we picked her up off the table to put her in her chair she straightened out her whole body, which elicited groans from us and a huge grin and dimple from her. “Board Baby” is one of her favorite tricks, and we all all laughed at her amusement, and the show of her personality. However, today when getting her off the potty Debbie warned her that if she did that, she may drop her and then they’d never get to have a sleep over. Limp as a noodle! Debbie said, “Don’t tell me that girl doesn’t know what she is doing and what she wants!!”

I will be orienting a new nurse tomorrow — always a little challenging to try to be comprehensive without overwhelming, and to welcome yet another person into our lives without appearing weary.

If you would, please just lift up some specific prayers for Abbie (some are a bit mundane,and some are quite audacious):

— Femurs to regain normal shape and move back into sockets (that’s in the second category)

— For all the parts of her brain to communicate and work together; for regrowth, reconnection and renewal.

— For ever decreasing muscle tone and increasing strength.

— For her to always know how absolutely she is loved and cherished, and for there to be joy in every day for her.

And, speaking of prayers for little girls, could I ask you to also pray for Abbie’s little friend, Mia? She is Jim and Remle’s daughter, and is very much a Daddy’s girl. Please pray that even at her young age God would grant her supernatural grace and comfort as she faces the possibility of her Daddy going to Heaven soon. Pray that she will sense God’s protection and refuge in a palpable way as she loses the most tangible provision of these in her life. I guess, as a mommy, I just don’t want her heart to break, but as a child of God I know He is very good at keeping all the pieces and making something wonderful and new with them.

Ocean Girl

This update truly deserves an accompanying photo, but I can’t find the wire to download my pictures. So, I will try to paint the scene as well as I can. On Saturday Abbie and I were out on the ocean together, feeling the swells, the spray and the wind. She was giving commentary as I wept. We were riding in an outrigger canoe paddled by five strong men whom I’d not met before that morning. Sometimes the sweetest gifts come from strangers. We watched a kite surfer, we talked about the island we paddled near, we watched surfers paddling out to the big waves…Abbie doesn’t have the chance to do many fun things just for the fun of it, with no therapeutic angle in mind. This was a rare and precious time for us, and without thinking about therapy, I think the ocean provided some of the deepest renewal we’ve had.

Pure Light is a non-profit organization that grew out of a ministry whose goal is to get special needs people out on the water. There was another man in a wheelchair, Kyle, who is a regular. His angel of a mom was well-prepared and let us borrow his seat for Abbie to ride in and his mat for Abbie to change on. There were teenagers there from different schools, as well as folks from the state institution who look forward to this day each month. It is always so overwhelming for me to see the hearts of volunteers who may never truly grasp how deeply they are blessing those they help. It is difficult to describe the special love that is “aloha”, but we were filled to the brim with it as we left the beach park. To see Abbie’s hair wet with sea water, sand on her toes, and grins on her face brought smiles to Ray’s face, the likes of which I haven’t seen in a very long time. You can bet we will be there next month! And, I will post the pictures soon.

As for what else has been going on during this interim between postings: ups, downs and all-arounds. It seems that Abbie is going through another prolonged healing spike. She has not been able to tolerate her normal feedings for over a week now. Her voltage is very high, which is a good thing, it just makes her feel terrible. The new aspect of this spike is her skin turning blotchy for no apparent reason. It resembles her allergic reaction to latex, but it is not. Sometimes it seems to coincide with frustration, emotional hurt or physical pain. At PT on Thursday I was describing her medical history to an intern, and she got all splotchy, even though I was covering her ears as I talked about her initial injury. Yesterday she was in pain most of the day, to the point of being inconsolable for a couple of hours. Hard on our hearts, to say the least. I am taking her to the pediatrician this afternoon to check all potential sources of pain, so that I don’t miss something.

In the midst of all this physical turmoil for her, however, she continues to surprise us. She had an assessment at the University on Friday, to meet the grad student who will be working with her this summer. When you have a special needs child “assessment” normally means, “prepare your Kleenex, because your heart is going to be stomped on again.” This day was much different, however, as Mindy skipped over questions that obviously didn’t apply (many about motor skills), so we ended up focusing on what Abbie can do and what she does understand. Being able to answer “yes” to questions, and talk about capabilities rather than deficits was satisfying and motivating at the same time. The best part of the assessment time, however, was what Abbie did…she sat up for an entire hour, by herself, in between my legs. I would occasionally rub her back, and must admit I did some PT while sitting there, moving her body side-to-side to see if she would keep her head in the right position (she did). But, she was resolute in doing it herself. We used to count the seconds, and then eventually the minutes she could sit up by herself. I am amazed at how strong she is, especially given all she is going through right now!

There’s so much more to tell, but honestly my heart is too heavy to write more today. Please pray for my dear friends Jim and Remle, as they enter a new phase of Jim’s cancer journey. (www.pray4jim.blogspot.com). They now have home hospice, but please pray mightily for Jim’s comfort and pain control. Pray that God would keep them in perfect peace as they keep their minds steadfastly on Him (Is. 26:3). Although we cannot know the mind of God, and I am not sure I could understand what reason would be good enough to take a Daddy away from a beloved son and daughter, and leave a young widow…we can always know His heart. He loves deeply and perfectly and desires the best for us, even when the best is beyond our comprehension.