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.