A Memorable Weekend

Our family spent a wonderful long weekend on Maui, with a couple of special highlights for Miss Abbie. The first, as you can see above, was her getting a chance to swim with her Daddy.

I was a little concerned about how she would react to the cold water, but as you can see…she loved it! She grinned the entire time she was in the pool, and so did Ray. My smile was pretty broad, as well.

There was some serious love flowing from Abbie to her Daddy, as she made googly-eyes at him. She especially enjoyed when he pretended to be her motor boat, and sped her around the pool.

The travel to Maui could not have gone any smoother, the weather was beautiful and the hotel was lovely. It’s amazing when you can feel yourself being blessed as it actually happens. God gave us one giant sabbath to rest and recover, and it has worked wonders.

The other thing that amazes me sometimes is when other people view Abbie through the same lens I do, especially when they are strangers. The day we were leaving we spent the morning hanging out by the pool. A man named Mark walked up with his 7-year-old daughter, Brooke, because her interest had been sparked as they walked by the handicapped pool lift and then saw Abbie’s wheelchair. So, they stopped by to say “hello” to Abbie, and ask just a few simple questions. They were so kind, and Abbie loved having a girl to chat with, even for just a few moments, since she was utterly surrounded by boys all weekend.

A while later, Mark and Brooke came back, with Brooke bearing the gift of a cute little penguin water toy for Abbie. Mark started talking directly to Abbie saying, “You know Abbie, when Brooke and I got in the water we started talking a lot about you. We decided that we see a lot of courage in you, a whole lot of courage. And, that you help take our fears away.”

I was stunned by his choice of words, because not only is that what I see in Abbie as well, but from the beginning the Lord has been using this whole journey to rid me of every fear except the fear of Him. And, I was so thankful that Mark chose to speak directly to Abbie, and to acknowledge her so powerfully.

I am so thankful when God sometimes uses real people to speak real words that I can really hear. Below is a picture of Abbie, and her new friend, Brooke.

Validation

This past week brought me two types of validation: the opportunity to validate the amazing precision of Maria Margarita’s work, and the chance to have professionals validate the fact that Abbie is reading. What a wonderful week!

First, to our dear Maria. In our session last Tuesday she began working intensely on Abbie’s chest. In the midst of her work, she paused, looked up at me and said, “There was some trauma here, on the left side of the trachea, caused by the initial intubation, I believe. It is affecting her pericardium (lining around the heart), the pleural lining (around the lungs) and the diaphragm. All of those connective tissues just clamped down after the shock of the injury and then this intubation trauma”

I was speechless. There was NO way she could have known that Abbie’s medical record describes the ET tube being improperly positioned just a bit when the paramedics placed it, and it having to be repositioned in the ER…causing some trauma to her trachea.

As she continued to work, Abbie’s chest broadened out below her thorax and she began to engage her diaphragm in breathing. Abbie has had a much better week overall in the respiratory department, and I know it’s because of Maria’s work. There is a slight trade-off, though. After working hard with Maria, Abbie always has a lot of “junk” to dump out of her body. So, on one hand she’s breathing much better, but on the other there are times when I am constantly, and joyfully, suctioning.

Maria then did some very deep work on Abbie’s brain. I sat, with two neuro-anatomy atlases at the ready, so that I could understand where they were working. At one point they were working on the Thalamic Nuclei (another thing I’d not heard of before). The precise area they were working on projects into the frontal lobes, where Abbie was wanting to do a lot of work that day…it all fit together. I have 3 pages of notes from that session, but I won’t include it verbatim here. If you are a brain injury parent, please feel free to contact me for much more detail.

It may sound strange, but Abbie guides Maria to the places in her brain she wants to work. There was one very specific point that Abbie was insistent about, but didn’t make sense to me because it was near her right eustachian tube. As far as I know, hearing is the one faculty we’ve not had challenges with. Maria called me later that night, from the medical library. The point Abbie had insisted she work on was so precise that normal anatomy texts didn’t describe it fully. Maria was amazed to find, in the medical text, that the specific point was a key intersection of many cranial nerves (and other important structures that I forget at this late hour.) She just laughed and said, “That little girl is going to grow up to be a brain surgeon, because her knowledge of neuroanatomy is so precise!!”

Maria will see Abbie again tomorrow, and in accordance with Maria’s request, I have gotten copies of Abbie’s MRI for her to look at. Taken 3 days after Abbie’s injury, those images are burned in my mind forever, along with the Lord’s whispered words, “It has to be this bad.” I haven’t looked at them since that dreaded lightbox conference in the PICU. Brimming with my newly-acquired amateur neuro knowledge, I held some of them up to the light tonight. They still make my stomach turn. A perfectly-formed brain just devastated by injury. But, I am curious what Maria will think of them tomorrow.

The second form of validation came today at Abbie’s intake interview for the new semester at the University of Hawaii. We met our new student-therapist, April, who was accompanied by our long-time therapist Lisa. Towards the end of the session, I mentioned that Abbie is learning to read. I took her flashcards and books to the session, in case they wanted to see them.

Lisa and April said they’d love to see how Abbie reads. That’s when the knot in my stomach formed. I can feel the breeze from the nodding heads of every brain injury family as I say, “Consistency is not our thing, ” and what she can do one day, she might not do again for weeks. Rats. I had told them she could read, so now it was “put up or shut up”. Plus, Abbie was using a new different switch, so I didn’t know if that would throw her off.

I got out the original five flashcards that she first mastered in November. I don’t know why I chose those, since she hasn’t looked at them much in the last six weeks. But…she did GREAT!! She didn’t get them all 100% right each time, but she was engaged, and was able to get most of them right. This great accomplishment by our little smartypants dictated her goals for this semester….LITERACY!! We are going to work reading into as many activities as we can. I am thrilled because Lisa was the first professional to see Abbie actually read. I am glad it was her, because she has been with us since the PICU, through the long days of hoping for any communication at all, and now to have her see Abbie read was a victory for us all!

These days are sweet indeed, but I could use your prayers for more sleep. I mentioned the times of constant suctioning above, and they tend to cluster in the nighttime hours. I have been getting very little sleep for the past several weeks, and it is really beginning to take a physical toll on me. I feel like an old, cranky zombie and I imagine my family would concur with this self-assessment.

But, most of all, even (or especially) during the night watches my soul just sings praises to God. Sometimes for what He is doing for Abbie, but lately I have been especially overwhelmed by the fact that He calls me “friend.” Can you imagine…the God of the whole universe would stoop that low, and lift me that high? Perhaps it’s because I can’t really wrap my mind around the realities involved with Him being my Saviour or Redeemer, but Friend…I can grasp that one, and will never fathom why He would choose me for one. I am just so utterly grateful.