"Call unto Me and I will answer you and show you great and mighty things."
Jeremiah 33:3
It has been a very medically "stable" time over the last couple of months for Elizabeth. That is such a blessing, considering the previous two and half years have been pretty dramatic and busy as we learned how to treat and understand this wonderful and unique creation that God has given us. It takes a slower, quieter time to really appreciate the breakneck speed we had been going with Elizabeth. We have been allowed the opportunity to let go of the stressful grip of just "hanging on" and really begin to appreciate the wonderful journey of our lives together. Now, before you all begin to think that we've been churning butter and whittling wooden figurines as we whistle away the day, let me paint a brief picture of Rowan "slowing down and appreciating the journey": Elizabeth gets physical therapy (with the amazing Bo!) three times a week, she has been fighting a chronic set of double ear infections over the winter that have prevented her from sleeping any extended period of time and also makes her not want to swallow food (or anything for that matter!), she got ear tubes to fix the previous problem, lost her voice twice because of congestion and coughing, manifested some frankly wierd seizures over a week, and has been cutting her molars all at once. But, other than those little things, she has been awesome! Those listed things are truly so minor in the greater scheme of Elizabeth's stuff that we don't consider it much of anything.
More important that any of that, this has been a beautiful time of Elizabeth feeling "good" and letting her amazing personality shine. We have just loved (and said many prayers of thanskgiving for) these months where the "Diva" has been in full residence and her personality has been on display for all to see! No one can ever accuse her of being lacking in the attitude department. Over the last few months, Elizabeth has started to really vocalize herself. Her sign language stuff is still VERY present but she has found her voice, and has enjoyed figuring that out! She is becoming more creative with her vocalizations and has been putting on quite a show for anyone to hear with her new sounds and "words".
Now, this last part is a bit surprising as we have heard from tons of doctors and other experts that Elizabeth's brain is not built to really be able to formulate speech. It was said that it was highly unlikely that she would ever talk or even communicate via vocal sound. However, as is becoming our norm, Elizabeth and Her Creator obviously had a very different plan. Daily, she "says" things to us that we all understand. When someone enters the room where she is, and has the audacity to not immediately say hello to her, she decides to become the bigger person and clearly says "Hi" to them. (The Diva in her is always present!) She also uses "hi" as a call to Michael and Caroline if they are running around the house and are not coming close enough to her. She will not be left out of their play! It is unmistakable and glorious. She also has made up a word for Caroline and Michael. They are "aboo". No idea why or what that means, but Elizabeth is very clear when she wants to see her "aboo". She will call in a loud and unmistakable voice "aboo!" when she hears them upstairs and needs to see them. What is even more awesome about this is that Michael and Caroline are very aware that this is their collective "name" and they respond immediately! That is impressive! Kathryn and I cannot ever get such quick and respectful attention to our requests! Often, as the kids are playing and laughing and talking and squabbling around Elizabeth, she will chime in with a sound or noise that is equal in timbre and volume as the goings-on around her. She is clearly and unmistakably participating in the conversation (or fight) and will not be silenced! She coos and gurgles like any baby, but sometimes when she gets riled up about something, she will let you have it and will obviously be saying something (sometimes even long stretches of something) in her language like any other participant in a conversation. We love it. Recently, she has even taken to having conversations with whoever is holding her at any given time. As her grandparents (and her beloved Miss Margaret) can readily attest, Elizabeth is at no loss for conversation if she has something to say. And, while the "words" may not be easily understood, her tone is unmistakable. Take that, doom and gloom-ers! There's much more to Elizabeth's brain and intelligence than what the tests show. God, her loving and ever-present cheerleader, is allowing Elizabeth to show in unadulterated clarity that there are simply untold layers of surprises that she will continue to show us. It shows us that she will not be limited by a diagnosis, and that her "words" can speak volumes about the grace and hope that God provides to everyone.
We have seen the effect of Elizabeth's testimony in some pretty neat ways over the last few months:
1. Caroline is Elizabeth's "second mother" and takes much pride in taking care of Elizabeth. She constantly holds her hand and talks with her, helps Kathryn or I feed her, holds her and generally loves being a big sister to her "Lee Lee". Caroline is remarkably strong and has really embraced Elizabeth's situation with a maturity and clarity that we frankly wish others three times her age would employ. She does not back away from the hard realities of Elizabeth's situation and sees Elizabeth for who she is, not what she wishes Elizabeth could be. I admire Caroline more than she knows and we can learn a lot from that nine-year-old on how to handle tough medical realities. She does it with grace and a smile. She loves to play teacher and store, and her best student/customer is always Elizabeth. When E gets to go up to Carolline's room to play, she is so excited she can barely contain herself. She kicks and smiles and lets out little screams of excitement. (It may help that Caroline always seems to give her an "A++" on all her work and lets her hold the pointer!) It warms my heart to see the sisters playing together. It is that slice of normalcy in a very abnormal situation that makes me love how God has provided for us in this. (On a side note, Kathryn and I prayed three years ago, while E was still in the womb, that she would be able to have a wonderful, deep, meaningful relationship with Caroline and Michael, and to see this prayer being lovingly and simply answered in such a unique way only solidifies my amazement in the wonder of God's wisdom!)
Anyway, one day, Caroline came up to us and said that she had been thinking hard about something and she really wanted to grow her hair out and get it cut for Locks of Love, which makes wigs out of donated hair for kids with cancer. I felt my heart getting caught in my throat a bit, as I looked at Caroline--the look of intense determination on her face--and saw that she was absolutely adamant about this. She then said that it wasn't fair for kids to have to lose thier hair because of cancer. She wanted to give them her hair to let them have a nice wig. Plus, she said, she wanted to do something for kids who needed help. "I would want other kids to do that for Elizabeth if she needed it." Kathryn and I were so proud of her--coming up with this on her own and finding a way to give back to other kids. This sprit of helping--this charitable drive--was another way that Elizabeth's story--and her profound effect on each of us--has helped form our sweet Caroline into the caring, young lady she is. Caroline acted like it was the most logical thing in the world. And, once that little lady makes up her mind, she simply does it. So, about three weeks ago, Caroline went in and got 12 inches of hair cut off and she never flinched about it. She was excited and told me afterward, "That made me feel good. I'm going to start growing it back out again to do this next year!" So, it looks like we are now hair farmers for Locks of Love!
Here are the before and after pictures:
2. The next example comes from me. As I said, E's ear infections were causing her to not sleep. This meant that Kathryn or I would have to hold her upright and sleeping on our chests to let her get any rest. (Every parent of a kiddo with ear infections knows this position very well!) In my case, I can't sleep when I'm holding her like this, so I stay up and watch the very thin offerings on TV between 3 and 5 a.m. After several nights of this, I began to have a pretty huge self- pity party. I was so tired and sleepy. Why couldn't E just have it easy for a while? Why did she have to hurt so bad? It just wasn't fair. I just need to sleep...blah, blah, blah. I was a big ball of fun, let me tell you! As I looked down at her, throwing mental confetti at my "Woe is Me" Fiesta, I was struck by something... You know, God gave Elizabeth a simply wonderful gift. He gave her a lack of self-pity. If anyone in this little scenario should be feeling sorry for herself and wailing about the obstacles set in front of her, it would be my sweet E. Her brain is underdeveloped. She is severely developmentally delayed. She can't (and most likely won't) ever be able to do many of things her beloved siblings can do. She needs constant care. She has medical conditions that teams of highly specialized doctors know absolutely nothing about. She is tested, poked, prodded, and studied in withering detail. She fully and completely relies on all of her caretakers for every aspect of her day. And, on top of all that, her ears hurt! If anyone could be and deserved to be throwing a Pity Party for the Ages it would be her. No one would blame her. And, yet, God created our Divine Miss E in the complete opposite mold. She has absolutely no concept of feeling sorry for herself. That simply is not in her broadening vocabulary. God made her perfectly, and He made sure she wouldn't ever go to that "well of worry". That is unbelievably cool.
Elizabeth is the happiest child I know. She loves everything about her day. Even physical therapy (which can be very hard) is something she enters into with a grin and squeal of delight. Now, she will let you know if she is upset or finished with a particular "experience" in no uncertain terms--(she is still a Diva, after all!) but her personality is simply not wired for worry or self-pity. She takes each circumstance as a fun experience. She greets each situation with a smile. She is excited about every single moment. Now, some would say that her attitude is due to her underdeveloped brain and systems. I say that those people are sad and close-minded. It is because her Creator decided to give her a wonderful gift. The gift of blissful, unfiltered joy. We could all learn something from that. We should all strive to approach each moment as Elizabeth does. It is not silly to shrug off worry. You aren't being naive to push away self-pity. In fact, it is my opinion, that such actions show amazing wisdom and prescient intelligence. Because, really, what is worry anyway? Just a waste of effort when you could be enjoying the moment. (And, yes, friends, I am preaching most passionately to myself on this!)
So, as I held E and thought all those thoughts, I felt that God was once again pushing me to learn from my youngest daughter. It is my deepest hope that I can get to a point in my life where I sleep with a small grin on my face and not a worried frown. Just then, I saw Elizabeth wake up a bit. She squirmed and grunted, obviously needing to reposition herself. Plus, Daddy was being silly again and disturbing her nap. She flashed me a glance that unequivocably said "Come on, Dad! Get over it. I need my sleep here!" and then apparently thought better of that and gave me her smile. I smiled back, and then she said, "Didi". At that moment, I knew exactly what this new word meant--Daddy.
With that one small word, all the balloons at my party popped, all the sad streamers were cleaned out, and security arrived to kick me out---this self-pity party was very much over! This precious little girl was moving forward, gleaning everything she could from the upcoming moment. Refusing to rest on what had happened, but looking with clear happy eyes at what was to come. She was using her beautiful brain to come up with a name for this silly guy that always holds her and thinks too much...Didi. And with that achieved, she then moved on and now calls her wonderful, beloved and amazing Kathryn "mama", too.
It's funny how those two little milestones that every parent longs to hear--a child calling out it's parents' names--are so much more meaningful to Kathryn and I because we never expected to hear it from E. We didn't ever think it was within the realm of expectation for Elizabeth to do that. Which is precisely why God allowed it to happen. He knew that we needed another little glimpse at the truly miraculous way He formed Elizabeth to remind us that our wells of worry were silly, meaningless and powerless. That He is in control here and that all He longs to hear from any of us when we are facing tough times is-- "Didi".
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So, we are doing very well here at the beginning of 2013. Elizabeth continues to progress with a bold and wonderful zest for life. We tackle each day as it comes and praise God for the opportunity to be able to share-- in some small way-- the amazing story of a girl who beats the odds and her Heavenly ""Didi" who shows His wisdom and grace in every new event we witness.
Thanks for all your thoughts, prayers and kind words. We are blessed beyond words!
Matt, Kathryn, Caroline, Michael and Elizabeth Rowan
