All:
It has been several months since Kathryn and I updated everyone on Elizabeth. I am quite sure many of you were glad to have the repreive of having to read my overly wordy updates on our youngest joy, but much has happened since our last visit and it merits an e-mail. First and foremost, Elizabeth is doing really well and continues to simply astound myriad doctors, therapists, nurses, and caregivers. She is apparently ignoring the learned diagnoses and just plugging along as she sees fit. Kathryn and I are convinced that she and God are just laughing it up at us silly adults trying to explain the inexplicable. I know she takes a good bit of joy in just doing what she should be doing. Every day is a new glimpse into the simply perfect creation she is, and the indescribable faithfulness of God in giving us this miracle. She rocks!
Kathryn and I also wanted to express again how humbled and honored we are to have such a strong and valiant group of people praying for Elizabeth. We have felt the strength and peace of those prayers, and are so thankful for them that we cannot accurately express it. Elizabeth has been lifted up from the beginning and we thank you all for that. Adding to this overwhleming support, Kathryn and I have been amazed at the width and breadth of this beloved group of persons. Elizabeth and her unique story has been told to so many who we do not know, and we frankly rejoice for that as her story is ultimately and basically one of the wonder and perfect power of God to show Himself in the most basic of things and exhibit His perfect and unfailing love in ways one would never expect. What an awesome little vessel to show the power of God. Each of you has been so essential to this. We thank you deeply and truly. It is not enough, but it is fully heartfelt.
Elizabeth is three and half months along now and is growing "like a weed", as Michael likes to say. Kathryn and I have been borderline obsessive/compulsive about feeding her and making sure she has all the nutrients she needs to grow. I swear that if you asked me six months ago if I would be obsessing over high-caloric formula and proper additives to increase intake, I would have laughed. We have basically been carbo-loading sweet Elizabeth to get her weight up and turning the corner. (It is the exact opposite of what I am trying to do with myself...Ironic.) She is tipping the scales at about ten pounds and Kathryn and I beam like Don King at every weigh -in. (My hair is also starting to resemble that...) Of course, since this is still Elizabeth and the lifetime struggle for control and power has begun in earnest with her, she does horse around with the bottle at every feeding a little bit to make sure we are paying attention. Kathryn is on it and has tried to stop that. She's a wily one, that Elizabeth.
Elizabeth loves to kick around and move. She is not still and quiet! Based upon the pre-birth assurances of the medical team that she would have low muscle tone and not be very active, we beam with pride when she kicks for hours and proves that little assumption wrong. She adores her brother and sister and, frankly, we are starting see the three of them formulating new ways to team up against Kathryn and I. Caroline is our little mother, embracing her role as planner and observer of all things Elizabeth with gusto. She watches her like a hawk and takes no small amount of pride in telling Michael when he wanders too close or needs to back away. The girls have a special bond and Caroline is constantly picking out her outfits and deciding what she might need to know about for the day. Elizabeth takes the orders well (better than I do!) and even seems to be relaxed while Caroline opines on the wisdom of library book card use or the necessity for the family to purchase Command hooks for her room. Michael is Elizabeth's buddy. She can be reading us the riot act and when his little curly head walks in she calms down and coos. He loves to get in her face a bit and pretend to be hurt when she punches him. He has songs for just her and loves to cuddle with her. He wants desperately for Elizabeth to begin to eat Oreos (as he thinks these are heaven!) and is schooling her in the greatness of Buzz Lightyear and Wii Resort. They are a dynamic duo, for sure.
Kathryn and I have been so thankful to see the kiddos forming a family unit around Elizabeth. She recognizes them clearly and can track things better than Lewis and Clark. All of these "milestones" are things we are so blessed to have experienced with Elizabeth. We continue to be amazed at God's provision for us and His winks at us with her development. Elizabeth is a wonder and we enjoy learning about her together.
A couple of weeks ago, Kathryn and I experienced a little "gust of gravity" as I like to call it. Elizabeth was going to her geneticist and started to have seizures in the lobby. We knew that this was going to be an issue eventually, but we had no idea that it would manifest itself so quickly and without warning. Put simply, beginning that morning Elizabeth started to have major seizures about every hour. I cannot think of a more terror-filled and helpless feeling than having to watch your little baby have a seizure and know there is nothing you as a parent can do, except hold her. Kathryn and I got a lot closer to God that day. We basically spent the day holding Elizabeth and praying constantly. Thanks to our crack team of wonderful doctors, lead by a wonderful pediatrician who is a blessing from God, we immediately began the process of figuring out what anti-seizure medication to put her on to control them. But, this required consultation with Elizabeth's pediatric neurologist and that took time. They worked hard to get the medicine to her, but simple logistics caused the wait to be about 36 hours before the right prescription was determined. That 36 hours was a huge test for Kathryn and I, but more importantly, it was a wonderful time of blessing. I know it sounds wierd, but God knew that we all needed that time to be with Elizabeth and learn some lessons. In these gusts of gravity, I am convinced that how you orient yourself will determine the outcome. If you are caught leaning back, you will fall on your butt and curse the situation. If you are leaning forward, you will fall to your kness. And, that is where you need to be. The lesson is there to be learned, but you've got to open yourself up to it. So much of our lives are spent walking like normal...regular gravity keeping us secured to the ground...and we begin to forget that a simple force is holding us to Earth. That's why I like the description of a "gust of gravity"...sometimes we are pulled down by an unexpected weight and God wants to see our reaction.
Anyway, during the 36 hours, Kathryn and I would take turns holding Elizabeth and watching her sleep between seizures. (the seizures had a sedative effect on her). So, we both got to experience a time of peace hourly interrupted by a time of intense activity. We used this time to just encourage Elizabeth and tell her we loved her, and to pray for her and over her. There was nothing else we could do. For us Type A "fixers" that was highly frustrating. But, God knew what He was doing. He gave us this time to frankly show Caroline and Michael how Elizabeth had been made and how to react to a scary situation. Caroline is our worrier. She is a sensitive soul and likes to "marinate" in fear. Kathryn and I were so worried about how to broach the subject of seizures with her for fear that she would be justifiably scared by them and react accordingly. But, God presented us with the very thing we feared with no warning, so we just had to buckle down and present it to her. And, dear friends, God just laughed as our Caroline walked up and amazed us. Elizabeth was having a seizure and I was holding her. Caroline walked up and put her hand on Elizabeth's arm and, without prompting, stroked her arm gently and said, "It's okay Elizabeth...it's okay. We love you, Elizabeth!" in the most comforting voice I have ever heard. She was not scared or excitable--intimidated or worried--she just knew that she needed to encourage and support Elizabeth. Caroline amazed me right then. It then gave me the opportunity to talk to her and Michael about the fact that God had made Elizabeth uniquely and that this was part of who she was. It was nothing to be scared of, and they were just to get us if she decided to have another "spell". A horrible and frightening situation became a beautiful teaching moment for me and a humbling acknowledgment of the strength instilled in my seven year old girly girl. So, in that way it was a blessing. Also, it gave Kathryn's and my parents the opportunity to see the situation and what to do if something should happen. While I would never wish this on anyone nor want to experience the terror again, I thank God every day for that time. It was a gust of gravity and we were forced to fall to our knees. A beautiful moment that exhibited terrror and joy in equal measure.
Elizabeth is now on anti-seizure medicine that is working well. She has not had any more seizures since going on the medicine. She is alert and active and back to her old self. While that was undoubtedly a hard week, it was a joyous week, too. It re-instilled in Kathryn and I the comfort that God is in control and watching over all of this. We were reminded that He knitted Elizabeth together exactly as He wanted and that she is ultimately His child. She is an amazing witness in her young age of how reliance on our fragile and human understanding can blur the blessing. Faith is a funny thing. It is interminably hard and cannot be understood by my simple mind, but it is a way of letting go of the strangehold of control a bit and relying on an unseen force to take the wheel. When explained like that it sounds crazy, but I can say it is also absolutely essential to Kathryn and I. Explanations are fine and nice--a pretty box to place our situations in--but God, for some inexplicable reason, has chosen to allow Elizabeth to work outside those explanations and be a testament to the wonder and glory of her Creator. Kathryn and I do not deserve this blessing, but we are doing our best to let Elizabeth shine for the world to see and attempt--though futilely--to explain the inexplicable. So, humor us if you have heard the story we are telling, sometimes we just feel compelled to say it.
The lessons in all of this are myraid and multi-layered. But, Kathryn and I know that we are being shown how to rely on faith while seeking knowledge and assistance from the best we have to offer. We crave an answer when really the questions may have just begun. In essence, the answer is not in what Elizabeth has or is diagnosed with-- it is in thanking God for the gusts of gravity as well as the updrafts of joy. It is appreciating the gift of every day and resting in the knowledge that there is a greater cause. If it takes a beautiful, strong and unique three month old girl to do it, more the better!
So, that is where we are today. We are happy and blessed and honored. We treasure each of you more than you can know. Sleep deprivation and a little bit of stress may have caused us to look as if in a daze, but I promise that we are sane--most days! Sorry for the length of this, but apprently Caroline gets her loquaciousness from her dad...
Matt
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