What a year it has been. It has no doubt been a year of uncertainty, hope and anticipation, as well as year of fear, grief, surprise, and joy.

And those questions I asked a year ago have, for the most part, been answered. We know, in general, what is going on in Grayson’s body, although we never know what symptoms will manifest each day and if we’ll spend that day going to a playdate or checking in at the ER.

We now know that Grayson’s life on earth will probably be shorter than most, but we pray for as many happy, pain free years as possible for our little guy. We know his future may consist of more surgeries, hospital stays and doctors appointments, but know it will be filled with love, hugs and kisses, music, and family.

No, Grayson will most likely never walk, but we aren’t ruling out the possibility of miracles. Walking, talking, and all the other milestones that seemed so huge a year ago are barely a blip on my radar screen now. I just want him to be here. And happy.

And yes, we will have more children (at least one, anyway)- that question answered in late May. It wasn’t exactly answered the way we planned it would be, with careful analysis of genetic testing and possibly medical interventions to ensure a healthy baby, but we are trusting that God knows better than we do what’s best for our family.

Baby C will be here soon- very soon. I’m 35 weeks pregnant today. I alternate between such conflicting emotions, sometimes within the same breath it seems. I’m anxious and well, terrified, of taking care of Grayson and a newborn at the same time. I’m so excited to hold and cuddle this little one on the outside, but also know I will grieve not being pregnant. I want to know if we’ll be bringing Baby C home in pink or blue, and how Grayson will accept and relate to his little brother or sister. I won’t have to wait much longer for those answers- 5 weeks or less!

2012 taught me to live intentionally, with a plan, but flexibly, because plans always change. I’ve learned to question everything, especially related to modern medicine, because doctors are human and don’t always recommend what’s best for my family. 2012 reconfirmed over and over and over that people care, and that they pray, and that they are so generous. I learned a hard lesson in 2012 that sometimes the decisions that are right and are best are often the most difficult to make and live with. And 2012 taught me the words stamped on a bracelet given to me by a precious friend for Christmas are in fact, true. I am “stronger than she thought”.

I look forward to 2013 with mostly optimism and hope. We’ll be in a new house soon, a fixer-upper that we plan on truly making a home for our little family of four. Grayson is stable and happy right now, and for his sake, I hope that medically he has a calm and uneventful year. I hope that even as my life gets exponentially busier and more complicated, I can continue to foster relationships that have become so dear to me in 2012.I work so hard at my role as mother, but I want to be a better wife, daughter and friend and give back somehow to those who have given me so much.

And Santa brought him because…????

Santa’s annual letter to Grayson (2010 letter and 2011 letter).

Dear Grayson,

Once again I am writing to  you on the evening in which the world awaits the birth of a child. That goes double for you, about-to-be big brother

Waiting is hard, isn’t it? I know you are also waiting for what your new house will be like and what the New Year will brings We all hope for a bright future, but right now we can’t see it because it’s dark. The nights are long, the candles are small, and it’s hard to know where we are going. As they say in the movies, we’re 105 miles from where we want to be, it’s dark, and we’re wearing sunglasses.

I know it’s also tempting to not want to see what’s coming- to keep the lights off and the sunglasses on. Nobody wants to see seizures, surgeries and hopeless diagnoses, much less live them. Nobody wants to wait on the next appointment to go through the motions of guessing at what can’t be known.

And so we await the birth of a child.

Grayson, the child we welcome tonight was born in the dark, far from home, into a world that also had nothing worth waiting or even hoping for. That is exactly why he came. This child did not just bring light, He is the Light. He came for those who need Him. He for, and because of, you and your family. We know that because he told us. Blessed are the meek, he said. The last shall be first.

Tonight my sleigh is loaded with all sorts of toys, gadgets and books. I chose them to delight children’ all over the world, my profession and my honor. One or two of these presents are for you, but I know that your delight is not in things that come wrapped in paper. Your delight is that you are the model that the Lord of the Universe lifts up to us. The child we wait on is just like you. To you is promised the kingdom of Heaven.

It’s still dark, and we don’t know where the coming year will bring us. I do know that I will be back, next time for two Baker children. (I already have your new address in my computer). It is my great joy to look in on you and your family, because in seeing you, I am seeing the promise that is so much worth waiting for.

Love,
Santa

I haven’t felt much like writing this week- it just didn’t seem right to talk about either good or bad things happening in my life right now, when so many families in Connecticut are suffering the worst kind of horror, and right before Christmas. Yesterday I read about one of the little boys who was murdered; he died in the arms of his teachers aid, who was trying to shield him from bullets. He was a special needs child. I can’t get that little boy out of my mind, and I cry and pray for his family, even as I hold my own little boy tight and witness the love and adoration he has for his own teachers.

I will write soon about some major things going on in our life, but right now I just don’t feel right doing it. But I do want to take time tonight to say a huge THANK YOU to everyone who has blessed our family this Christmas season. We have been given so much and are overwhelmed by the generosity of our family, friends, church, and people we don’t even know. I keep saying I wish I had better words to thank you all adequately. 2012 has been an incredibly difficult, stressful year, but it’s also been a year of incredible blessings.

Thank you to all of you who have wrapped our family in love and have given us so,so much more than we deserve or could ask for. Merry Christmas!

Love,
Elizabeth, Ryan and Grayson

I’m sitting on my couch, watching CNN, getting more and more angry about the events that unfolded today. It’s senseless. I have no good words, only rambling thoughts.

Grayson has been having some weird neurological stuff going on the past two weeks. He’s had 3 full blown seizures, plus some what we think is seizure activity making his body jerky and restless. None of it is life threatening itself (we hope) but is just another reminder that he is sick. I don’t often let my mind go to the place where I wonder how long he has to live on earth, but unfortunately, that question is part of our reality.

I had an OB appointment this morning. It was good. I am measuring right on track, heartbeat is perfect, and my doctor remarked that I am as big now (at almost 33 weeks) as I was when I delivered Grayson. We talked about parts of my birth plan, and I left feeling optimistic and more hopeful than ever that I am going to deliver a healthy baby- a baby I won’t have to wonder how long s/he will live.

Then the news broke about the elementary school shooting. I don’t know if all the children killed were healthy, and it really doesn’t matter. They are gone.

My friend K posted this truth this afternoon: Doesn’t matter if you have sick kids or healthy kids…none of us have any guarantees about what tomorrow holds. Such a heartbreaking reminder to be thankful for each and every moment we are blessed to share with these precious little loves.

And I am so, so thankful. Thankful that at least I had today with my little guy, and today with this other little love growing inside me. And I am so, so sad and sorry that there are 26 families in Connecticut that didn’t get to have today.

I took Grayson this afternoon to get his blood drawn and held him tight through his screams and tears, holding his tear stained, sweaty body against mine when it was over, assuring him he was ok, that it’s all ok. But really it’s not ok. It’s not ok that not only does he have to fight against a disease that is destroying his body, but that he has to live in a world where evil lurks around every corner, and not even school is safe.

I’m so saddened and disgusted tonight.

Photos by Rebecca Kline Photography

I know I’ve reached my stress limit when my right eyelid starts to twitch. It used to happen every finals week in high school and college; now I would like to just roll my (twitching) eyes at my 18 year old self and say You think you’re stressed now?! Just wait- bwahahaha!

The ongoing stress trigger is the house being on the market. We’ve had a lot of showings, but no bites. The house looks nice, which is well, nice, but all our crap is packed away and I can’t find anything! I went to clip Grayson’s nails the other day. Where are his clippers? No idea. Twitch, twitch.

As you know, Izzy went to her new home Tuesday. It was and still is the absolute right decision for our family. She was a MESS. But we love her like crazy, and I miss her like crazy. I miss my little hot-water bottle snuggled up under the covers with me at night. And Ryan was super attached to her and is very sad. Twitch, twitch.

When I wrote about being jealous of big pregnant bellies, I don’t think I clarified why well enough. Since I measured so many weeks behind with Grayson, in my head, I equate a big belly with a healthy baby, which I know isn’t necessarily true one way or the other. I am definitely bigger this pregnancy than the last and the baby is moving a ton more than Grayson did, but I just wish I had a little more belly on me to reassure me that this is going to be ok. Is it going to be ok? Twitch, twitch.

Last night, I tried to write about what happened Wednesday, but just couldn’t. I was too tired, and too emotionally drained. The short version: Grayson had two major seizures on Wednesday, lasting 5 minutes and 13 minutes each. We spent the day in two ERs and one ambulance. He is ok and didn’t require a hospital stay, but there’s the worry of what this means and when it will happen again. Twitch, twitch.

I could really, really use a glass of wine right now!

Tomorrow we have a 3D “just for fun” ultrasound- I can’t wait! We did one with Grayson and it was a great experience. I am so excited to see what this little one looks like- I just hope the tech is good at keeping the gender a secret! We’ve made it this far without finding out and are in the home stretch now. If they slip and tell us (or if we see), then I will REALLY have a reason for my eye to twitch- ha!