Friday, June 18, 2010

{small bits of light}

I can't get over how different this tiny person seems everyday. It's like every morning he has a new face, a new gesture, a new little sound. His spastic reflexes are slowly becoming graceful, coordinated moves. His arms use to flail over his head like swarming bumble bees; now, his hands float exactly like little birds. I know he would probably be so humiliated that I said this, but when he moves in his sleep he looks like a little ballerina.

I mentioned in my previous post that my pregnancy had been pretty scary and nerve-wracking, and I'd like to give a short explanation. Ok, not so short. It's practically a novella. Bless your heart if you actually read it.

When we went in to the doctor for our 20 week ultrasound, Jason & I were busting at the seams with anticipation. We couldn't wait to find out if it was a boy or girl (we both were feeling boy-vibes), and I was so excited for J to hear the heartbeat for the first time. During the ultrasound, J & I kept making stink-eye faces at each other because the technician was being so quiet and so not excited. Without telling us the gender, she turned to us with this concerned look and said she was going to get the doctor.

Not exactly how you expect your 20 week ultrasound to go.

So, 20 minutes later, my doctor comes in to the room and sits down across from us. She says that they can't tell for sure, but it looks like the baby has Dandy Walkers syndrome. Of course, we had no idea what that was, and neither did she, really, but she said that it usually means that the baby would have terrible motor skills and probably severe mental disabilities. To make sure, she wanted to send us across the street to the hospital for a Level II ultrasound.

J & I drove over to the hospital. J was in shock, I was balling my eyes out. We sat in the waiting room for an hour before we went back for the Level II ultrasound. If I hadn't been so scared out of my mind, it would be been an awesome experience. Instead of that tiny, old school tv screen that I had to practically break my neck to watch, this ultrasound had a huge flat screen tv mounted on the wall across from my bed so we could watch everything and see each detail. This ultrasound nurse was actually humane, and asked us if they had told us the gender at my doctor's office. We realized that we had totally forgotten and that they didn't tell us. When she said it was a boy, I had never seen Jason smile so big. Also unlike the first ultrasound, we actually got a whole chain of ultrasound pictures to take home.

After another long wait, another doctor came in to see us. Well, good news, she said, is that it's not Dandy Walkers. Bad news, it's agenesis of the corpus callosum. Again, we had no idea what that was. She explained that it seemed like the part of the brain that connects the left and right hemispheres was completely missing. What that meant...she couldn't say. She said that some people are missing the corpus callosum & are totally fine, others are severely impaired. And, yet again, we were told that they couldn't tell 100% from the ultrasound and that we should schedule a fetal MRI.

So, Jason & I drove home with a handbag full of emotions. We were so excited to find out it was a boy, and so excited to know that every other part of his body looked perfect (The Level II ultrasound nurse told us that his heart couldn't be more beautiful). I went home, got in bed, and prayed and cried until I fell asleep.

That Friday we went home for Christmas break, and we got to meet our 8 month old nephew for the first time. He was so beautiful, so perfect, so much fun, but it was so hard to spend time with him. Whenever I sat down to play with him, I ended up excusing myself back up to our room. I was so overwhelmed with grief & fear: What if our baby can't sit up on his own? What if he can't talk? What if he has to rely on other people to take care of him his whole life?

Peace came in small bits and pieces, and joy came in baby steps. Each night, we would read Psalm 139 & pray over the tiny person growing in my belly. That Anne Lamott quote became alive for me: Hope begins in the dark: we wait, we watch, we work, we don't give up.

The Lord gave me so many small gifts over those two weeks. For one, I ran into the dad of someone I went to high school with. Without knowing anything, he told me how with his middle son the doctors said that the baby would be severely handicapped and physically deformed. The man said that he called my grandpa because the doctors were saying they should abort the baby, and my grandpa told him to act in faith and not in fear. His son is now serving in the Peace Corps and doing amazing things: no disabilities or deformities. "Don't listen to doctors, no matter what they say, " he had told me, "They don't know what the hell they're talking about." I sat in my car afterwords and cried and thanked the Lord for a little bit of light in the darkness.

The second gift came during the Christmas Eve candlelight service. I won't go in to detail, but there are reasons that my brother and I should not be allowed to sit next to each other in church. It was a very solemn service, but I came down with the worst case of the giggles I have ever had in my life. I mean, I don't know if I ever laughed that hard. I literally had tears rolling down my face and soaking my sweater. My mom was giving us a dirty look, and J was looking at us in complete bemusement. I eventually had to exit to the bathroom to compose myself. Maybe it was my crazy hormones and roller coaster emotions or the fact that my nerves were so frayed they were ready to snap, but it was another small gift wrapped up in laughter.

The service ended with the lights being turned off and everyone holding a small candle. For the first time all week, I knew that J, the baby & I were not alone. We were surrounded by the Lord's presence, surrounded by loving family, surrounded by stories of hope, surrounded by Light.

After two weeks of being loved on at home, J & I went back to Chicago. Our first Monday home, we went in for the fetal MRI. I didn't even know they could do an MRI on a baby in the womb, but apparently only a few places have the technology to do so. When they told me that they might not even be able to tell anything from the MRI because really, they've only been doing them for a couple years and aren't exactly sure how to read them, we almost decided not to go through with it. For one, it didn't matter what the MRI showed, we were having the baby. He could have 10 arms, a dragon tail, scales instead of hair, or eye balls in the back of his head, we were having the baby. If I hadn't already been suited up in the hospital gown and so emotionally psyched-up for it, I don't think we would have done it. Looking back, J & I both wish we wouldn't have. It didn't change anything.

The small gift that day was having my mom there with us. When I'm in shock, I get really quiet and pretty much completely shut down. We met with the neurosurgeon that afternoon, and he told us that the MRI showed that the baby had hydrocephalus (pretty much, he had way too much fluid in his ventricles) and schizencephaly (parts of his brain didn't form right, leaving little folds and clefts mainly on the right side). Good news: the corpus callosum was present and fully formed. Bad news: there was still no telling if he would be perfectly fine, have slight disabilities, or be completely impaired. J & I just sat there staring at him, while my mom had the presence of mind to ask questions and write down everything he said.

My doctor called me later and told me that I had to decide by the next Monday if we were going to keep the baby or not. She made it less than discreet what she thought we should do. I thanked her for all of her advice and help, but informed her that those services would not be necessary. Now, not that I endorse abortion, but I certainly don't think that the women who get them are evil or crazy. To be honest, I think the church needs to back off a little bit with the t-shirts & protests. The news we got about our baby was the most terrifying thing I've ever received, and to experience such fear of the unknown about this tiny person growing inside of you...well, let's just say I totally understand why women make that choice. And I can't say that in the middle of the night, when the shadows are dark and my mind is (again, as Anne Lamott says) a bad neighborhood I shouldn't go into alone, I didn't consider how easy that would make things. But we knew that this baby was a gift, and you just don't turn down gifts like this.

We resolved to take it day by day, and in the advice of our dear friend Betsy, we decided to not freak out until we had to freak out. I was not going to let some uncertain news ruin the next 20 weeks. The Lord was so kind, and so faithful. Our church prayed for us, and so many people shared stories with me about receiving similar news about themselves as babies or their own children and how everything turned out to be absolutely perfect. My mom and dad would call with stories of people back home and across the country who were interceding on our little boy's behalf. It seemed like every conversation I had was a testimony to how God heals and protects and provides, and Jason and I were filled with so much hope.

Meanwhile, I dreaded every doctor's appointment. Talk about Debbie Downers. The Monday before Avram was born, I had a fetal growth ultrasound. My doctor wanted to measure his head circumference, because hydrocephalus can result in, well, big heads. His head measured in the 97th percentile. Big. Really big. She sat me down after the ultrasound and explained that the ventricles could be putting pressure on his spinal cord, and it was very realistic that he wouldn't be able to breathe on his own at birth. If that was true, he wouldn't be able to eat on his own, either, and that we would have to be prepared to make a "decision" if that was the case. She also said that she would let me try a natural birth, but because of his head size if things went too long it would have to be a c-section.

Well, nice to see you, too, doc.

So, the next Sunday afternoon, my contractions started around 3pm, and by 8:23am the next morning, Avram Daniel was born at 7lbs 3oz, 21 1/2 inches long. No c-section required. Breathing on his own, eating like a champ.

Because the doctors were still concerned about what could happen, 30 minutes after he was born he was whisked away from us and down to NICU. That night, he had a brief episode of sleep apnea, so we were told he would have to stay at least 5 consecutive nights without another episode. As soon as they got me settled into my room, I was in a wheelchair down to see him. Big mistake. By Wednesday night, I had developed a pretty scary case of preeclampsia and was forced into bed rest, so angry that I couldn't go down to see my baby.

I was discharged Friday morning, but Avram stayed in the NICU for a total of 10 days. He did terrific after that first night: again, still eating and pooping and gaining weight like a champ. Let me tell you, there is nothing more difficult in the universe than having to leave your new born baby in the hospital while you have to go home. The first night we left, we walked out the same time as a couple leaving the hospital with their new born baby: complete with balloons, stuffed animals, and video camera rolling. It was all I could do to not collapse on the floor. It felt like someone had filled my insides with cement.

Despite how heart-wrenching it was to seem him hooked up to all these monitors in a room without sunlight for so long, the Lord gave us the most wonderful, kind, sweet nurses. Several of the nurses who took care of him requested to work with him every shift they had because they just "fell in love with him." After he had an EEG one night, his head was totally covered in this goopy junk--all stuck in that beautiful head of hair. One nurse, a man named Jason, sat with him all through the night: holding him and washing every last piece of that gunk out of his hair. If there is anything that makes a mom cry with gratitude, I tell you what man, that was it. That man is a saint in my book. See if I ever make fun of a male nurse.

There was one nurse I would have rather not had. She came up to see me while I was on bed rest, and explained to me that she had a daughter with disabilities and she knew how I was feeling. She handed me this poem, that went something about how I was planning a trip to Italy, but then got on the plane and found out I was going to Denmark, and how Denmark wasn't worse than Italy only different, and I had to learn a different language than I thought I was going to and so forth. It was all I could do to not wrinkle it up, throw it in her face and tell her where to take a trip to. Not my most graceful or proudest moment.

So, 10 days after he was born, after head ultrasounds & EEGs & blood tests & physical therapy examinations, Avram was finally allowed to come home. I've never been so happy in my life. J drove about 10mph the whole way home, and I stayed awake all night staring at him in his bassinet. We went to visit the pediatrician that Friday, and after measuring his head, he recommended that we meet with the neurosurgeon sooner rather than later.

Terrific.

I took Avram to the neurosurgeon the next Monday afternoon, and he sent us over to the Children's Hospital for a head ultrasound. After the ultrasound they handed me the phone, and the neurosurgeon informed me that he wanted Avram to be admitted that afternoon so that he could have a shunt put in the next morning. Now, let me tell you, I thought being sent over for the Level II ultrasound put me in shock. But going in for what I thought was just a check-up and being told they were admitting my 2 week old baby for brain surgery? Blew the ultrasound out of the water.

Avram was taken upstairs and admitted to the hospital, and the doctor came up to explain the procedure to us. He said that he would put a small drain in, running from the back, right side of Avram's brain down into his abdominal cavity. The drain would filter out the extra fluid in the ventricles and stop his head from growing at such a fast rate. Good news: it would prevent any brain damage from occurring from the enlarged ventricles, it's 100% internal and completely unnoticeable, it's a fairly common thing to have, and an easy procedure. Also, his only restrictions are no football, hockey, or soccer.

Bad news? He has to have it for the rest of his life.

The rest of his life.

That sat like a rock in my stomach.

Again, I had a small gift in having my mom there for the procedure the next morning since J had to be at work, and the procedure was over and done in 45 minutes. My mom and I had just sat down to lunch when they called and said he was in the recovery room. There he was: sleeping like a little doll baby. He did swimmingly well. Perfect.

That night, he had to share a room with a 14 year old girl. I was mildly irritated. Then, I overheard a conversation between the girl's mom and the nurse: this girl had a shunt put in at 3 weeks old because of hydrocephalus. And guess what? She was adorable. I mean, like puppy-dog, rainbows & sunshine adorable. And she played sports. And had friends. And she wasn't even in the hospital because of anything related to her shunt. I cannot explain what I felt when I saw her: I mean, she was normal. I breathed deeply for the first time in weeks.

To wrap things up, Avram has gone back for several check-ups, including a lengthy exam with a neurologist (whom J & I lovingly call Dr.Taco. I would explain, but, I mean, it would just make us seem even weirder). He spent like half an hour doing all these crazy reflex, hearing, and vision tests without saying a word, and I was just about to explode with anxiety. When Dr.Taco was done, he handed me Avram and said, "Well, it's like he read the textbook before taking the test. He's perfect." It was all I could do to not jump up and hug the man. He said we're just waiting to see if he has any learning disabilities, but, from everything he could tell, he's a perfect 6 week old baby. No sign of any physical or mental delay. I thought my heart was going to explode.

So now, just about every doctor's exam ends with, "Well, we're just going to wait and see." And so far, he's right on track for every developmental milestone there is.

I've been reminded through all of this that, as CS Lewis says, God is a builder and not a magician: that He works in steps and brushstrokes and He is patient and He really does have a plan that only works on His time. Sometimes I still feel like God has forgotten me, or that He's playing some nasty trick on us, or that I must have done something terrible to cause this, or that if I actually did trust Him and release my death drip on the reigns of all this that everything would come crashing down in smoke and flames and it would all be my fault.

I don't know why we've had to go through all of this, and perhaps I never will. But I do know this: Avram is, after salvation and J, the most beautiful and perfect and undeserved gift that the Lord has ever given me.

With his arrival, it's like all the windows have finally been opened up, and all this joy and love and grace has just come pouring in...like sunlight.

25 comments:

Anonymous said...

aww..cassie i didnt know you went through all that! you are such a strong woman and i look up to you for the great strength you show!! :) your baby is beautiful and you & J will make wonderful parents..
love,
kianna

Marc Buwalda said...

Awesome to hear your, Jasons, and Avram's story. Praise God.

Anonymous said...

Cassie it was great to read about your "shining barrier" he is absolutely adorable.What a witness you will be maybe someday for someone else. You are so strong and God does make us that way for times like these. Hope to meet the little guy soon. Love ya, Sharon W

Chelsea Buwalda said...

Wow. That was a heart wrenching and yet beautiful story. Thanks for sharing. God is good.

Anonymous said...

So now tears are streaming down my face...our God is an awesome God..is all I can say right now..and you and Jason are even awesomer (ok I know that is not a word but all I can come up with right now). Love Aunt Ruth

Dennis Kutzner said...

Read the whole story, Cassie. GLORIOUS. A wonderful tribute to the faith you and Jason demonstrated and now demonstrate. We are all proud of you guys. God has HIS hand on Avram and His plan and purpose for his life is awesome, to say the least. When my mother was five months pregnant with me she was in an auto accident that left her in an unconscious state for three weeks! The doctor told my father she may not make it and for sure the baby would not make it. . .well here I am (now you know why I am a little crazy) and my mother just turned 80! God is good and His blessings are on the Beer family!

shelby maidment said...

Thank you for sharing that beautiful story. God is so good to us. Your son is a little trooper and he is adorable! You are a beautiful mother and Jason is an awesome dad. Congratulations.

Anonymous said...

amazing story! God Bless you, Jason and Avram :)

Anonymous said...

aww cassie you guys are completely amazing! that would have been the most scary thing EVER. ahh im just so happy he is doing amazing and i know that God is going to continue touching him and hes going to be a great child of God just like you and Jason! you guys are such an inspiration to me and its so amazing how things can happen when you trust God.

i love you all with my whole heart thank you for continually showing me how to be more like Him.

hugs!!

sarah ♥

stephanie said...

Cassie you and Jay are wonderful! You are going to be amazing parents and God is so GOOD :) He will take care of your little blessing! I know he will- Tons of Love your way Steph W

Cherith said...

Cassie Jo,
I love you! Thats all I can say or even think of. My heart was breaking reading about leaving Avram in the NICU. It reminds me of Sage being in there. Although my adventure does not compare to yours! I love you dearly and I am so happy you have your little miracle :)
xoxo,
Cherith

Jason Beer said...

i love you, baby.

...yep

Jenny Getts said...

Wow. About the only word that could come to mind when I finished reading this. Even as noone knew, still, the whole nation and there brother was in deep prayer for your little boy. It's amazing how God answers prayers. He is SO adorable. I wouldn't have thought.. Avram is lucky to have parents like you!

Jannel Miller said...

Well CJ you certainly have a way with words. The tears I shed reading this....hurting for you and yet in such awe of how strong you and J are. I know you didn't feel strong, but that's why God gave you your family-biological and spiritual.
I will be praying for Avram for the rest of my life (along with you and J of course!).
I love you all,
Jannel

polity of man said...

cassie,
you are so INCREDIBLE. some people would give up, but the universe knew you wouldn't. avram has the most amazing parents in the whole world and is the luckiest little guy anywhere.

Caitlin

Anonymous said...

Dad is smiling with a few tears on his cheeks

HCorporan said...

Hebrews 11:1 Now faith is the substance of things hoped for, the evidence of things not seen. : )
I found your blog from Betsy's blog after viewing the precious pics she took of you and your beautiful family. I just wanted to say that I am blessed by your 'novella' ; ) and your candid, honest way of telling it. All too often as believers we do more of a hinderance to others by pretending we have it all together. Anyways, you have done just the opposite, and by doing so have truly blessed me. We had a way more minor issue during my 3rd pregnancy, and man was my faith swayed. But He is in control and his 'strokes' are perfect no matter how long it takes for him to accomplish all that He desires to do. I will never forget your family's story, and will be praying that Avram is perfect in every way, always. But I know to the Lord, he is, was, and always will be perfect to Him, no matter what the world, or doctors say : ) Thank you for sharing, God bless you and your precious family. Sorry for my 'novella' back : )

Anonymous said...

Well I guess I am going to be blessed because I read every word through tear filled eyes and wanted to thank you for sharing your story with us. You are all definitely in my prayers and he is an amazing little boy. God has something incredible in store for him. And you get to set back and watch his life unfold. There is nothing more fulfilling than that.... Julie Wegner

By: Jessica Van Schepen said...

Cassie- I sobbed when I read the story you have shared..wow. It is so similar to mine. I have a little boy, who is now 3 1/2 yrs old with ACC and Hydrocephalus..His life has been a struggle at times physically and learning wise but I couldnt imagine our lives without him. His name is Carter and he loves music and brings so much joy to my life. I too went thru many ultrasounds while pregnant, fetal mris- not that they mattered or would make me change my mind about having Carter. He had his first VP shunt places @ 8 days and has since had 5 more surgeries for his shunt. He is physically delayed and began walking last summer @ 2 1/2, but hes walking, hes talking and hes persistant and determined. I would LOVE to talk to you more. If you are interested, plz email me @ jessicavanschepen@yahoo.com
God Bless you and your son!!~Jessica

Bec said...

I can confirm that Carter is one of the coolest kids on the planet and Jess VS is one of the sweetest people who is a wonderful person to have in your life :)

Anonymous said...

Cassie,,

I went to school with Jason and just happened to click on your blog from Betsy Kings site.. I just wanted to say that you are an absolutely amazing writer and incredibly inspiring. I am hoping to become a mother soon too and love to hear others stories about their experiences. Ohh how it is scary! God is always with us and I wish you and Jason the best!

Leslie Striker/Presley

Kaila said...

Hi! I found your blog through Betsy's photography. I still remember when she posted your wedding photos- I always through you were a radiant bride and then your little man is a doll. Reading your blog has been healing for my heart in many many ways in a few recent areas of my life. Thanks for the reminder of promises and God's goodness even in the face of adversity and the whole "not knowing." Also it was such a blessing to hear your willingness to keep the faith and stick it out even though you didn't know what the future may hold. I must say I have learned many times in life that God seems to use our deepest pain and turn it into the most glorious beauty if we are willing to wait. I am currently in a waiting game as well, but thankfully God has given beauty along the way. I am sure you feel the same way!

Meghan Nield said...

Cassie,
You and your family are an amazing inspiration. I am 25 weeks pregnant with fraternal twins, one perfectly healty, and one just diagnosed with acc. This has come after conflicting diagnosis over the past 6 weeks. It has been a rollercoaster of emotion and the end is no where in sight. Too many times we have heard "I don't know" or "We cannot say". Thank you for giving us a giant ray of hope, and reminding me that the lord does not give us what we cannot handle. All the love to you and your family.
Meghan Nield

Anonymous said...

One of the kids who ran for Student Body President at IU last year has hydrocephalus, and nobody knew/knows, unless he himself told them. And according to him, "It's no big deal..."

Anonymous said...

Cassie-I just read your blog today after seeing the article in the paper. I've worked at Children's for a long time-not on the clinical side, but on the business end. Because of this, I sometimes forget about why I do what I do-until I had my second child in January -who I'll just say has had his own challenges-not as severe as yours, but it doesn't matter, big or small, we still love them. I am so thrilled for you that your beautiful baby boy is doing well. I wish you and your family a wonderfuly holiday season and I pray he will continue to do better.

Anoynmous