{a celebration of chaos}

So far this week Avram has:

1. Climbed out his crib during nap time and silently terrorized his bedroom.
2. Managed to sneak in the kitchen and get out the back patio door.
3. Shattered a glass bowl all over the tile floor.
4. Emptied all the laundry baskets onto our bedroom floor.
5. Snapped my sunglasses in half.
6. Taken eight (yes, EIGHT) steps in a row on his own.

This boy they told me would probably never breathe on his own, or walk on his own, or be able to communicate with the rest of the world.

This boy is giving his mama a run for her money, and he's certainly going to keep his little brother on his toes.

And I am grateful for, and loving, every nerve-wracking, adrenaline-rushing, mess-filled minute of it.

{the working out of all things}

Yes, it's true. A new Beer is entering the world.

Originally the plan was to wait until Avram was walking, but well, you know how plans go. I will be 14 weeks along tomorrow, and between the ultrasound a couple weeks ago and my jeans no longer zipping it is all starting to feel very real. Avram is taking 3-4 "lunging" steps at a time, so we are making good progress. But this mama needs him to walk soon, people. He is one heavy little dude.

I walked in to my first OB appointment with head held high, with the Peace that passes all understanding. But still, when the doctor first held up that fetal heart rate monitor it took every ounce of internal fortitude to not rip it from her hands and chuck it across the room.

We've been told, time and time again, that Avram's condition is not genetic, just spontaneous. Just something that "happened." 

But...still.

My doctor had me see the high risk specialist in the practice just to be safe. The ultrasound went great, the little peanut is one gorgeous little symmetrical pod. The doctor answered all my questions, questions about pregnancy discomforts, what activities and foods to avoid, and hospital policies. They both answered all the questions that they are equipped to answer.

But those are not all the questions.

What if something is wrong again?

What if it's even worse this time?

I don't know if we could survive that again.

Or what if nothing is wrong? What if this baby is perfect? If he or she is, will I always be harder on them because they don't have the challenges Avram has? Will they be patient with their big brother, will they be on his side? Will having a "normal" hospital stay make me mourn again the rough start that Avram had?

There are a lot of questions the doctors can't answer, many fears they cannot calm.

I know, with a deep Knowing, that everything will work out for good. I know it. I know that no matter what, it will be good. I know that everything with Avram has worked out for so, so much good, and will continue to. There is a deep, deep knowing; a deep, deep emphatic "yes" to all that the future holds. We will have each other, we will have our family, we will be four hearts that love each other. I can't wait to meet another member of our little tribe.

But sometimes it's the working out, it's the waiting that's just so awfully hard. There are still questions, still thoughts late in the night, still flashbacks of pain. The working out is tough, it is the stretching of the clay, the waiting of the seed to sprout, the pruning of weeds.

It is a good hard, a strengthening hard, and so far know, we are waiting--in the midst of the hard--for the working out of all things.

All things for good.

{finding solace in the manger}

I have started this entry over and over again, trying to accurately describe something that happened in early December. I just can't get it right, so I'll say this.

I had a pretty awful experience leaving Avram with someone else. To be fair to them, they were overwhelmed, and unsure what to do with a non-walking-but-still-very-mobile-and-large little boy in a room full of kids of all ages.

When I came back to get him, he had been stuck in a corner in a walker (which he has never used) all by himself.

It's taken me awhile to write about it because, to be honest, it's just felt too raw. I knew they were busy, I knew it was chaotic, I knew they had too many kids and not enough people. But it still...it still ripped my heart out.

All I could think about, could ask myself, when I saw him there, sitting in the corner by himself was if this was just a preview of what is to come. What happens when I send him off to school someday, when I can't be with him all the time? Is there going to be someone to be patient with him, to take the time to work with him? Is someone going to look out for him, to understand him? Will there be someone on his side? Or will he be stuck in a corner because he's different, because it takes him longer to do what other kids do?

I dumped all this on a couple dear friends, and one of them graciously reminded me that two thousand years ago there was a young mom, with a son. A young mom stuck in a manger in a tiny corner of the world, with a baby she knew was different. She had to wonder: What will the world do to him? What happens when I can't protect him anymore? Will anyone understand him, will anyone be on his side?

In Luke it says that Mary kept all these things and buried them deep in her heart. The angels, the shepherds, the wise men. Somehow she had to know that as different as her son was, that these things were signs of comfort, signs of good things to come, signs of promise.

So instead of dwelling on all the "what if's," I am trying to keep all these things and bury them deep in my heart. The smiles, the therapy milestones, the babbles, the almost-first-steps.

These are signs of comfort,
signs of good things that will outweigh the bad,
signs of promise.

{everyday turkey}

Tomorrow morning, we go pick up Avram's brand new braces.

When we went in for the fitting a few weeks ago, the orthotics people were very reassuring. He won't mind them at all, they said; he'll love the support he gets from them. They fit right over his socks, but under his shoes, and he only has to wear them during weight-bearing activities (so, his feet are free for long car rides or while swimming). And guess what? You can put whatever design you want on them!

How wonderful!

All my worries seemed to have been put to rest, except for one final question:

"How long do you think he will need to wear them?"

"Oh, probably til six or nine."

"Months? Six to nine months?"

"Oh, no, years. Until he is six to nine years old."

Years.


Months, I was prepared for. Even one year. But years.

Years.

Of course the reel instantly started turning in my head, imagining Avram on his first day of preschool, the first time another kid makes fun of him because he has weird things on his feet, learning how to strap on his braces before he knows how to tie his shoes.

As a new policy, I am trying to not to cry as much.

Not because I think it is wrong or soft to cry, but I know that Avram will soon pick up the hint that I get upset about things. Especially things concerning him. And those hints, those are the hints he will take as to how he should react to tough things, to unexpected news, to other people.

I don't want him to cry or get defensive every time someone asks him why he wears braces, or why he has a scar on his belly. I don't want him to be scared of new people or situations because he feels that he is...different. So I know that I need to start reacting to this kind of news in a way that lets him know that we can take it, that we have Peace in all situations, that just because we have extra challenges doesn't mean that he is any less capable, or smart, or loved.

As I have been watching Avram today, as I have been busy with Thanksgiving preparations and tidying up the house, I am trying my hardest to stay grateful as we head into tomorrow. I mean, we have gone four months without seizures. That's the longest we have gone since the first seizure last Christmas. And his original shunt is still going strong, revision-free for 19 months. That is miraculous. He is pulling up to standing, drinking out of cups, starting to crawl on all fours, doing all sorts of wonderful tricks with his fingers. We have so, so much to be grateful for.

But it seems like every tiny thing, every milestone, Avram has to work for. It took weeks of therapy for him to hold up his head, months for him to bear weight on his legs and arms. If you only knew how much work it took to get this child to feed himself. Every reach, every new skill, we practice and practice.

And practice.

Everything is a battle, behind each step is work, work, work.

I know it is making him tough. I know it is making us grateful: you will never see two people cheer so loudly for someone picking up their own food, or pulling up to standing for the first time, or figuring out how to throw a ball. All the work, the strain, the crossed-fingers, the patient waiting...we take nothing: no step, no "ba", no pincer grasp for granted.

You should have seen this place erupt in cheers when the buddy popped up on all fours for the first time last week. We have been working on that for months; you would have thought he had just solved a Rubix Cube.

Tomorrow morning, we start a new chapter in Avram's story. A few months from now, taking our braces on and off we just be old hat; by next Christmas we will probably think nothing of it.

Maybe someday, new skills will come easier for my little guy. Maybe one day, we won't need the extra help, the therapy. Maybe.

And maybe they won't. Maybe it will always be a battle, a long road of hard work.

And if it is, well, then we will keep on working, keep on cheering.

And if it is, then around here, every day will be Thanksgiving.

{all i want for christmas}

One year ago, we were picking up Avram's fancy new helment. Many people have asked me how long he ended up wearing it and if it helped since I did a poor job of reporting on it. He ended up wearing it for a little over three months, and then his seizures started. We just didn't feel comfortable putting it back on him after that. The doctors were confident that the helmet didn't start the seizures, but it made us feel better leaving it off nevertheless. Although, looking back over pictures from October through January of last year, I can tell what a huge difference it made. His head was looking pretty funky, and it's so beautifully round now.

But like I was saying. It was October last year that we were picking up Ave's helmet. We may need to rename this month Orthotics October or something like that, because I just finished scheduling a fitting for the buddy to get some ankle supporting-booties.

Since he started cruising a couple months ago, we noticed that his ankles turned in pretty significantly, which is actually not that uncommon in little tikes standing independently for the first time (especially kids with low muscle tone, like the buddy). But, unfortunately, Ave's ankles have not corrected themselves. We head in on Halloween morning for a fitting for a fancy pair of these.

(Think they'll mind if we come in costume?)

Good news is that he only has to wear them when he is awake (three cheers for not having to sleep in uncomfortable plastic junk, like that stupid helmet--hooray!). We actually get to pick out a cool pattern for his new shoes, too, which I'm pretty excited about since we didn't get to do that with his helmet. It's not a forever thing, just a strength building thing. And, probably the best news of all, is that these cool new shoes will help his balance and coordination so much.

Bad news is...well, actually, I don't think there is any bad news. I think I've come to terms with the fact that Avram is just going to need some things that other kids won't need, and I'm just done being upset about it. I've fought God on so many things he has needed: his surgery, therapy, his helmet, and it has all done nothing but helped him. So, I surrender.

At least for now.

So, back to his balance and coordination.

A couple weeks ago, Ave had a bad case of Extreme Vomiting. I don't know what else to call it, because he didn't have a fever or loss of appetite. Not even an ear infection.

Just...vomit. Lots of it.

(aren't you glad you read my blog today?)

Fearing it was something to do with his shunt, our pediatrician sent us over to Parkview for a CT Scan (which, by the way, holy cats, that place is GIGANTIC).

In many ways, Avram getting sick that week turned out to be a blessing in disguise. For one, it got us in the system at Parkview. So now, any time we need to go, they already have all the information on the buddy that they need. Secondly, it calmed my anxiety about moving hours away from Children's Memorial. I love Children's Memorial, but I had such a positive experience at Parkview North that week. They moved quickly, were super organized, went out of their way to make sure Ave was comfortable, and kept me posted on everything. Phew.

Lastly, and maybe most importantly, it let to a possible change of Avram's diagnosis.

This is going to sound a little strange.

After the CT, I was called back in to the Radiology Department to speak with a neurologist. He asked me what we had been told concerning Avram's diagnosis, and I gave him the whole story about all the ultrasounds and and MRIs and yada yada yada and how they finally said he had Hydrocephalus and Schizencephaly.

The doctor sat there for a minute, then told me that based on the scans it didn't appear that Avram had Schizencephaly, but Dandy Walker Variant.

This was pretty bizarre to me, of course, because that's what my doctor said at our 20 week ultrasound, but then was later told after the Fetal MRI that he didn't have. No one has ever mentioned Dandy Walker again.

As he began to tell me the symptoms of Dandy Walker Variant, it just seemed to fit Avram so much more than Schizencephaly. When I read about kids with Schiz, they don't sound like our buddy at all. They have breathing problems, many can't eat solid foods, never walk or crawl (and if you know our little guy, you know that eating is definitely not a problem for him).

There are three kinds of Dandy Walker: Dandy Walker, Dandy Walker Variant, and Mega Cisterna Magna. Avram appears to have Dandy Walker Variant, which is the mildest form of the three.The biggest problems kids with DWV have are balance and coordination (sound familiar?), especially with fine motor skills (totally our little buddy). They tend to have at least average intelligence and do really well overall. It just fits so much more.

It's like everything suddenly just made sense.

Before I didn't really think that a name or diagnosis mattered that much, because whatever challenges we had we were just going to face them. But putting a name on it has, oddly enough, brought some peace to this mama's heart.



All the grandparents have suddenly jumped into Christmas mode around here, asking for lists and ideas and most-wished-for toys. I have had a hard time coming up with a list for myself, of deciding what I want, because really the only thing in the world I could want or wish for is for Avram to walk. He is so close, and working so hard.

 I want him to fly, to take off, to experience his first rush of crazy independence.

I want to run him down in the grocery store and chase him around the house before bath time.

I want to be exhausted at the end of the day, to only be able to wear my gym shoes during the day just to keep up with him.

That's all I want for Christmas: so bring it on, little plastic shoes.

Bring. It. On.

{requests of my memory}

Most days I am anxious for Avram to move on to the next milestone, to achieve new things. I am ready for him to be just a little bit older, to be able to do just a little bit more.

But then, there are days like today, moments like this morning, when I wish I could just freeze him in time. Moments I pray that my mind will serve me well and manage to wholly preserve.

These mornings are filled with images I pray my memory will keep close by: The moment I pick Ave up out of bed in the morning, and he wraps those little arms around my neck so tight. The serious-browed, puckered-lipped face he makes as he decides which piece of banana has the honor of being the first bite of breakfast. The tiny grunts and focused, busy hands as he tries to figure out a toy, the shriek of joy when he finds himself in the pantry (Where the Cheddar Bunnies are, of course. Who wouldn't shriek for joy?). The giddy smile on his face when he sees his dad's picture on the refrigerator, the happy "ba's" and "blllppss" I hear on the monitor when he wakes up from a nap, the loving reflex of running his chubby little fingers through the hair at the nape of my neck, his uncontrollable giggles when Dad does something funny.

My only request of my mind, my memory, is that in it's hustle to move past the pain and frustrations and anxiety, that it remembers the good, the cuddles, the after-bath smell, the big sloppy kisses. So, someday, when he is walking and talking and graduating and shaving, I can call back not only all the bad times and hard work that it took to get us there, but all of the good times and happy days, too.

{the speed of ten thousand horses}

We are, finally, back in the swing of things. After mountains of paperwork and lots of phone calls and weeks of waiting around, we are back in therapy. Avram qualified for Physical, Occupational, and Speech Therapy through First Steps here in Fort Wayne, so he is back in full Baby Boot Camp mode.

The first therapy appointment always feels like a sort of blind date; this stranger comes to your house, meets your family, hears your story, asks personal questions. It's a bit awkward, not knowing what their sense of humor is, or if they will be super personable or a total drill sergeant. It's pretty anxiety-ridden: Will they do a good job? Will they be tough enough? Will they be patient? Will they think we're weird? Will Avram like her?

Every time the door bell rang last week Avram & I sort of looked at each other like, "Well, how do we look? Do we look ok? Please tell me you brushed your teeth."

So far, so good. All three of our therapists seem like incredibly gifted and compassionate professionals. I am always amazed at the suggestions they make, at how changing one tiny thing makes such a huge difference in Avram. Just one small adjustment in how he holds his leg, and all the sudden he's pulling up to standing. Just changing the placement of food on his highchair tray, and he's got the pincer grasp down like an old pro. It's blows my mind. It's freaking magic.

The funny part of it all is how much Avram has changed since our last therapy sessions in Chicago. He was still pretty dependent and generally immobile back then. It's amazing how much our new house has encouraged him to explore (Especially the carpet. Oh, wonderful, soft, fall-buffering carpet! It makes me forgive how industrial-looking you are.) and become independent. I set him down on the floor to play, and bam. He's gone. He's in a cabinet somewhere, or sliding down the hallway on his belly, or sitting at the front door looking at the window, or chatting it up with himself in a mirror somewhere. Just like that, he's all big and independent. I go check on him every few minutes and he always looks at me with surprise, like, "Oh, are you still here?"

Which is wonderful.

Except for during therapy.

Where Avram used to sit and (usually) happily comply with Baby Boot Camp, now he knows he can simply turn the other way and take off. "You want me to do that? No, no thank you. I'll see you later. Thanks for stopping by though. Nice seeing you, really."

Approximately half of our therapy time so far has consisted of me chasing him down and dragging him back to the therapist.

I tell you one thing, you have to have some solid self esteem for that job. Avram is a sweet guy, but when they say "bye bye," he claps.

"You're leaving? Oh thank God! Here, let me applaud you while you exit. I'm so happy this moment has come."

He's just started cruising, he's still army crawling. He hasn't said any words, he can't stack things or smash things together yet. He sends sippy cups soaring across the kitchen. But he's babbling, he's figuring out how to pull back a car and make it go, he's opening up cabinets. He's drinking out of cups (take that, stupid sippy cups). In reality, he's more like a 9-12 month old then a 17 month old.

To others it may seem that we are progressing at a snail's pace, that we are behind. "Delayed," as they're so fond of saying in the medical world. I see the look in people's eyes when we go out, wondering why this big guy isn't walking or doing the other things he looks old enough to be doing.

But in our little world, we are flying at the speed of ten thousand horses, stampeding through fields and woods, jumping over hurdles and roadblocks, running farther than anyone ever thought, or said, we could go.

The wind is at our back again, and the little buddy shall be victorious.