{unbearable joy}

Avram has decided that, since he is now a big two year old guy, it is time for him to start walking. Almost out of nowhere, he is suddenly toddling across the living, unsteadily bounding down the hallway. He holds his hands straight out in front of him, like a zombie, and occasionally slaps his hands together in one loud clap as if the joy of independent movement is just too good, too sweet to be true.

I am still getting used to seeing him come strolling around a corner, or to not instinctively dive for him when I feel him let go of my finger. You can always hear him coming: not because of his footsteps, but because he physically cannot take more than a couple strides without releasing a shrill of joy.

He is so very, very pleased with himself.

Avram has also decided that, since he is now a big two year old guy, that it is time for him to make his own decisions. Seemingly overnight he has started throwing fits when we try to redirect his activities: throwing his body on the ground, hitting, biting, chucking his food across the kitchen if we're not cooperating with his plan. It's almost comical to see the little wheels in his head turning, how he will wait until Jason and I look before he does something he's not supposed to. Or how after being told "no" he moseys over to give me a big hug.

Little schemer.

All three of his therapists are thrilled to see his independence and desire to assert his will. I smile and nod. Oh yes, it's so fantastic!

I know that a child's first steps bring a lot of tears for parents: happy and sad. I thought they would for me. But oddly enough, I haven't cried. Happy or sad tears.

Maybe it's because I've got the whacky pregnancy hormones, maybe it's because he still can't quite stand still by himself (it's easier for your muscles to stay in action that to hold themselves in place) so he still needs a lot of help.

Mostly, I think it's because I'm just so darn proud my whole body feels like it will explode.

This boy they told me would undoubtedly be completely reliant on us for his entire life, this boy has started escaping the house through the screen door. This boy has learned how to carry objects from one room to the next: leaving me to find my nail polish underneath the living room rug. This boy is fighting to get out of my arms whenever we are outside so he can show the world how fantastically his skinny little chicken legs work.

I'll probably cry when he goes to preschool, or the first night he sleeps in his big boy bed. Or the first time I see him after this new peanut arrives, because I know that Avram will suddenly seem like a full grown person.

But for now, I'm just making those happy screeches right along with my buddy: we are so proud to prove the world wrong, so proud of each wobbly, toddling step. So proud of how far we have come, how hard he has worked, how tough his skin is.

The joy is almost too much to bear.

My big two year old guy.

I went in to get Avram up from his nap Thursday afternoon, and there he was.

I don't know if there is any way to describe that feeling--what it's like to walk into a room and see your baby like that. I don't think there are words for it. I know I won't ever forget it, but I don't know if I will ever really be able to talk about it, to express it.

He had obviously been seizing for awhile, because for the first time ever it had spread to his whole body. I carried him out to the living room, gave him his emergency medicine and called 911, staring at his tiny blue fingertips. 

Strapped into the side of the ambulance watching my boy's body shake, all I could think of was all the things I did wrong, all the things I should have done.

 I should have called the doctor about his cough yesterday. I should have gone in to check on him earlier. I should have increased his medicine last week. I should have prevented this, I should have protected him. At least from it being this bad. 

I should have.

His seizure lasted a long time, even after the doctors were able to stop his body from moving. They had to put him on a ventilator to make sure he would be able to breathe.

We were just closing in on the One Year Anniversary of being hospital stay free. April 7th. We were so close. He has done so well. And here we were once again.

The doctors determined that he had a pretty serious respiratory infection, and the next morning they told us he had pneumonia. When he is that sick, his seizure medication becomes less effective. It's much easier for him to have a seizure when his body is fighting illness. He may have started a fever during his nap, which started the whole thing.

We stayed in the PICU that night, and when Avram came out of his sedation the next morning he decided he was done with his breathing tube and coughed it out. They tried to keep an oxygen mask on his nose, but he eventually ripped that out, too. The nurses all joked that he had taken charge of making his own medical decisions. If there is one thing I know, it is that my boy is one tough little cookie.

By Sunday morning his team of doctors felt that his breathing had stabilized, he was safe from seizures for the time being, and that his fever was gone. We were sent home. 

I am very impressed with the new hospital, and I am very grateful that I can see it from my driveway. The PICU has literally been open for two weeks; Avram was the first child they had had on a ventilator (Lucky us!). I am grateful for the access to healthcare we have, when so many parents around the world will never be able to get their babies to a hospital, will never be able to see a qualified physician. I am grateful for the health insurance we have, even if it doesn't pay for every last penny it certainly pays more than we ever could alone. I am grateful for a shunt that allows my son to live, for medication that keeps him from having seizures (most of the time). We are blessed.

Avram had a hot meal, a hot bath, and clean pajamas. He is so happy to not have dozens of wires restricting his movements, or to be confined to a tiny crib. 

I rocked him a little longer than usual tonight, letting him run his fingers through my hair and nuzzle his nose into my neck. I stood up to lay him in bed, and I froze. To lay him back down in that same exact place. To put his head on that same pillow, in that same bed. 

Does he know? Does he remember?

I feel like the standard phrase of comfort people give in situations like ours is that God chose me and Jason, that He entrusted us with this boy. God chose us to take care of him. He had a little boy who needed extra care, and He chose us to give it.

This doesn't offer me the comfort that I think it is intended to. My beef with God isn't that He chose me. I will care for this boy until my dying breath, with all the love and patience my heart can muster. Caring for Avram is possibly the greatest gift of my life, no one has to point that out to me.

 My beef with God is that He chose Avram, that He chose this sweet, loving, funny, beautiful boy to go through all this. My beef with God is that He lets Avram bear all this pain, not me. 

I stood there for awhile, just holding him, just staring down at the lump in the mattress. I prayed for grace. I prayed for the strength to be kind to myself. I prayed for Help to continue to be present, to be in the places I cannot always be, to heal the things I cannot: in Avram, in myself.

I prayed for sweet, peaceful sleep for my boy.

{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.