Zinnia

New Normal, the horizon compass

Before last week I had never heard of 22q11 deletion syndrome. Before you click on the link, like I did when I was first told my baby son has it, let me say that he does not have the worst of it.

Ever since he was born I have been at odds with our family doctor who sent us on to specialists and more specialists. None of them could see anything wrong with baby Zap other than that he is little and was gaining weight slow. We had a latch problem that a local lactation consultant found and we corrected with work. His soft spot closed, but the CAT scan showed that it wasn't fused and ok. The first round of tests came back all normal. He's deaf in one ear, but so was Chad as a baby so I don't see this as a big deal. Other than that, he was passing all the development tests and yet, the neurologist wanted to double check something so he ordered a series of blood tests.

Then. Then the doctor calls me himself. I was used to hearing good news from his nurse. I missed the call and spent two frantic days playing phone tag. We got him on the phone and he said 22q11. It's not even a name, it is a description.

It explains his deafness. It explains his soft spot closing early. It explains his slow growth. There might be motor skill delays. There might be speech issues. His heart seems fine, but they may run tests to make sure. His kidneys seem fine, but they may run tests to be sure. His immune system fared a bout of Influenza B better than his sisters even, so that seems ok too. His palate seems normal too. Heart and palate problems are the recognizable symptoms for kids with 22q11 and yet, he doesn't seem to have those issues.

We don't know what to expect. Our family physician had never heard of this before, or never had a patient with it, so he's researching it just like we are. I'm coordinating care between him and the two specialists and making sure overapping orders for vitamins or medicines are ok'd. We see a geneticist later this year. My head is still wrapping around this mostly because, well, because Zap is still a healthy little bright eyed baby boy. He's chatty and robust and funny. He's eating well and gaining well and loves to pet the kitty and have his sisters hug and kiss him. He's totally normal.

And yet, this genetic thing, this deletion answers so many questions. This answer has eased those doctors off pressuring me to feed him formula or vaccinate with live virus (22q's have different response to vaccinations so we need to learn more about that before we go that route). Getting this scary sounding diagnosis has let my mind ease up from defensive mode and just enjoy my sweet little baby.

We'll let this unfold as it does and we'll help him whenever something comes up. Next up is a visit to the ENT docs to see abut his ears. Just like his father, the deafness can likely be mostly corrected by surgery.

So how am I feeling about all of this? Looking from the pictures of kids with 22q11 and then back at my little boy, there is hope. There's a decent online network. I have friends who have kids that have different needs too and they have been a huge support this past week. Teary phone calls and medical glossaries have dominated my days. I wonder if I can handle this much medical professional interaction. I hate hospitals and blood draws and the knee jerk reactions to medicate instead of change lifestyle and suddenly I am right there on the front line with my baby to offer up. I don't like it, but it is where we are.

Also, a thought on comments. Why? In telling friends and family I have heard a range of responses three of which make me want to punch someone in the face: "I'm so sorry" and "I don't know what to say" and the one that was not to my face, "you just told me that to make me feel bad." So let's be clear, this diagnoses is not a death sentence. It's like having red hair or an extra toe, it is a genetic set of programing that may involve a few extra doctor's visits. It is not something we are sorry about. Second, I told people because they asked before we were ready to really put this out there. I don't know what they were expecting. Hey, did you get the results back? Um, yes, this. !!!!! Really? And the last, well, that person is just like that and we love her anyway, difficult as that may be.  I just do not want more of that here. I don't go around saying, "Gee I'm sorry your kid is a pain in the butt." or, "I'm sorry your kid has pretty hair." You get the idea? Please. I hope. Everyone I have spoken to has been well meaning and full of love, but those words still hurt. The best response was, "Thanks for sharing that. We've been worried. Lots of love to you." Yes. Better.

One more thought. This past week has been tremendous in my thoughts, the way my mind has explored and researched and I keep coming back to the imagery of rural Colorado as a kid. Always to the west we saw the Rocky Mountain Range. Where we lived was dessert like, but we could always see the mountains in the distance. As a kid I was convinced I could walk there, run away to there, that it was just  beyond but still a real possibility and a longing. Motherhood was like this. I could always see normal, see what I was striving for. But, the reality of it is the same. Those mountains are unattainable in a days hike. When I moved to the Midwest as a preteen, first Illinois and then Iowa, I lost that anchoring compass. I searched for replacement and always felt a little lost and disoriented. Since all horizons looked the same I had to be present in the place to feel grounded and solid. Being present, everyday appreciating the green and life and wonder and specialness of each place and moment, is hard. It's easier to daydream about that distant mountain range. Way easier. The thing is though, that time spent daydreaming is time lost that could be filled with laughter and cuddles and fresh picked strawberries. 

This diagnosis is not a death sentence. Oh, did I already say that? I meant it. It's doesn't even really change who we are and how we will live. A few extra road trips, a closer relationship with our local doctor and nurses, and a little more time feeling utterly blessed by God for the life we live. Even if that time is spent on the road driving to distant cities to see specialists, it's time we'll spend together. 

This diagnosis is just a label. It doesn't suddenly change who my son is, it simply gives the worried doctors a label to slap on the file and a reference to turn to if results seem off. Normal for everyone else isn't normal for Zap. That's kind of who we are anyway. I mean, if you've ever met us in real life or have been reading here for any amount of time, that's no surprise. So the test result was actually a relief in a way in that now he gets to just be. 

If something goes wrong, we'll let you know. Prayers are always welcome. Right now we're good to go. 

Ps. If anyone stumbles across this and knows more about 22q11, please feel free to comment, link, offer resources, ect. We're new to this.

Bianca's Ram Lamb

More Baby Pictures and a story

Today was a crappy day. I was on the phone with the bank when Blueberry Girl stripped down and pooped on the couch. I was cleaning that when someone knocked on the door delivering frustrating news. Dealing with that when I missed a call from Isaac's doctor. I left the meat on the counter to thaw yesterday the forgot about it and found it today spoiled. The cats decided to decorate the back step with their gift (a dead muskrat)....and it kept on like this. Then a friend visited and that was nice. When Chad come home though and it was time to run Lil'Bug to church for youth group, I was fried. Chad said Poppy looked like she was in labour and I jumped at the chance to take a walk and check on her. 

I grabbed my camera.

She greeted me and I pet her nose. I asked her if it was really time and she turned around and showed me her backside. Then she laid down.....

 

Then I got to see something I've never seen before live. 

 That's right. Not even one of my three children. Yes, that makes me really sad when I think about it.

I was a little scared at first. The lamb was just laying there. Then Poppy started licking her face.

And soon she was up and nursing.  And wobbling around. No name yet.

Poppy is the matriarch of our flock. She's not the oldest but she's an aggressive eater and leader.

And she's a really good mama. We have 4 ewe lambs now. 3 of them are white with masks and spots.

Baby Pictures

Cream Puff brought me her lamb, Miss Nickle, for photo. So proud!

Here's the princess and her maaaaaaaa.

Surprise! Twins! This is Flurry and her lambs Cardigan (the black lamb) and we haven't named the little white ewe.

She's not all white, She has the mask! These lambs are little!

More updates soon.....

So Does This Mean My Brother Can Come Home Now?

No.

I was just noticing that these last few days there has been a lot of chatter on facebook but not so much on the blogs I read. Not even the ones I expected to have something to say about it.

Bin Laden is dead. Seal Team 6 killed him.

This happened in Pakistan, just over the border from Afgahnistan where my baby brother is deployed. Spring is the most dangerous time he said.

So now what? More death and more violence and more rebuilding and more celebrating and more...?
He wrote this on his wall today,

"The human condition is far too complicated for any one world view or over simplified answer. there is nothing that is always the answer not love not hate not pacifism not violence. Any emotion can be positive or negative if felt for the right reason. The belief that any feeling is inhearently bad is the real problem. All of our emotions exist for a reason and this includes hate and fear."

My prayers lately are for him to come home to his wife and daughter and Iowa, but I also know he is doing a lot of good helping rebuild the region he is stationed in. That good will spread. 

So while some people may be celebrating and others mourning and even others astonished at the celebration and more scared, all of these are a valid reaction and have a personal meaning. All are authentic. In thinking about this today, I had a moment of silence for all of the death that has happened around the world, all the loss, all the rebirth that will come of it. I'm hopeful that the world my children inherit will be one of peace and health. I hope the same for Bin Laden's children. 

This I do know. I do know that we are a very blessed and privilaged America. I know that food is plentiful and my children have so many toys that they have to sometimes bag them up for charity to make room for more. I hope that they will always have enough to keep them warm. I know that on the other side of the world there are families who live, actually sleep, on top of municipal trash heaps. The freedom my brother fights for is one of comfort and security and he's fighting not only for us to keep ours but for others to be lifted out of poverty and suffering and into that freedom. Yes, there is suffereing and poverty right here in Iowa too, but there is at least a chance that folks can pull out of it. We don't have to worry about roadside bombs while heading to the gas station or to the grocery store. The world is getting smaller though and each time it shrinks, it pulls all the good and bad closer together. 


Just rambling thoughts here as I ingest all of the news. I know, it's not like me to ramble blogside.

Our Day in Pictures, minus cleaning toilets....but we did that too.