The Moment Things Change

I remember the day that Isaac's diagnosis was given to us over the phone. It was unexpected even though there had been problems that had landed us at the specialists' offices and doing a CAT scan and micro array genetic tests.

I remember the days that each specialist signed off and told us we no longer needed follow up.

What is harder to pinpoint are the days leading up. Isaac is getting healthier every day, but it is a slow process and harder to see day by day.

Last night while nursing him to sleep I reach down to tuck him in and noticed that his legs are getting chubby and thick, almost muscular. His belly is squishy. While other toddlers slim out when they start walking, Isaac seems to be filling out instead, building strength and making him more steady day by day. Last night wasn't the first night I squished at him, but it was the first time I realised what good this means.

He grew 2.5 inches since February. Gained 3 lbs. He's walking now. This morning, even though it wasn't spoken clearly, Isaac said, "Move please Lily," and, "Here is this Daddy!". He's beginning to try to vocalise sentences even if it sounds like babble to us. He is signing about 20 new signs in the last 3 weeks.

These things are good things, progress, but slow progress. This progress is what we lean on when we start to get discouraged.

These things are too easy to forget when the pressure is put on us by doctors in offices that only see our kid for moments of their lives once or twice a year, trotting out the catch phrase, "impaired cognitive development," when parents question any recommendation. I was thrown that phrase when Isaac's iron levels were sort of low (but not for a breastfed baby) and when he was diagnosed as deaf. The second time doused me with cold water. Deafness impairs cognitive ability? I seriously doubt the med student and  doctor would dare say that to my blogger friend Mare or any number of deaf adults I have encountered in my academic career both as a student and professor.

It was those experiences that knocked the sense into me in that moment. They were recommending an expensive surgery to place tubes, a surgery that was not guaranteed to work, not without risk both short term and long term, and the main argument for doing it was cognitive impairment since Isaac has never had discomfort or infection (both are valid reasons to do surgery, in my opinion, but Isaac had neither).

I asked for time to think about it, time to look into other options and also look into price points of different surgical centres.

In the time I gifted my son, I learned a lot of different things. I learned that kids can outgrow the fluid issue, that NUCCA chiropractic care was inexpensive and effective specifically for this kind of deafness, and that surgical centres not only vary wildly in price, they are not used to being asked about costs because hardly anyone price point shops. In addition, they vary in how competent their support staff is and how well they understand genetic conditions.

So when I forget or get caught up in the day to day mundane of Isaac's wonderful progress, I remind myself of his laugh, his strong body, his sense of humour, and all the work we have all done to bask in the glow of his health.

These days are not each as heartbreaking or as shocking as those first days of diagnosis, but even though they are small and beautiful and gentle on our hearts, they bring the change that we have been waiting for. They herald calm waters, sunny days, and we can settle in and enjoy our family.

Perspective in Suburbia

Everybody has bad days. Today, not even 1pm yet, has been pretty hilariously humiliating.

I could not fall asleep until about 3 am and then wake up and go started at 5am. So 2 hours of sleep. I felt sick immediately and so tired that I was dizzy. Dressed and loaded up the kids to drive Chad to Des Moines for work. Isaac wasn't wet yet, so I didn't change him.

I got 45 minutes more of sleep in the car as a passenger. We dropped Chad off and I took the kids to the Drake Diner.

Sounds good so far right? Wrong. The thing I ordered was disgusting. Usually, Drake Diner has the best food ever, but not this morning. Still, it was food and I ate it.

Still too early for ballet lessons, we stopped at Target to buy new shoes. Holly has been wearing 12 kids. She's actually a size 2 in big kid. Yikes. Poor kid. Also, she is 5! SIZE 2!

Heading to the clothing department I felt something around my ankles and almost trip. I look down mortified.

Mortified. 

My wrap skirt had come untied and was around my ankles. It was tangled and needed to be pulled off my body to untwist, but I was unwilling to uncover the cloth I had clutched around my mid section. I started to cry as more and more people turned to look. Lily held up her hands and blocked the view the best she could.

We made our way to the bathroom, where I promptly threw up for the next 10 minutes. I do not do well with public humiliation. Who does? Really?

So...my day has to get better right?

I look at it this way. Worse things are happening in the world right now. I am lucky I have clothing at all. I am privileged to be able to buy my kids new shoes at Target. I was very lucky to make it to the bathroom, children in arms, in time. Grateful for clean water to clean up with, even when I realised Isaac was poopy and the smell so wretched that I vomited again. Again.

20 minutes later, our cart was still parked by the register with all of our things in it. The cashier asked if I was ok. Clearly, I looked pretty wrecked.

We still had ballet to get to and sign class. We survived both, taking each task one at a time.

Now we are at the library. The kids picked out bright orange sweat shirt hoodies for deer season timber play (and park day mama can track all three kids in matching bright things). All three have new shoes that fit, I think (Isaac is hard to tell, but I think they will work, he has to wear them for day to be sure....). They ate lunch and are occupied with library things while I blog and soon grade more papers. Tonight is the last night for a while of art class and when I get home I will crash into bed and sleep until I am done. I have a bed, a dry warm home, and a loving family. Bad days do not take that from me. Humiliation is a moment that passes by, is swept away like tumbleweeds on a windy day. I am pretty sure no one vlogged it. Pretty sure. That would be awful. I'll check youtube later just to be sure. Sigh.

My skirt is now tied so tight I may have to cut it off tomorrow. It will not fall off again though.

So, chin up. It could be worse. Your pants/skirt could drop in the middle of a crowded suburban store and lead to a barf fest. Hang in there all!

Brave Bear

Today Isaac had his blood drawn for labs. This is one of the regular parts of our routine. 22q can mess up blood chemistry in some messed up, dangerous ways. Since Isaac doesn't have some of the other symptoms, this and mental health are the things we monitor closely, especially since he was born with jaundice and low iron and it took a really long time to fix those lows.

Early on, I insisted on trying to address his lows with nutrition. His lows were never dangerous lows (except the jaundice). However, early on we were doing blood work every week and then every so many weeks, then monthly. We have become experts on what works for him for blood draws because early on we let the big hospital lab do their thing and their thing involved student nurses and a whole lot of incompetence. Isaac still cannot have blood drawn from his right arm because of how they injured him in an attempted draw. They never got the sample from him, which was a good thing, because they were going to take it all at once and the amount was supposed to be taken from three separate sessions! THREE! For a 6 lb anaemic baby it could have been tragic. Good grief, I am so glad my mommy instincts caused me to walk him out of that lab and never look back. We drove home and went to the urgent care here in our small town.

Since that day, only the specialists in Minneapolis and our local small town nurse are allowed to draw from him. She called me the day after his first big draw post diagnosis and asked questions about his condition. The next time we went in she was ready.

1) She splints his good arm.
2) heat pack
3) I am to make sure he is fully hydrated
4) 10 am works best for him
5) he lays down on a cot- not sitting, not held in my arms

We do this every time he needs the labs. Lily (8) and Holly (5) are always there. We have tried a couple different approaches to how they behave and interact in the room and this is what works for us:

1) They bring their baby dolls in their slings.
2) They talk to their dolls about getting blood drawn.
3) Holly sings to Isaac while Lily hold his hand and strokes his head. I keep his legs and torso secure and make eye contact with him.

Today was different than any of the other times though. 

Today, Isaac was old enough to understand this was something he participates in- not just subjected to. It has been 9 months since his last one. Blood labs and draws on babies are hard for everyone, usually he screams and thrashes. Not this time. He only cried at the very end, told/signed to us he was being brave like a bear. Aw.

Part of me is sad that this is part of his normal, our normal, so much that he understands that if he participates it goes better for him. I am also so proud of my brave boy.

We are extremely lucky that so far our nutrition approach has been working. His levels slowly improved and are in the normal range. Iron got significantly better once he started eating solids and took a preference to meat. Ha. His growth hormone remains low normal, and at first the docs were pushy about growth hormone injections. I have written about how that went down before. He will not be taking those, thank you. Being short is not a medical condition. If the low normal ever affects his internal organs or operating systems malfunction because of it, then, and only then, will we consider it.
Calcium and vitamin D are the two other big ones we check on. His D hovers around 20. Pre 2010 that was considered good. Now 40 is the aim. I don't buy that though. The research isn't substantiated enough for me yet and Isaac is in excellent health. We do give him cod liver oil and extra mushrooms in the winter and greyer days, now we cook more with lard too (also a good source of D IF the animals are raised on pasture). We don't use sunscreen and he gets playtime outside on sunny days, every day that is sunny. So far, so good.

It is pretty amazing how healthy he is though. I know that the docs bristled at my hippie, wait and see, lets heal him with food approach.....at first. Now though, sometimes I get calls from them asking about sources and brands and they send med students in to chat with me. Really our whole family has benefited from my hyper vigilance on nutrition, though I was headed that direction before Isaac was born, he has driven home for us how very important and effective whole health nutrition can be. Sure his labs were slow to improve, but they did.

Still, today was a turning point. He is growing up.

Nostalgia

Today I spent steeped in nostalgia, like a cup of freshly brewed earl grey tea with honey and a piece of hazelnut chocolate.

Lily wanted to know about her name and the day she was born.

Holly wanted to see what she looked like as a baby.

Chad wanted pictures of our first house and garden in Sherman Hill.

Someone asked to see pictures of our Riverbend house.

All of it, brought me to the photograph archive of our pre-farm years. It is pretty interesting to look back and see the mother I was, the kind of friend I was, my ideology on urban blight....all of those things have changed.

This was our city garden.  This was Lily mud-o-potomus. She was a natural from the first day her feet touched earth. She was the driving force behind moving to the farm. Good grief she was adorable. She still is too.

Sometimes I miss the simpler time we had being urban gardeners, homesteading our little backyard. It was much easier than managing the food source for 40 families and my own. Still, I cannot imagine life any other way now. We are farmers.  There is no doubt about that now.