Invisible, Thoughts on 22q and Being Public With Our Son's Diagnosis

Someone recently asked me if Isaac actually has a disability, and the answer is yes and no and yes and maybe and I don't really know.

This question would have frustrated me even a year ago. Now, I have complicated feelings about this and I am not exactly sure how to explain or respond.

Isaac is doing so well that people from afar cannot immediately spot his struggles. This increases his chances of "passing" or assimilating into a world that others medical differences, both physical and neurological. He's three years old though, so things may change or be more obvious as time moves on.

Early on I had wondered about his diagnosis. He does not fit the typical 22q symptom profile. His case, thank the Lord, is really physically mild, non life threatening. He doesn't have a heart defect, has never needed surgery. This fact alone makes the doctors take a second look at his charts. He doesn't get sick often. We have avoided many interventions that often people choose out of fear when there are multiple options, and so have avoided complications from those more medical interventions. Mostly we are darn lucky at that outcome. We tow the line with it though, ever vigilant.

Being a special needs family is the hardest thing that has ever blessed our family. Every single time something difficult, hurtful, heartbreaking, or scary has happened to us.....something more beautiful and precious and perfect has been born from it. That's how I feel once I got my sea legs about Isaac's diagnosis, once we were out of the abyss of "failure to thrive" and he'll be deaf/never walk/ect stormy seas.

I know that because he keeps proving doctors wrong that this is the basis for questioning his diagnosis or the seriousness of 22q syndrome. I did. I most certainly did. Genetic defect is a dangerous label and one I do not want for him. If I could go back and never run the test, just deal with symptoms, I would. There has never been a time in history where having that label has a good outcome for the person wearing it. Maybe this era will be different, but as a history professor I kind of doubt it. I fearfully doubt it. This is something that keeps me up at night.

Really. More so than last year wondering if he would ever walk. Which he did, right before his third birthday. Wondering if he was really deaf, he passed his first hearing exam at 18 months. Wondering if he would never learn to read and enjoy books like I do, wondering if he'll ever be about to tell me about his dreams with words in the middle of the night, wondering if he understands what the world is really like.

I am grateful for his diagnosis too. Because of it, we are blessed with the most amazing friends. The 22q community online helps connect people. Through Isaac's struggles I met several local people who have kids with medical differences too, including another 22q family, and I now count them as some of my closest friends. They know. They know how much they mean to me because I remember to tell them often. That is something else I learned from them.

I have someone really special, magical, life changing playing outside in my back yard. He's singing to the chickens and sliding and swinging and tormenting his sisters with mudballs (which they LOVE) and when you see him from afar he looks and acts and seems just like a normal three year old. I am totally ok that folks think that. It's his cover identity. If that allows folks to get closer and get to know him and us, maybe that many less people will be afraid of "genetic defect". Maybe that many less "defective" babies will be aborted (yup, I went there). Maybe my fears that history will repeat itself will not come to fruition in his or his children's lifetime.

Maybe.

He is lucky that he doesn't have an obvious, physical medical need that reveals his story like a badge to onlookers. It is much harder for children who do, that's for sure. Much much harder. There are so many more children who have silent diagnosis. Maybe that kid melting down at the mall isn't a victim of bad parenting, maybe they struggle with sensory issues. Maybe the kids crying at the birthday party accidentally ate gluten filled cake and his tummy is cramping. So many families hide their issues for fear that talking, sharing, makes them a target of gossip. That's the last thing anyone needs and when you are in the depths of just trying to survive another day, one less thing to worry about is one less thing. That's one of the many reasons some families become reclusive and silent.

Not everyone gets the gift of our story. Gossip is like Diet Coke. It's fun in the moment, but on a cellular level it is killing you. Getting to know us is like peach pie made from scratch when the Missouri peaches are perfectly ripe. That pie is precious.  This life is precious.

Making Fun

Sometimes we have to get things done for the farm. This means hours and hours in the farm truck, hours of beautiful days that the kids long to use for adventures, exploring, and soaking in sunshine. It is unfair, but it is part of our life. This is how we homeschool, how we run our business, and keep home. They come with me, work along side us. I usually use the long car rides as an opportunity for a "captive" audience and tell them stories or play podcasts about science and history (because I love them!) and make up alternative lyrics to songs on the radio, or even talk about the body politics ever present in the popular songs. Let me tell you, explaining Blurred Lines was NOT fun and now they pay attention to lyrics and call out when they hear something that is disrespectful to either women or men. This week t here is a song with the lyrics, .....Don't go crying to your mama, sung by a women and Lily was outraged that this woman was telling someone that his mother shouldn't comfort him when things get tough. Humans need comfort! They need someone who loves them to support them when things are hard!

That's my girl.

This week was no different, except that it was Holly's birthday. The weight of the unfairness that she should spend her sixth birthday running errands on a gorgeous Spring day, bothered me for the days leading up. So how to make this work? Ah ha! Just add water.

I try to break up our car trips with short park breaks, something fun, or a food break. Luck for us, the first stop, an enormous load of firewood, was at a house that had BABY TURKEYS. And C. let the kids pet and hold them. Oh, that was fantastic!

Next to the nearby park with splash pad! Isaac had not been to one this year and last summer he was really too little to play in them. He wasn't even walking at the time, remember that! He laughed and played and even floated on his belly to try swimming in the 18 inch deep center part.

Then it was 2pm and she wanted crab rangoon. The two places of choice were CLOSED. Oh the injustice. We will attempt then, to get her special food later this week, maybe before recital rehearsal.

Today was a similar chore, taking us 3 hours from home. At the half way point, a friend invited us for a play date AND she has a kid pool! Oh the joy of being water babies. This one was too deep for Isaac, but she had baby goats, chickens, and a cool playground so he was fine. He also decided that riding a push car down a steep hill was a fine idea. I let him, he was so happy and proud of himself.

We made it through our work days, and they ended up looking a lot like our at home play days. It is all about perspective, choosing joy, and making our own fun as we go. Taking time to make dandelion crowns and enjoy the blue sky, the green canopy of trees, the laughter and dreams of our children.

That's the cool thing about life, it is full of choices and opportunities for friendship and joy. I am really glad I know the two women we visited this week. They are inspirations to me, doing interesting things, and embracing the dandelions in our fields.

All Anyone Wants is to be Included

Lily and Holly are in the church holiday pageant. When they found out that other three year olds are too, but not Isaac (because he isn't ready for the Sunday school preK class) they marched up to our Pastor and asked why Isaac couldn't be included. They said, "All anyone wants is to be included." The Pastor was quiet for a moment and said, "You girls are right. I will find a way and Isaac will be in the show too."

Not five minute later, Isaac was cast as a lamb. He will toddle and run around the sanctuary during the show, making lamb noises and dancing. He can be loud and go where he wants.

All anyone wants is to be included.

Inclusion is not having a kids table at the holidays. Not having special sports just for "special" kids or just for girls. Inclusion is being a family and being involved together. Inclusion is remembering how important inclusion is even when the normal of the world is exclusion and isolation.

My friend Holly says that when you get her family you get ALL of them, no one gets left behind (or at home). This is how we live and to us Isaac really is a normal kid. Even when we encounter fully verbal and active kids his age, we see Isaac as a whole and beautiful person. It is easy for us to forget the delays that others see, easy for us to forget that not everyone can read his hand signs, we just know him.

Holly and Lily though, they advocate for him in ways that even I missed. It never occurred to me to even ask for him  to be in the play. I figured I would stay in the nursery with him while they performed. I would miss out too, but better than trying to hold him while he signed frantically for "trains" and "play" and screamed loudly the whole time. He loves the church nursery so, so much.

The girls, my girls, thought better. They never even missed a beat because to them, of course he should be included. 

The response from our church family? So loving and wonderful. Just one more thing that helps me know we found the place where we can thrive. Open hearts, open minds.

*Unfortunately, a Midwestern snowstorm has cancelled the service that included the pageant. The girls have prepared a speech to present to the Pastor all the reasons why the show should still go on, even if it has to be after Christmas. The story of Jesus is IMPORTANT even after Christmas, they told me. I am so blessed by these children. Every single day, I am blessed.

Night Eyes, Isaac's First

Painting

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.

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.

Surprise!

We've been busy this week, bringing in hay before it rains, re organizing the kitchen cabinets, and other stuff I will post about later. Farm work is hard.

Childhood is harder. Isaac is 2 and a half and has never had a day in therapy. He's dleayed in many gross and fine motor skills. Other families and children with similar delays are in daily or weekly Occupational, physical, and speech therapies. We've opted out for now.

Why? He makes progress on his own, on his own time. Many folks we talked to said their children blossomed when they took breaks or even quit therapy. That maybe therapies did less for the child than people thought, and more for the parents state of mind, the feeling like you have to be doing something.

We do something every day. It is called living. We play hard, we work hard, and we are very active and connected. I bought text books on the therapies and have no problem understanding them. I realize that this is not the case for many folks. I am not judging you or your choices. I could also see and justify to our specialists the many reasons we should keep doing what we are doing. We live rural. We'd have to drive 65 miles to the place to get private therapy. That much more time in the car could instead be spent playing outside, actually using the muscles we are trying to work. (I know there are government services that will come to our house, but the whole idea of that makes me upset and freaked out. I read too much sci-fi......, plus we are rural (limited services) and if we NEEDED that, there are better experts 65 miles away. I am willing to drive if it is necessary. In addition, we homeschool and if we get "in the system" they have to give us permission to homeschool. Not kidding.)

I created our own "therapy" gym in the living room. I did floor exercises with him. He gets to ride on a horse semi- regularly. Park day. Sunshine. Massage. Good nutrition.

Still, I could see over and over the pre-walking signs and skills. 2 months ago Isaac walked across the room to grandpa, turned around and then did it again!

Then he refused for the next month to stand or walk, even holding someone's hand. Slowing we got him to walk holding two hands, then last week he started doing it holding just one. He also insisted on walking like this all over the house. I was excited, but I also knew that we could be at this phase for a while, given his pattern of learning.

I was starting to doubt my plan. I was starting to think I have failed him. That maybe we should have him in orthotics and daily work at the child services facility 60 miles away. That all my theories about education and happiness and stress free play learning were bunk?

Then yesterday, he just walks into the room and yells, "MAMA!!" and claps his hands!

He spent all day walking the circle of our floor plan, walking back and forth outside on the flat bed trailer, and walking around the kitchen!

Of course he spent most of the night crying and refuses to even stand this morning. I am not sad. This is progress! This is fantastic progress. What we are doing is working. It is working not just for Isaac but for all of us. Just like with the hearing and ear surgery crisis, waiting, and working with longer acting natural options does work.

Happy works.

Making Time for Each Child

In a special needs family the child with extra medical needs gets a lot of the attention. It is already a difficult task to balance each child's needs and individual relationships but when a child that demands extra time and attention because of real medical needs the entire balance is thrown up into the air.

We have 3 children. They each have needs, even if they are not medical. It is all about relationship.

Now that we have lived our way through a transition, we can redirect and make sure each child gets their needs met. Homeschooling really helps with this dynamic. Special moments can be caught on the wind and held for a moment, sometimes it is while washing dishes or at bedtime, or while one is running full speed on the way to deliver swiped Popsicles to her siblings.

I love you. I love watching you play.

I love watching my children fall in love with the art of their choice. For Lily it is clay work. So much clay work. We are taking mother daughter classes together at a local art studio. I am terrible at pots but I a fiercely good at loving Lily. Lily told me that she dreams of having her own studio and decided not to rent one in the building. No, she wants the whole building and she'll rent to others. Ah, my little dreamer.

For Holly it is ballet. The first time she walked into the studio, her foot touched the hard wood floors, she lit up like I have never seen before. That enthusiasm has never once waned. She LOVES ballet. Everyday. Always. Loves.

At her recital she was a ham. At the end of her class's dance she walked out to the front of the stage for a special, only Holly, with flourish bow. Because of course, she was the star ballerina in her mind. That is what she saw the lead ballerina do at the Nutcracker.

I read to her and cuddle her every chance I get.

Isaac is still letting us know what he loves. Apples. Climbing. Playing his piano. Cuddling mama.

I know these things will change and evolve. I will be here for all of it. Right here. Loving every moment, every smile, the stolen glances, the goofiness and joy. I will tell them how much joy they bring me just being in my life. I will nourish their relationships with us and with each other.

I have witnessed such tenderness that my heart has burst into tears. These people have made my life better by just being in it. Why should I hold back telling them that every single day that I am able to?

It gets complicated. Complicated to work, take care of a home, take care of their physical needs and on top of that nurture them and their passions. I prioritize. Housework, beyond basics, come last. I actually pay for someone to help me get to that. My work is online and I make the schedule around the kids and their appointments. Prioritize.

On top of all of that I make time for them. Daddy daughter night, Mama takes one kid to tea, firefly walks with flashlights with just one kid. Ballet camp and class allows me to connect with the child not in class. We talk. They take turns helping me with dishes and I tell them our heritage stories so they know the magic that they have been born out of.  I make time.

I value the outputs of their passions too. Holly's dance pictures are framed. Lily's ceramics get used. All three children have their art framed and hung up in public view. 

I value the things they make and that matters. Some houses you walk into and you know they have children but there is no evidence of children. In our home, there is mess and chaos and you KNOW we have children the minute you pull up in our drive. Our house is filled with love and joy and the joyful noise that comes with a happy, vibrant childhood. Part of that is also that we have a full range of musical instruments, both real and toys, accessible to the children.

We live a different life. I understand that. Different does not mean bad though, it means magical. When they are honoured as individuals and humans in the world, it becomes less of a challenge to make time for them or for ourselves. We are always true to what we are. They see that.

Last month Lily had a friend over and we asked her if she planned on staying up all night and complaining about her parents. She looked at us confused. Later she asked about what I had said to her. Do kids really do that? I brought them a snack and heard her telling her friend about all the amazing adventures we have and then saw me and instead of clamming up, she asked me to join their conversation.

I know it won't always be like this. Maybe? I hope that nothing ever dulls the shine of joy and curiosity from their eyes. That is my priority: to feed their faith, their curiosity, their love for each other. When that is the goal and we put all we have into that, then time is made. Time is cherished. Time slips by way too fast. I also try and make time together special so they see me honour each of them, so it is not a competition.

I try and bring the children, all the children, to at least some of Isaac's appointments. We don't hide his needs from them. Sometimes it can be scary. The reason is that if something happens to us, the parents, even in their adulthood, they will still have each other. I want them to have the kind of relationship that this is a natural part of their lives, that they would welcome it. We don't know if Isaac will be able to be independent. Right now it looks like he will. Anything can happen to any of them between now and the unforeseen future. If we make time for them, will they make time for each other later?

It is all about relationship. 

Preface/Background to Our Chinese Unit Study, Unschool Style, plus an introduction to newbies to "strewing".....

We homeschool. We unschool as a philosophical approach. For those who are unfamiliar with that term, it is like Montessori without the large class management of other people's children aspect.

Our classroom is our home, our farm, our community- you get the idea. Our home is filled with books, seriously thousands of books. No less than three bookcases hold "kid" books, the rest are all over- history, science, literature, classics, antiques, newest editions, science fiction. We love books.

In our dining room, at kid level, I have art supplies. I do keep the higher quality paints and inks up high but only so Zap doesn't eat them and Holly doesn't take up Interior decorating- again. They can have them down when they ask, just not when I am in the shower or on the phone. You know? This.

I have a whole huge bookcase with kid history, math, and reading books. Whole curricula..

"Hold up, lady, you just said you unschool!" Yes I did. That doesn't mean we don't learn things or enjoy using books. We all do. Especially me.

That's where something called strewing comes into play. Strewing is where we make available items of interest and leave them in accessible places to be found and explored at will.

So I thought about how we will handle school this year, since I am going back to work away from home a couple days a week and fall is pretty busy with deliveries and craziness of farm stuff. My kids have been begging to learn more about China, love Chinese food, music, and art. We've also fielded some questions from them about why we don't buy Made in China products (we actually do though), especially packaged food and art supplies (which end up as food unintentionally toddler style). A really negative bias has crept up in our whole culture regarding products from China, mostly from teh massive lead poisoning issues that have happened. Plus we like to buy local, as local as possible in all things. But that doesn't mean we have to bash a whole culture, you know?

And I realized too that I know very little about China. I mean, I have seen Mulan a million times with the kids, and I know I like crab Rangoon, and I can point to China on the map....and that's about it really.

So what better way to organize our lives and learning than to have mama learn some more about China? And that's how we'll do this, I will learn and do projects and if they are interested then they can too. I plan on creating a syllabus, with books and supplies provided for each mini lesson, here on the blog, in case anyone wants to replicate what we are doing. Label will be China, Dragons, and Yummies.

A brief summary of items we will cover in the groupings:

Art: watercolor, calligraphy, kite making, origami, paper making
Culture: Tea ceremonies, religion, etiquette, medicine, agriculture, puppetry
History: Time lines
Geography and cooking are paired. We'll study regional cuisines and cook them every week, in reference to regions and types of ingredients. Food can really be a good way to teach other aspects of culture. Plus, YUMMY. Oh, and animals. Geography=animals to my kids. Maybe a zoo trip.
Science: inventions, building, medicine, agriculture, earthquakes
Math: fractions in cooking, calculating for science, abacus, money measuring, weighing
Reading: stories and books from China, about China, writing to a pen pal, writing messages in cards, creating fortune cookie messages, calligraphy
Dragons. My kids like dragons a lot.
Chinese New Year and holidays.
We plan on attending the Asian Festival here this year too.

Things I have purchased so far:

• A calligraphy set, a real one with ink and stone and hair brushes and bone chine dishes. Not expensive and yes, made in China.
• Toy dragons. Yes I did.
• Paper dragons to hang from the ceiling.
• Real stainless steel chopsticks and bone china spoons
• Cast iron tea service
• Tea
• Books on calligraphy, craft and building projects, books on Chinese history for kids, Chinese mask book
• Pandora, Traditional Chinese station
• Netflix, Wild China and Studio Gibli movies. Dress up clothes with Chinese theme.

We'll start this October 1st ish. Expect lots of cute pictures of kids doing stuff and cooking. These items are on the shelves and ready to explore. We already listen to the music every day. At the end of the week, we'll have lunch at the local Chinese buffet (yay rural Iowa!). We'll cook from the recipe books twice a week, maybe more at lunch time.

Each time we do an activity, I will post book and supply list with links to Amazon.com isbns, mostly because that is where I shopped for the stuff.  I'll also post a reflection on what worked, ect.

I'd love additional ideas to work in too.....and that's about all of it. The ideas of it all will unfold as we live it. The girls want to trade out our dining room table for a lower standing coffee table so we have to sit on pillows to eat meals. Is that even how people eat in China? Where did they get that idea?

Last night after the kids were all tucked in to bed dreaming (ie passed out in the living room watching movies), I walked to the mailbox. I took a deep breath of fresh air, gazed up at that great big universe of twinkling and shooting stars, thanked God for our farm and that I survived another game night, freaked out a little when the cats jumped out at me in the dark, only their little devil eyes gleaming.

In the mailbox was the final report from the ENT. So many times, the in person visit/results tell us one thing and then the report comes and it is totally different.

But here it was in writing. Zap has perfect hearing. No more fluid. Cleared from needing follow up. No surgery required.

So grateful. Not that I was scared or worried about him being deaf, he would have rocked that out of the park and we would have learned right along with him. This however has been a test of faith, of prayer, and a demonstration of how God works in mysterious and wonderful ways. He put in our lives the right people, the right healers, and the open hearts to try non traditional medicine. Now my baby doesn't need surgery.

For the record, I think that the tinctures we have been using for various ailments have made a HUGE impact in our health, but when I take ground ivy tincture, even my ears start draining. I was skeptical, but two of my good friends and people I really trust recommended it. I am so glad. Zap asks for it and points to his ears. It doesn't taste great so I can't help but think he understands what it is for.

Which leads me to another thought.....as parents of special needs children, dependent on the medical community for the health and well being of our children, but also as people who believe that natural remedies and good nutrition can be the best even better medicine, we are like rocks in a hard place. The balance is a hard one, and everyone walks that precipice with different shoes- some dance on by, some shiver with anxiety, some jump, some just curl up in  a little ball and beg to go home. We are all there though, at that same horizon, that same scary hard to explain place- feeling alone and isolated and misunderstood. All of us, the kind nurturing mothers, the fearsome bear mamas, the bitches, the fragile, and all of them are all of us. Some of us are hard for the nurses to deal with and some of the nurses are hard to deal with. It is a complicated dance, but really we are not alone.

Facebook has connected me with families all over the world who have 22q children, with published authors with the dx, with expecting mothers full of fear, with families whose children are near death, thriving, struggling, all of that. Life is messy and wonderful and short. One of the hardest things I have learned is that I can reach out, cry, ask, and help. Just when I was feeling the most alone, the world got a little bit bigger and more loving.

FB has also connected me with more families near me with special needs children or deepened casual relationships I already had.

This last 18 months has been interesting.