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.

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.

And do not be grieved, for the JOY of the LORD is your strength.....Nehemiah 8:10

And do not be grieved, for the joy of the LORD is your strength.....Nehemiah 8:10

Yesterday a little girl with 22q deletion syndrome died. She died with family that loved her and a community of thousands cheering her on daily. When she was born, my friend Jennifer adopted her, knowing she had 22q. She died after a year of surgeries and interventions that included having her chest cracked open and left open for machines to keep her alive. Through it all she shone her huge personality and light for the world, and her mother was generous to share her with the world through near daily updates.

Joy mattered. She changed my heart in so many ways.

Chad wrote this, and I cannot say it better:

I've posted a few times here about Joy, a little girl with the same genetic disorder that Isaac has, but with all of the major complications that Isaac has avoided. Joy was as hardcore as anyone you can name, and she fought as hard to live as anyone could have. Joy died this afternoon - she was just over a year old.

Her story was recorded in very near real time here - Joy's Journal. It's sad, but it's worth looking through to see some of what families with special needs kids go through. Joy's story was particularly heart wrenching, and through that she brought many people together in support of her and each other.

Joy was important. She will be missed.

Before Isaac was born I became so annoyed with a fellow homeschooling mom who posted near daily updates about candle vigils and baby memorials for people she only knew from the Internet. I ended up blocking her because it annoyed me so much. How could a stranger be so emotionally involved in the death of another woman's baby? So emotionally involved that she changes her profile picture every week to honour a different dead child that she never knew in real life? It seemed to me like borrowing trouble, funeral chasing. I know. I was a horrible person. Those of you who know me, know how I feel about blocking people, I just don't do it.

Since then, asking those questions out loud (be careful what you wish for y'all), I have been given the gift of knowing why and how. Joy's struggles were a testament to the human desire to live and love, to strength of spirit. Her mother fell often to her knees, reminding us all that we were blessed even in the darkest times. Praising God when most of us would have walked away from faith.

I often wondered how this group of 22q moms could possibly tolerate me, let alone welcome me into their confidence and friendship. Isaac is not struggling with medical needs. He is not sick all the time. He has never been hospitalised. The truth of it is that the future is unknown and these women KNOW that. They know that life and health can change near overnight and that a healthy, vibrant child can lose all colour and spirit and meet with Jesus in the morning. 22q does that. They know that, I know that. What they also know is that finding our own Joy, to live each day in her light and warmth, is what we must do. When the darkest times fall on us, we fall to our knees, and we walk through each day with grace.

In the meantime, we are human. Last year another 22q warrior, Jacob, died. When I first met his mother Becky, my foot went directly into my mouth as I said to her that her updates made me terrified as I held my baby, that the unknowns of life with 22q were overwhelming me and her stories left me dreading the future. She had quite a few words to say to me and the other mom that were feeling this and none of what she said was cruel or untrue. 3 years later, I know her more, and I am so grateful for her patience and grace. She had 15 years with Jacob. He mattered to all of us. All of the 22q children matter to us. We share with each other our fears, our frustrations, what we wish we'd have said to an incompetent medical professional, what we DID say, and sometimes we fall apart. We also share the joy and value that each life lived can give to the world. Jacob and Joy both had a life of peace and happiness and their lives were not tragic or sorrowful. Should I be terrified of that? No. Not even a little bit. By Becky and Jennifer's example, I am more gentle with everyone around me who makes careless or stupid remarks like I once did (will again, knowing me).

I am heartbroken on this winter day. My tears froze to my cheeks and fell like icicles into my hair as I brought in firewood. Grief stabbed at my heart for a child and a mother that I have never met in real life. Tonight, we will light a candle and pray for them.

Joy was adopted. People often ask why would a family adopt a child with so many medical needs. Why borrow the trouble? The answer is because that child matters and is important. That child needs love as much as any of us. In that, Joy was flooded with love and prayers and all of us can still only do that.

Please forgive me as I stumble through these emotions and thoughts, if I have worded something in a terrible way or not conveyed what I meant. I will try again once my mind and heart are healed a bit, which may be a while. Please take the time to go to Joy's page, Joy's Journal, and read about her. Pray for her family.

As Jennifer would say, WE ARE BLESSED. 

Happy Birthday Little Buddy, Science Center Style

Isaac had so much fun that we bought a membership and plan to go back every other week as weather allows. Happy birthday buddy.

Drinking Coffee, Tea, and Other Warm Beverages

Caramel Latte is one of my favourite all time drinks. The one in the picture had way, way too much syrup and it was clearly not real caramel. So disappointing to drink, but very pretty to look at.

Now that the weather is quickly cooling and we will soon rival temperatures and wind chill with Siberia (not kidding y'all), I like to play around with warm drinks.

I do warm cider with cream, from scratch chai latte, coffee, hot chocolates, warm teas, spicy teas, herbal teas..... but the real trick is not actually making them yummy. That is easy, no the real trick is making them still taste yummy after I add in a 1/4 a teaspoon of fermented cod liver oil.

Yes. I said it. Fermented Cod Liver Oil. This has got to be the most foul smelling and tasting thing anyone ever has decided was something people should eat. God forbid it spills and the clean up rag ends up in a forgotten laundry hamper only to curse the house with a fouled up washing machine, losing 5 towels to attrition, and ruining several good sweaters. That is like the worst level of laundry hell, I kid you not. So why, oh why, would I even bring that into my house let alone feed it to my children? Vitamin D. I refuse to use synthetic. I do not even give my kids a multivitamin, I prefer to make sure their food is rich in nutrients of the digestible and usable kind. Still, with Isaac's immune deficiency and known Vitamin D (actually a hormone) deficiency (34 was his last level), I decided to give cod liver oil a try. Bonus, it helps with chronic constipation that plagues 22q kids but Isaac has never had issues with. Nope. Never. Are the two related? Maybe.

We also do not use sunscreen. We eat Vitamin D rich foods like mushrooms, fresh pastured lard, grass fed butter, and fish. We go outside all year round and stay out there in the sun. We have Happylights. Crazy talk, I know. Seriously though, I work mushrooms into so many things here it isn't even funny. I hate mushrooms. Hate them. For the benefit of our health, I got around my own personal issues. They go in the bone broths and I puree them into meat balls and sauces so there is mushroom of some sort on the table 3-4 times a week.

Why not use synthetic D in pill or gummie form? There are a lot of reasons, synthetic D reacts with calcium in a different way and 22q kids have issues with calcium levels. Low calcium leads to seizures. Natural D does NOT have this problem. The kicker for me was this mind blowing fact- vitamin D isn't a vitamin- it is a HORMONE. No way am I giving my kids synthetic hormones. Nope. Not ever. Not when I can do the same thing naturally and with food and a couple fancy light bulbs.

So that brings me to to the fermented cod liver oil. I do not use it every day. They get it in their warm drinks on cloudy stretches in the winter. Today the kids played outside for 90 minutes in the sunshine, even though it was cold. They came back in with better attitudes and flushed cheeks after planting acorn seeds they found (Isaac got to help), hauling firewood by the arm loads (Isaac watched), and generally running around in the grass chasing each other. Today they did not need it. I usually start giving it to them in January and through April, depending on our weather here in the Midwest.

I am getting pretty good at being a sneaky barista, but last year my kids found me out and mounted a political campaign with protest signs and a chanted slogan (MAKE the DISH without THE fish......OIL. They took turns supervising food preparation to catalog ingredients. It was hilarious. This year, I plan on being honest about it.....when they ask me.

I would love not to have this in my fridge though. What kinds of things do other folks do? Ideas?

Keeping Up Appearances

 A really insightful discussion this week, jumping off of this article, got me thinking. Appearances matter in ways that are more complex than most people stop and take time to consider, but not just the way we present ourselves, other signals like language diction, vocabulary, and body language also cue to people our financial and social status and this matters. 

It shouldn't, but it does.  It matters when we shop. At the grocery store, if I don't dress up from my usual jeans and t-shirt, I always get asked if I am using food stamps. I have even been on the receiving end of snide comments about using food stamps even though I never have.

I have been ignored in shops because I look poor. I was even asked to leave once. I get that I look young. I look poor. I do not look like my place in society- which is an highly educated, white woman in her 30's, married, with a stable 2 income household. I have the privilege of using my appearance to my advantage and I can easily code switch between two worlds. That is the true privilege of social mobility.

This I can deal with. It annoys me. It worries me. Still, it is not life or death.

When does it matter though? It matters to folks who do not have the ability or have even thought about the disadvantage of not being able to move between or present themselves a certain way.

It matters at the hospital.

It matters in the emergency room. It matters in the NICU. It matters when talking to specialists.  I have had a few doctors and nurses who it doesn't matter to, but they are the exception. I make a point of having my iPhone out, dropping references to my job (college professor) and my husband's job and I see them flip the file and double check the section that has that data. I am careful about my grammar. I choose my shoes carefully too.  I bring a binder and any article I reference I keep a copy in there, I also have PDF's on my Google drive and offer to email them if need be. I am sure to cite studies from resources I know that are taken seriously by the medical community, CDC instead of NaturalNews for example. I wear expensive earrings.

Do these things actually matter? In my own experience, yes. If I am rushed or tired and forget this whole production matters, things do not go as well. We don't follow recommendations by our doctors blindly without questioning and many are not used to that. I have to be prepared to meet their level of intellectual code and clearly I can. I have that privilege. What happens to folks who do not? The answer gets more complicated. Part of me fosters a certain kind of fear. Many of the choices we make for our family are the same things that people get their children taken from them for- selective vaccinating, refusing formula for a failure to thrive baby, co-sleeping, spreading out well checks- just a few examples. Somehow I managed to gain the trust of our doctors and caregivers that I am capable of making the decisions without harming my children while a 17 year old, near homeless mother loses her children. I can't help but wonder if my social privilege of education and knowing when certain presentation of things matter because they do actually matter.

It is one thing for these things to make a difference regarding how a grocery clerk and customer treat us, it is a life or death game when seeking medical care.

Another incident sticks out in my mind. We were going over test results with a specialist. He's a great doctor and was very thorough and respectful, willing to work with us. However he ordered a long list of tests just to cover all the bases. One of those tests was the FISH test that diagnosed Isaac with 22q, but there were 15 other tests he ran too. I was fine with that. We followed up. We followed up at his request several times. Each time, blood work and physical exam showed all good things, progress, not more complications. Each visit was $450 out of our pocket. When he asked for another follow up, I explained that to him. I also had concerns about how we were billed for the CAT scan (a $5000 facility fee was tacked on and I wanted to know why and what this was for). He was surprised at the fee, said it had to be a mistake but he was also surprised because he thought we were on Medicaid and Title 19. He said it was not actually necessary for us to come back again and signed off on Isaac's care. 

First, I had the know how to navigate the bitterly cold and horrible waters of hospital billing to ask these questions. I had the privilege of being able to read the bill, the time to spend on hold, and the language and communication skills to make progress. Eventually, the bill was lowered to $1,200 but it took taking to the level of legal action to get them to actually prove to me that the billing was legitimate. That is a huge difference and mistakes and bills like those can push families into financial ruin and poverty.

So let's not just shrug off the value of this privilege. Let's not say it doesn't matter. Instead how about we coach other families and advocate for each other. It is a code that we need to be able to navigate and switch back and forth from if we want the best possible care for our kids. We know that being jerks and yelling and swearing at the medical professionals will knock our actual care and experience down a whole lot, but it is more than attitude that matters.

So I present to you a list of things you can do when you can do them. So much of me, especially the feminist in me, wishes these things didn't matter, but they do and we can use them as tools.

1) Nicer shoes. Start there. Get a special pair just for doctor's appointments. (Good for germ management too, by the way.)
2) Tie your hair back into a bun. This is easy, even if you don't have time to groom your hair. I have a special clip just for this. I can do it in the car at one stop light or in the ER waiting to see the first doc after triage.
3) a light coloured lipstick or gloss. Not bright, not garish, but something.
4) A cardigan or sweater you can pull on over whatever you are wearing. Expensive looking earrings. I keep a pair in my purse just for this. This makes jeans and a T-shirt transform into something just enough classy that it makes the difference.
5) Speak carefully, make eye contact. Do not use contractions like don't, can't, y'all, ain't. Don't get chatty. Don't ramble. Speak carefully and softly. Make them listen to you when you speak and make it count.
6) Take notes. Ask questions. Ask them to repeat things and define words.
7) Ask for copies of everything. Keep it in an organised binder.
8) Stay calm and sweet. This doesn't mean play dumb, it means stay cordial. Check your sarcasm at the door. Losing your temper and storming out needs to be a very last resort. Even if you never ever come back or switch doctors or file a complaint with the state board, causing a scene looks bad on you not them. Last resort only.
9) If you know you don't do this well, get an advocate to go with you. Other special needs moms are fantastic as a resource. Choose someone who can play the game and get taken seriously.
10) Cry in the car. Cry at home. Never cry on the phone or in front of them. Unless your kid just survived a code or some other major thing has happened, then totally break down on the floor, fall to your knees and sob. Crying over being frustrated over billing or rude receptionists needs to wait.

I wish these things didn't matter. I wish they didn't matter more for poor women or families of colour and ethnic background. Clearly dads don't have to wear lipstick. These are things I do because I have experienced better care for my special needs child when I did.

What about you? Do you have any experiences to backup or argue this phenomenon? Tell me you think it is bullshit, tell me you agree. Let's get some dialogue going, y'all.

Something No One is Talking About, But We Need To

There is no delicate way to write this. There is no flowing prose to soften this blow, to make everyone feel better about this not talked about subject. Yet, this is what has been flowing around my raw and messed up head lately.

We go to a lot of doctors appointments. We have a lot of blood draws done. Two of my children have bad teeth so they end up having painful things done at the dentist. These experiences are what brought me to these thoughts.

I also have to state that the folks (with the exception of the evil horrible no good dentist) are all good people who are not trying to hurt my children, they are trying to help. No. What I am going to talk about is the system we all consider normal, necessary, and the way things are done. I am proposing that we change that, but honestly I have no idea where to even start.

I began this series of thought when discussing birth trauma with a friend, many things about the way birth is handled in modern hospitals is traumatic to women, they feel powerless, and are even abused physically though it is for the safety and health of both them and the baby. Many women are outright violated by strangers and it is accepted because that's how OB medicine works. Many birth activists are creating change in this area, both in process and in empowering women with information.

Great! Yay! Cool. Progress.

I was holding down Isaac for his yearly blood draw, he was telling me that he is a brave boy, like a bear! and I was cooing that it would be over soon, he is a good boy, I know it hurts, but it will let us know if he is still healthy, I love him, and his sisters held his hand and sang to him while he was restrained by us and in pain.

What are we doing to special needs and medical needs children? I know what I described sounds like a loving mother, helping her son through a routine and necessary procedure so let me keep going.

What about this? My 8 year old had to have a tooth extracted and the dentist decided to pull three instead, without telling us, and knowing that the pain meds were not working. He said to her, be still, be a good girl, it will hurt you if you are not still. She said that she would bite him, and she did. He withheld the prize at the end, said a few nasty things to her. It was awful. Yes, I filed a report. Let's look at the situation though, without jackass dentist being a jackass. Young child held down, in pain, pain being inflicted, being bribed with  toys and rewards, told be a good girl.

Are we grooming our special needs children to be victims? Trust me, I am not victim blaming here, I do no believe that victims are at all at fault to the evils inflicted on them, NOT EVEN A LITTLE BIT. However, we also as a culture acknowledge that predators of a certain kind will condition and court their child victims. What I am asking is, are we doing that? Are we setting our children up to submit to pain and terror by people in medical authority because it is medically necessary and does the way that we do that set them up, condition their personalities to more easily submit to others in authority who might abuse them?

Abuse of special needs adults is something we talk about as a culture, and physical abuse of special needs children has made the news too with the "quiet rooms" and deadly restraint incidences.... but that's not what I am thinking of this time.

Here's what is going to be hard to talk about and hard to wrap our minds around- I am talking about sexual exploitation and abuse. Too often, when I am holding my children for medical procedures, the verbal comfort from nurses and even me sounds exactly like what rapists say to their victims. It will be over soon. I know it hurts, but it is for your own good. You want to be healthy, right? I love you.

When the baby grows into a toddler and young child, when they know enough about what is happening to be afraid? The nurses at one visit were upset that I told my daughter that the shots would hurt and that I was sorry. They told me it is better not to let her know and just go and do it. We tried that once and she had nightmares for weeks. A sneak attack is wrong, so wrong, but completely excepted!

Young children have the intelligence to know and fear pain, but not to process the whole it will be over soon, for the greater good internal argument. We are violating their bodies with exams, shots, blood draws, tooth extraction, and a lot of other things. Medically necessary is a concept that adults understand and children do not, so we victimise them over and over again, holding their hands and cooing at them that it will be ok, that we love them.

I don't know how to change this. I read about a drug some doctors give children called Versed that will eliminate their memory of the event. Immediately I thought it was like a date rape drug and was shaken by the idea, but the more I consider it, I certainly would prefer this to the nightmares and anxiety, if the drug works like they think it does.

Lily has asked me to never take her to a male dentist again. I don't know where she got the idea that a female dentist would be better, but that was her gut reaction. She fights back. She can tell me her concerns and fears and I help her make choices and feel empowered. Isaac is non-verbal. Many special needs children have communication issues. What about them? What are they feeling? How can we empower them through painful and invasive exams and make sure they fully understand good touch and bad touch? Will someone evil take advantage of their vulnerability and inability to communicate?

The painful answer is that we can't. Not for all of them. Our words and actions and methods for how these procedures, routine or major, has to change. We have to consider the whole person that they are or we'll be fixing their bodies but breaking them on the inside. PSTD and anxiety is already a major issue with special needs children. If we do not consider the full ramification of this, it will eventually be just another headline we don't talk about.

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.

Big Complicated Feelings

Grief. Anger. Joy. Fear. Love. Hope.

How is it possible to feel all of these all at the same time? I am not sure.

Sometimes when I look at Isaac I feel all of these all at the same time. All of them all at once hitting me in the heart like a sucker punch. I fall to my knees, sometimes I cry. Sometimes I cry myself to sleep at night. Sometimes chopping onions gets the waterworks started, driving alone at night coming home from work and the song 22 comes on and in my head that song is all about 22q deletion syndrome and not a group of spoiled hipsters, or in church, or at the park.

I have become a master of hiding my tears until I am alone.

I am not crying for sadness, not really. It is complicated. At the park, Isaac starts playing or conquers a new task, a big one, and then a kid half his age barrels past and does it with ease. I am proud of Isaac but sad for him too, that he has to work so hard to do what most kids take for granted. I love him so much! He's so brave and patient and wonderful.

Then I get terribly scared for him. He has a genetic defect.

Suddenly it seems like all the sci-fi movies I watch are all about mutants with genetic defects and how basically society wants them all locked up and killed, even if they look or act normal. Alphas. X-men. Gattica, Brave New World.....this list is long. People in our culture are afraid of genetic defectiveness and medical difference. There was a facebook page that was all about killing autistic people because the page claimed that they are all murderers waiting to happen.

History is pretty clear that every so many decades people, normal everyday people get behind the idea to kill off the medically fragile or disabled.

My son has a genetic deletion. This strikes fear in my heart for him like nothing else can. His deletion does not make him look different, noticeable, so he can pass for normal eventually if he learns to talk, the mere idea of this makes me queasy to even think this way.

This is why the awareness campaigns make me nervous. We, the caretakers and families of these fragile children, are we making them easy targets by tagging our cars and ourselves with pride ribbons? Are we? Does the general population need to know about the hundreds of different defects possible in children? How does that help? Why not focus the energy on the folks making the diagnosis, the medical colleges and nursing schools? How is a jaunt around a lake helping?

Then my mind comes back to the park, and the joyful noise of my children playing and laughing and living in the moment, and I have lost being in that moment because my mind has drifted into the lost sea of what ifs and worry. I need to anchor in.

This is where my faith comes in. I pray to a God that is kind and is love. I pray that humanity is moving towards a way of life that will protect my children and their children, embrace their fragile difference, and participate in the joy that they create. My faith that God will protect us has never waivered, but sometimes I drift away on the undercurrent of worry.

Jeremiah 29:11 (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Today Holly and Lily asked if Isaac can play in the snow with them this year, last year and the year before he was too frail and still just crawling and the weather was so severe that I did not let him. The snow would have swallowed him up.  This year he has a snowsuit, boots, and waterproof gloves. He will love it, I know, but I am still afraid of the snow.

Just like I am still afraid of my own society and the humanity in the world swallowing him up. History repeats itself, it is just a matter of when and how. I cannot even watch or read the news anymore because stories of children with special needs pop out at me and if they make the news, more than likely the outcome is terrible. The teenager with Downs being killed by mall cops at a movie theatre, the mother of a severely disabled teenager murdering him and then attempting suicide because there was no affordable care for him, rape, murder, a child with a genetic disorder being denied a lifesaving organ transplant because of her disorder, the list just keeps going and going and we are becoming more aware of all of it. Is that a good thing? Is that the awareness we are seeking?

I am plenty aware, what I need instead is hope and compassion.

Recently I had a conversation with someone I love so much about white deer and she said that it was a genetic defect and they should all be killed so they don't damage the rest of the healthy population. I seriously wanted to vomit and at this moment, maybe she didn't even notice, I cried in public. In the middle of the museum my tears flowed freely. I was silent then I tried to make light of the exhibit and explain that the law against hunting white animals protects unicorns too.... but I was broken on the inside and my heart was shattered.

My heart was broken in to millions of tiny quivering pieces, because that is what people think of my son. Not all people but enough that it makes the world we live in dangerous. Even families in the 22q support group have discussed sterilisation of their children so as not to pass on 22q to another generation.

I blurted this all out to my aunt as we approached the mammoth exhibit. Of course she didn't mean that, that way. That's people. Animals are different. Of course I knew that she would never be that callous to intentionally say something so hurtful, it is her husband Isaac is named for- the fire chief, small plane pilot, car mechanic, ect who also happened to be deaf and paraplegic. If someone said he couldn't do something, he turned around it did it x10 and in their face.

It doesn't change the fact that there are people in our community who do feel this way about our children. Be aware of that and hold guard because there is no registry for psychotic assholes, no ribbon, no walk or 5k, no warning.

That's what is on my mind tonight.

The Hungry Caterpillar (aka Tobacco Hornworm)

Lots of children catch caterpillars, lots of families let them keep them in a tank. We do this every year and they often hatch them to butterflies or moths.

What is special about this time isn't the activity. This is first year Isaac has been involved in the activity. Sometimes his physical delays cause us to forget that he is almost three. He is almost three years old. That is so amazing! This day in the photos he spent about 20 minutes watching the caterpillars, he lay on the floor next to the tank, pointing and babbling and cooing while I made lunch. He would walk in and check on them a couple times an hour through the day. He gave them bits of his snacks through the top hole. He even reached in an pet them a few times. The girls set one on his leg and it scared him a little, so they backed off of that.

It was amazing.

In general it is so easy to underestimate the working mind of people with physical disabilities. Holly often reminds us that Isaac is a big boy trapped in a baby's body. He can read. He can count. He can think about things that he can't ask questions about and so we don't think to offer explanations. He is curious.

We also started sign language class last week and it is going very well. He's picking up alphabet signs faster than I am and really loves the music. Lily loves it too, but I think she also enjoys being his assistant in learning at home. His verbal language is coming along too and since he can read about 20 words, we think, I also started putting up large magnet words on the magnet board. Today I told him to get me the word that means Dada but starts with an F. He brought me FATHER and then kissed it. It was adorable.

This experience this week served as a reminder that Isaac is so much more inside than his little body holds him back from. This is why we push forward to make him stronger, braver, and more patient each day. In doing so we are also becoming stronger, braver, and more patient with each other and others.

22k(ilograms) for 22q - a Challenge I am Struggling With

Running. I have a long and complicated, even stormy relationship with running. I often joke that if you ever see me running, don't ask questions, just you start running too because something horrible is chasing me.

I loathe it. I think that may even be a kind way to put it. Just reading about my wonderful friends joyously 5k running or mapping their energy boosting jogs makes me throw up in my mouth a little. Not because they love it, but because the idea of running for fun make me feel ill and like punching someone all at the same time.

I love walking. I love swimming (in clean water free of man eating giant prehistoric shark turtles). I love cooking, dancing, swinging in the trees, soccer, even riding a bike now and then. But running elicits the fevered terror of gym class, reminds me of being the last one to walk around the track, being yelled at because the class won't meet its goal if I don't MOVE faster, and walking in the hot sun anyway. Forgetting how many laps I had already made and being forced to go one more time. It reminds me of humiliation of the locker rooms, shower checks, being locked in my locker as a joke. It brings back being mocked for not being physically able to meet the goals of gym class. I was healthy enough, but I was physically small. I am a midget, a dwarf. My legs are shorter. I have less muscle mass. I also did not enjoy the aggressive competition.

I remember doing really well at badminton, something I played at home for fun. I made it to the final round, against the class athletic star. The longer our game went, the angrier she got. She grunted something about not letting this girl beat her. She said it with such ferocity that I immediately let my game go to crap. I stopped playing. If I beat her, she would later beat the crap out of me. That is the scenario that comes into my head when I think of exercising or athletic work of any kind.

So how do I stay fit? I dance while cleaning. I walk with my kids. I farm. I do any number of things that also completes a needed productive task. Hauling buckets, carrying produce and freezer inventory, moving laundry baskets are all things I do near daily with ease. Sure sometimes I also run, chasing pigs back to the pen or out of the way and over the fence when Blizzard the ram gets to remembering that he hates me. I can move fast under those circumstances. I have to.

Still, as a child I loved sports. I actually competed in a regional free throw competition and won at age 9.  I never played on a team though. Now I use my near magical shot to slam dunk dirty diapers into the laundry pail or toss apples from a tree into a bucket. Useful. I have athletic ability and I am capable.

My sister was the team sports player, but even then, she fought to play baseball instead of softball and lost when we moved to Iowa. The unfairness of that hurt me too. The gender bias in sports is still something that makes me bitter and hold me back from enjoying recreational sports watching.

So why am I sharing this?

Because I am going to run.

Because my son has 22q deletion syndrome.

Because this is bigger than even that. I need to stop running from all the awful I associate with everything and recover from everything I have been through.

My friend and fellow 22q mom Samantha Block has posted a challenge:

Some of you may have heard of the International 22q Foundation's 22k for 22q event.  The idea is that you run, walk, bike, or swim 22 kilometres to spread awareness and fundraise for 22q.  It's a great idea!  Sign up for a couple local races, or form a team and sign up for just 1 local race then add your kilometres together.  Wear a 22q shirt and get some pledges from friends and family. 

I thought I'd do a spin on that.  22 *kilograms* for 22q.  What do I mean?  I mean let's all band together and support each other while we work towards making ourselves healthier.  In doing so, we make ourselves better equipped to face the challenges of raising a 22q child.  22 kilograms is about 48.5lbs.  I would love for a couple dedicated followers to join me in pledging to lose a combined 22 kilograms in the month of September.  If I get 10 people to do it, we only need to lose about 4.8lbs each!  Totally doable!  If you all spread the word and we get more people joining us, I might just get to add a zero to that number and make it 220 kilograms for 22q!  Wouldn't that be awesome?!

All day long I thought about Sam's challenge. I grumped and grumbled. I listed all the reasons that I can't do it. I can't run. I won't run. I hate running.

I am running away from running? How ridiculous is that? So, I'm in. I am doing this. My posts about this will have the labels chasing normal and 22 deletion syndrome so they will end up under the top bar tab. I hope all of you will cheer me on as I do this crazy amazing thing for Isaac and for all the 22q kids out there.

Because I need to do it my way and make it mine, I will be running while doing things at the farm. It may look more like a pastured run. The sheep can verify my progress. I won't do things like public races, because I am not there emotionally and I will not torture myself with that yet. I will do that when I am ready. First I have to stop hating the idea of running and that means gaining ground on my own turf. I bought the shoes. I broke them in. Now I need to step on the ground and just do it.

Also, there will be pie. There will always be pie. I am doing this my way, after all.

I will run so I can be even healthier and be that much better at what I do as a mom and farmer. I will help others with recipes and encouragement. I will be a part of this team (and no one will beat me up afterwards, right?). I can and I will do this. Every single step Isaac takes on the ground has come to him with three times the work as it did for his sisters, 22q has done that to him, a big boy trapped in a baby's body. Yet, every single day he wakes up laughing and gets up, works hard until the end of the day, and earns his good sleep. If he can do it, I can too, for Isaac and one step at a time.

That One Time I Called My Child a "Stinker"

Isaac is adorable. It is his super power. He doesn't throw tantrums. He begs sweetly instead and no one in this house can resist his signs please and sweet puppy eyes. He recently learned where we keep the free access snack and fruit. One morning he pushed a chair up and got out three bananas.

I exclaimed, "Oh my, you little stinker!" I did not do it in a scolding voice. Rather admiration. He melted. He just melted into a pile of silent and brokenhearted sadness. Holly ran to him, looked me in the eyes and scolded, "Mama, he is NOT a stinker. You should not call him names!" He looked up at me, tears rolling down his cheeks, and my heart broke a million times. I scooped him up and we sobbed together.

Children do not understand name calling as an affectionate exclamation. They only see it as someone they love is calling them something that is a bad thing.

That is when I stopped calling him my little stinker and Holly my sweet monkey butt and Lily so very impossible.

Now Isaac is my little super hero! Holly is sweet ballet dancer! and Lily is the impossible astronaut! (Her idea.) It is just as easy to use a positive name in the situation as it is to use a derogatory one.

Holly later explained to me that Isaac is a big boy trapped in a baby's body and he is so invisible sometimes that we forget how big he is inside. She's spot on. That's pretty much sums up Isaac. He is so sweet and silent too that it is easy to forget that he has these HUGE emotions going on, like all almost 3 year olds do.

I want my children to know by my words that I love them, to know by my hands that they are loved, to know by my voice that they are heard, and that they will come to know how much I love them by my writing. Someday they will find this, maybe I will be there and maybe I won't. Life is like that. I want these daily exercises in recording our activities and my thoughts to be my love letters to them. This writing can't be that if I call my children lazy or stubborn or fat or any other words out of frustration with them. They may have moments when they are tired and refusing to participate in what we are doing, but that is human. They may have breakdowns or bad days, but don't we all? I do. Less and less though the more I model for them centering myself and gaining control over my own words and actions because they see that, they hear that- not empty words but the action of my being. I am their mother after all.

So if I seem overly adoring of them, this is why, I love them so very much. I want them to know me and know that. I would not want their future employers to read this and say, "Wow, no way and I hiring that lazy brat who refused to do their spelling worksheets and take out the trash! No way!" Not that we do spelling worksheets like that. You know, unschooling. Ha!

No, this is a record of sorts, as are my public facebook pages, for all to see into our lives. Sometimes it isn't pretty, but it won't be ugly like that. It will be brilliant and sparkly and three kinds of awesome.

Comparing Blessings

Which one is more full? Can you tell by looking?  Nope.

 

One of the things I found myself doing as a new mom when Lily was born was I compared her to everyone elses' babies.  Her cry was distinctive. She could talk very early. She crawled late, walked a little later, she was gorgeous and funny. Potty trained herself at around 13 months old. Was I happy enough? Was she happy enough? Did she make friends easily (I do not)? Was she eating enough, often enough.....she was a clothes size over her age sometimes 2!

Holly came along and was the quiet one, but she crawled early. She then walked late. She refused to talk until she was two. She refused to potty train. Refused. We cloth diapered. We wore her. We gave her watermelon. Constantly measuring her progress against my peers kids and the child development books. Also a HUGE baby and child. (No one panic, she is now 5 and uses the potty.....) I slowly learned that each kid is their own person, their own timelines apply, and I would just need to roll with that.

Then Isaac was born. I knew from Holly's babyhood that sometimes kids just take their time. As it became more and more apparent that Isaac was falling behind in milestones and growth, he stayed in premie clothes and then in newborn, 3-6 month sized at a year old. He was diagnosed with 22q deletion syndrome at age 5 months. As a baby it is easier to pass at the playground. Everyone we don't know just assumes he's actually a newborn. As he got older, even crawling, the playground introduction is always followed by, "How old is he?" and the answer is greeted with politeness, but the shock or realisation on their faces says enough to make my gut drop out and make me want to throw up. At that point I usually blurt out his dx and start making excuses, explaining hypotonia.....but it makes me feel ill. It does. Random strangers don't have a right to his medical information. His life should not be his mother making excuses for him. Eventually, he'll begin to understand what that means and it isn't good.

Still when my friends were posting pictures of their 9 month olds walking, cheering with joy at these first steps, I held back tears and my own fears as Isaac was still just crawling at 28 months. I would sob at night. I would question the decisions I made for his therapies. It would consume me at times and block out all other joy in my life.

I stopped doing that. Isaac started walking and I've been too busy trying to keep up. That day was so full of wonder and happy that I thought I would have a heart attack and my face would fall off from smiling.

It got me thinking about my own internal dialogue though. Stop comparing to other "healthy" kids. That part was easy, all I had to do was embrace and rejoice in how adorable Isaac is and how amazing each and every milestone and every day is full of love and happy. Isaac IS healthy, he is making progress, he is amazing.

What is harder is to stop comparing to other special needs children. This goes two ways actually. I found my heart reeling with fear when another kid, a full year younger, with a more severe diagnosis was walking when Isaac was just still struggling to crawl.

Then we'd meet a non mobile 14 year old on a ventilator and I would feel relieved about our situation. Then I would feel guilty for feeling better about ours by comparing to someone else's struggles. How horrible of a person could I be? Then I would get whirled up into fundraisers and fanpages of kids with Isaac's diagnosis who were actually very sick. I felt out of place. How could I offer our story to the collective support groups when Isaac, while slow on physical and verbal milestones, has never had a single surgery and never been hospitalised with an illness, not even RSV even though he had it last winter (just an ER visit). I'd do my part offering prayers, all the time guilting myself into sleeplessness because my kid is healthy. Compared. Someone would get another diagnosis or hospitalization that would send me into another guilt spiral. Why them and not us? Why do we keep escaping the symptoms of Isaac's diagnosis?

I'd read books about special needs families, hoping that folks that I don't know in real life might offer me a more objective perspective, a 22q adult narrative, a therapy book. I kept coming back to comparing what we do, what options there are, Isaac's current health state. Comparing statistics, comparing politics.

Compare.

That's the snare. I don't want my joy to be stolen by guilt and every time I compare in either direction I am racked with guilt and horrible feelings.  There will always be kids healthier than Isaac and there will always be kids sicker with greater struggles than us. We will slide between, walking the line and stumbling, slipping like it is wet sloppy mud. Just like Holly and Lily fighting over who has the most orange juice in their lunch cup, the fighting stops when I assure them that if they drink all they have, they will get more as they each need. Their needs will be met to the best that I can provide. They can relax and settle into saying what they are thankful for and eat and play. Their jealousies forgotten. I can meet my families needs and prepare so if they get worse we can be ready, hopefully.

Since being in this much better place in my own mind, I have found a depth of relationship I had never known with other families. I have found my voice.

That doesn't mean our struggle isn't real and it doesn't mean our joy isn't also a blessing. I used to think it was this grey area we fall into, this fog of in between, but that's not it at all. The world is not black and white with shades of grey and no one is promised perfect health always. We all have our own stories and our own struggles and we do the best we can to make the best life we can manage. Isaac is not a fog of grey, he is orange monkeys, and sea glass green, and bright neon pink Dora sock puppets, yellow bananas, melting raspberry Popsicles, summer peaches, and bright sparkling silver trumpets, and delicious blue skies thick with fluffy clouds laughing as he swings too high on the tire swing! This is the life!

Through my children I have learned  to stop comparing and be with them in that sparkling moment, their fleeting childhood, that magical place where their mother's love is enough and then some.

Perspective, Immunity Part 2

One of the things that being in the between of these worlds affords me is a perspective that is different from either extreme. This perspective is bias, but also educated. Recently there was a round of chickenpox in our community, pox parties were thrown, people rejoiced at the spots. I contemplated attending with my kids, one set of docs had ok'd it for Isaac. The timing was right as far as activities and work schedules go.  Still, I decided that the time was not exactly right. Not just yet. Then, there was an expo being held and one of the online mums asked flippantly if it was ok that her pox'd 4 year old came with her to the very public event. After all, everyone wanted some of the itch action.

Yeah. No. That is irresponsible. What if she had not asked? How many people like her would just bring the infected kid on out to the grocery store. After all, those who don't want it are vaccinated, right? Wrong. I have to be extra careful, I have to speak up and make sure that this kind of foolishness is stopped. Yes, I intend to infect my kid with chickenpox naturally, but I need the timing to be right, not for the infection to happen because some fool of a non-vaccinating family decides to create an outbreak. If you choose, like we do, to not vaccinate for some contagious diseases, you must, for the love of God, be responsible and mindful of your choices and not inflict them on other people. It is actions like these that give mindful parents a bad rap. Most of us research and study and know our diseases. Most of us know better than to take a sick kid into a room with a 1000 other people, many who are or work with or have babies. Recently a fully vaccinated child in our community contracted chicken pox unwillingly. How did that happen? May very well have been vaccine shed, but we don't know. Vaccinating families can be just as irresponsible post vaccination.

This is the fragile edge that I walk with my children. I have to take up the slack. I have to be twice as vigilant. I have to read so much more and understand and be able to explain and constantly justify my choices to doctors, to family, to random Internet strangers, to hostile asshats who decide that this is their crusade. I do this while wiping noses, examining the colour of snot, of poop, of ear goo. If there an infection, what is the viscosity, how much how often, then what? Constant. Always. On the clock. Listening to breathing patterns, heart rates, fingernail colour.

I get tired and run down. I have to keep myself healthy too. I am the primary caregiver and there is no vacation, no lunch break, no respite. We are in the middle of not just two worlds, not just between normal and medical needs, but in the medical needs world between the kind of needs that get extra services and nursing services and the kind that are just enough to be noticeable and require constant vigilance and care on our part to stay on that side of the rope. Like a giant Venn diagram, of NICU and normal and genetics and special needs, we fall in the grey area off to one side with the constant threat of shifting to the left. It is often a very lonely place that our family inhabits, where the naysayers say we are irresponsibly not doing enough or they say we are overreacting and nothing is wrong.

****

Last year a friend I have never met in real life had an idea and brought me on as moderator to bring forth a fantastic online support group, Natural Parenting of the Child with Special Needs. 

The link is to the gateway for the group. The privacy setting are set to secret to protect the privacy of the members (closed status lists names of members, secret does not), so new members send an add request to the message function of the gateway page.

This group of families and parents all over the world has helped me not feel so alone in this foggy grey area. Some have diagnosis for their children, others do not but have a vast array of symptoms that they deal with daily. There are families sharing recipes for special diets, others helping direct parents to other support groups (blenderised diets and the Natural Parenting Downs groups come to mind). So far, this particular group has been one of the most respectful, information sharing groups I have ever been blessed to participate in. I am grateful to be involved and a part of something so special. Discussions have included how to babywear a g-tube baby, how to ditch miralax and use real food for better results, benefits of donor breastmilk and how to re-lactate, what PANDAS is, and how to lessen post surgery PSTD for a child.

The very first week this group was up and running I knew it was something many of us desperately needed to be a part of, that we are not alone on this rugged unmapped island. That is my constant gratitude, that this group exists and has done good in my life. Through this group I have made friends in the 22q community that otherwise would have slipped through my newsfeed. I have made local friends, deepened relationships with friends I already had, connected with childhood friends who are now raising special needs children too. Amazing and wonderful.

Immunity

post vaccine rash, fever, and lethargy

Part of 22q11 syndrome is immune system deficiency. Isaac seems to have a thymus and a functioning immune system, though his labs are a bit on the low side. That said, he's only ever been sick one time aside from the few times we consented to vaccines.

After each vaccine he got really sick, for days. That's expected, I guess, for most kids. Except it isn't really. Holly gets really sick too and gets muscle cramping for weeks sometimes months at the vaccine site.

We vaccinate, but we do not follow the full schedule nor do we choose every vaccine available. This has been our choice before Isaac was born. We actively researched each disease and each vaccine and weighed the probability of disease vs reaction/symptom threat, factored in that I am a stay at home mom and our family homeschools. We mostly follow the Dr. Sears schedule, with our own modifications.

To break it down we do get the Hepatitis vaccines, but not when they are infants. We got polio vaccine done at age 1 because there is a new wild strain that has ties to an Amish community near us (or that's what our PCP said). We got the kids tetanus because we live on a farm and the kids are very active and it is bundled with some other things. We don't do flu vaccines, ever.  Chickenpox I hope to expose them to as a child and if that doesn't work, then they'll get the vax at age 15. MMR we intended to do at age 5 for the kids. Lily has already had one dose. When I was pregnant with Isaac our PCP advised against getting the MMR shot/booster for the girls at that time because of vaccine shed. With Isaac's immunity in question, he continued that recommendation.

That was the first time in all my research I had ever heard of a vaccine shedding. Up to 3 weeks he said. Since then I have done a lot of reading on this. Wow. The live flu virus vaccine shedding can actually spread the virus to the fragile folks (babies, cancer patients, immune compromised) we are trying to protect in the first place. Yikes. Folks who get these vaccines should be educated and take precautions, but they are not and most people who care about it don't even know.

After Isaac was born and diagnosed, the doctor said the same thing. Isaac is at risk and until we know his immune function, vaccine shed is a concern. 3 weeks is a long time to quarantine the girls from their brother. Add to that, there is no a active outbreak of any of the three viruses in MMR. We have an exemption waiver for the time being.

In the meantime I studied. I studied what the viruses can do. I studied Isaac's immunology results. We had titers done on what vaccines he did get (the not live ones are generally recognized as ok for 22q kids, even though each time he got really, really sick and cried for days). He did in fact develop immunity to the few vaccines he got. That's good! We do plan on getting the MMR for him, just not while he is non verbal and not while he is so little.

Things like RSV don't have a vaccine. Croupe. Random viruses. Vaccines resistant mutations like the round of pertussis that hit southern Iowa. What to do about that? How do we prepare for that?

We cannot live in a bubble. We cannot bathe in hand sanitiser.  This is a fine balance we manage between medical needs and holistic natural parenting. Once slip and we all get whacked in the face hard and bloody.

Here is what we do as a general precaution.

*This is not medical advice. We do these things under close supervision and advice of several specialists. I am sharing this information because many families are searching out ways to buffer and strengthen their kids immune systems and this is what works for our family.

Breastmilk. Isaac is 2.5 right now and still nurses. Even if he had been unable to suckle or if I had problems with supply, knowing what I know now about the vital importance of breastmilk on immune function and development, I would be pumping or getting donor milk. Isaac is beginning to self wean. I will continue to pump and make sure he gets breastmilk through one more cold and flu season, at least one more. If there is one single thing I could tell 22q families and doctors, it is to make breastmilk more of a priority. Formula just doesn't do it for the immune system. Formula is not your only option. I had a friend who's birth didn't go as planned and her baby ended up in NICU. I posted a request for donor milk for her on a local facebook group, within 20 minutes she had offers that totalled up 3 gallons of frozen milk, and one family delivered their share to the hospital within 2 hours of the initial request. There are donors lining up here to help every time there is a request. 

Elderberry. There is science behind this. Even our PCP agreed that it is a good item to use. We make our own, but there are several places you can get it commercially. The chemical reaction that happens to the virus makes the virus unable to stab into healthy cells and allows your immune system to catch up and win. There is also some secondary thing that happens that boosts immune response. Good stuff. Works for viral and bacterial infections. We take it if we've been exposed, if the kids wake up sniffly, or if we experience that tickle in the back of the throat or the chill that precedes getting really sick, hard to describe, but most people know what I am referring to. This is the first year that Holly nor Isaac have not ended up in the ER with croup or respiratory issues. They also did not get any vax this winter, but that may be coincidence.

Ground Ivy Tincture. High in vitamin C and plant based iron, drains ear fluid very effectively. Actually, it thins all mucus in my experience and drains lymph swelling too. That's what it does on me, at least. Isaac was cured of having any ear fluid build up at all in two weeks of usage. It is safe for just about everyone, except for people with certain liver issues, but be sure to research this for your self. More 22q families should try this. Every time I see pictures posted or posts about the suffering of the babies from ear fluid and infections and deafness caused by this, I suggest it. Usually I get laughed at for being a hippie, but this really works. I wish more people would try it. It is an oral dropper dose, and Isaac points to the cabinet and signs for it when he gets fluid pressure. I use it on myself when I get sinus pressure. Within the hour I am draining and healing.

White Willow. I use this for fever reduction and headaches, on myself. I have blood pressure issues left over from pregnancy and this is the only thing that works for that type of headache. Generally I let the kids fever out what they get. I watch though and treat with motrin if it goes over 102.5.

Marshmallow root, A wonderful cough drop. Very soothing.

Honey, proven to reduce inflammation and soothe sore throats. Doesn't have to be local but if you know your beekeeper you are more likely to get real honey. I suspect that is the base of the mythology that only local raw honey works, any real raw honey will do the trick actually. Store honey is more likely to be diluted or simply not even real honey at all. Honey has antibacterial and anti fungal properties, and so many trace minerals too. It is really good for you. Honey is used to treat infections in wounds, to soothe coughs and sore throats, and it tastes really good too. Several labs have said that it eliminates staph, e-coli, and salmonella bacterias.

Fruit, lots of high vitamin C fruit. My kids have open access to fruit. What is in season and local is best. We don't have local citrus though, so they get open access to clementines and oranges and pure lemon juice to add to water all through the winter months. If they eat a 5 lb bag in a day, I know they won't be constipated! Plus then I get all the peels to boil and moisturise the house air.

Teas, we drink a variety of herbal teas, most really high in vitamin C. I sweeten with honey or real maple syrup. There are a lot of good minerals in natural sweeteners, all help with over all health.

Whole foods, butter, coconut oils. I add coconut oil to hot chocolate and oatmeal and popcorn. Yum.

Sunshine. Natural vitamin D is to be had all year round. They get playtime outside in mostly all weather, every single day. Obviously not in a blizzard. Yay for Iowa having extreme climate zones. In the winter or rainy season they get extra mushrooms in our meals (sometimes hidden as a puree). They will sometimes also get fermented cod liver oil. Mostly though, they get sunshine. There are full spectrum lights you can buy, Happy Lights. We don't use sunscreen or lotions ever, and no one has burned yet.

What we don't do and pay more attention to when illness is about:
dairy, processed sugar, hot dogs (any processed meat product).

Secondary things, even if you don't buy into the hippie dippie nutritional approach.....doctors appointments. We ONLY schedule for first seen of the day. The office should be cleaned (hopefully) and the nurses and doc won't have seen/handled a parade of sick folks yet. I was concerned that the vax related sickness might also/instead be that they were in a doctor's office full of sickies coughing and hacking all over everything and everyone. So we go first. Always. I insist.

When we get home, we change clothes and bathe. Shampoo hair. Drink lots of orange juice. Rest.

Labs we have done early in the day and they know we want an unused room when we come in. We only use one lab for blood chemistry work and always the same incredibly good phlebotomist.

Other things: household chemicals. Harsh chemicals can damage the endocrine and immune system too. Since we need to minimise allergic and respiratory reactions, we use harsh cleaners and cosmetic products sparingly.

• we do not use fabric softener, we use vinegar instead
• cleaners: we use bleach sparingly, very sparingly. We use baking soda, vinegar, vodka, and essential oils to make surface cleaners. Very little carpet in our house, that helps a lot.
• we use norwex rags and kitchen sponges, not the whole norwex line, but I like the items I have
• real soap, made from whole ingredients and locally. Including shampoos. 
• we do not use artificial scent things, of any kind. No plug ins, no scentcy, no fake candle smells. None. I do simmer cinnamon and apples or orange peels and that smells nice.  

Sometimes managing the health of my family is like crawling through a tunnel, we have this definite boundary we are working within, a set of known health factors. We can usually see the light at the end, but it seems so far away. I feel like a lot of people just don't get it. We have even been publicly attacked online for our vaccine choices even with those choices being guided by and under close supervision of specialist doctors, some folks just think they know better than the experts who actually have access to my children's medical files. Weird, I know. I am sharing that experience specifically so that if anyone might feel inclined to give us another round of uneducated crap about what small part we have shared here, we've already been there and done that.  It is annoying and not helpful. Just know that we are doing our best and our best is allowing our children to thrive.

Vaccines are not a fortress that protects all. Immunity is more than that. We try and look at the whole health picture and work hard to build up the defences, the offences, the players, the coaches, and the playing field. Every detail matters. Every sniffle, every bit of ear goo, every cut. It is my job as caregiver to be hyper aware and balance all of this without letting the kids get paranoid or afraid of being in the world.  22q11 children can get very sick, from vaccines, from common colds, and from bacterial infections that a normal immune system would just shrug off and keep playing the game. Only this isn't a school yard game of kickball, it is my child's life at risk.

Again, I will state that this is not medical advice. It is not a judgement on other families' choices either. It is what we have researched and what we have done, this is what is working for us. Things may change, we may have to change with them. For now, this is what we do. 

*I guess I have to clarify again, this is just what we do and under close supervision of our specialists. Not medical advice. Not. Medical. Advice. The items we use are safe for our children and us, but every medical situation is different so make informed decisions, please.