Fun House Mirrors, a Reflection on Being Physically Different

Subtitle: Why discussions about growth hormone therapy for my son get me riled up and angry. 

I am short, not shorter than normal, not short for a girl. I am a dwarf, by medical definition.

When the girls in the locker room called me a troll doll, this is part of the reason why.

I have always been different. Not just different in my personality, because that is certainly true, but physically different than others around me.

Different in a way that it makes people uncomfortable. I once had a boyfriend when I was a teenager break up with me because he said he could not get over the fact that I had the body of a child. Seriously, I am that short. I weighed 85 lbs at the time. He was right about looking like a child.

I used to hate it. I used to look in the mirror and pray to grow. I had family members mock me and say that if I ever hit 5 ft they would buy me a car. Another suggested it was my thyroid and took me for testing, searching for a medical reason for my difference.  I would cry myself to sleep at night, praying to grow just enough to be normal. Enough to stop getting shoved in lockers and locked in. Enough that people might think I looked pretty instead of like a freak.

                        I hated myself. Oh how destructive self loathing could be, still is at times.

Then one chilly night, something terrible happened and being short saved my life. Looking like a child was my advantage and my gift.

After that I saw it as a small blessing. I accepted it. I embraced it. Tyrion (the imp) in Game of Thrones tells John Snow, “Never forget what you are, for surely the world will not. Make it your strength. Then it can never be your weakness. Armor yourself in it, and it will never be used to hurt you.” 

So I did. I owned it. I armoured myself in it.

Last week I stood in the fun house with my kiddos and looked in the mirrors. I was struck stone cold by the one that distorted my image into a tall, slender woman. A stranger stared back at me. It was as if I was looking into a parallel world that my wish was granted. That woman was not any happier, not any better. Just more normal looking. A woman without difference that might have defined her, might have given her an edge, a compassion for others with physical struggles.

That is not me. I am not a woman without. I am a woman with definition, embracing difference, living, loving, laughing, unafraid. Why would I ever again pray for that to be taken from me?

Being small, being different has given me a perspective on the world that being normal never would have. Being small is not a death sentence, it is not a tragedy.

Why am I writing about this? Why am I labelling it 22q11 deletion, when I do not have the syndrome (my son does)?

When we first started going to specialists for my baby, much of the talk about about his low levels, still normal range, but low, of growth hormone. The suggestion was growth hormone therapy which is a daily shot until he would be out of puberty or reached a desired height. The concern was that his predicted height was in the 5'3" range.

Let me just remind everyone that I am just 4'9". His predicted height is 6 inches taller than me. Predicted.

There are side effects of growth hormone therapy, risk to the heart specifically. Risks to the liver. Risks to the thyroid system. Risk to all sorts of physical systems.

You know what risks being short has? None, unless you count being bullied by assholes as a medical condition and it seems that a lot of the medical community actually sees this as a legitimate concern.

If the problem is really that assholes are that much of a threat that I would have to make my non consenting child endure daily needle injections and risk serious side effects to his health then I propose an anti asshole shot instead. I am serious. The kid who teases and tortures another child over a physical difference is the problem folks, that child is the broken one. Let's collectively turn our attention to fixing that real problem instead of jacking up my kid with synthetic hormone shots and let's also be real for a moment and realize that not being short is not a free pass out of being bullied because that isn't the root of the problem anyway.

It is different for boys though. Like hell it is. Yes, I am angry about this. My father isn't much taller than me (yes, it runs in my family) and he is a Life Flight AirEvac Pilot. My brother, also short in stature is a National Guard veteran who did a tour in Afghanistan. My grandfather on one side was an oil rigger, on the other a carpenter. The men in my family never let being short hold them back, instead they used it to their advantage. Coal miners, oil riggers, shrimp boat captains, farmers, pilots, firemen, poet, lumber jack, soldiers, sailors.....men every single one of them short.

Why should I take that heritage from my son? If he is only 3 ft tall then he will still rock this world. There are opportunities available for people who are short that are not open to tall folks. Movie roles, jockeys, divers, gymnasts, to name a few. If that is who he is, or what he grows into, he will do so without unnecessary cosmetic medical intervention until he is of the age to consent for it.

Obviously I would change my mind if there was a medical concern, if he needed to grow for a life saving surgery or if low growth hormone level started to short circuit his other systems. That is not the case right now though. Right now, every single time a medical professional starts waxing poetic about the horrors of growing up and being a short stature adult I am simply smashed down, burned to my core insulted.

Napoleon, folks, was also in the short club. Seriously, he almost took over the world. When they imprisoned him, he escaped. He was 5'2" by some historical accounts, 5'6" by other later accounting.

Short is not a death sentence. Short is not a medical condition. Short is not a disability. It is not the end of the world that I can't reach the ice cream on the top shelf at the grocery store. It is not a crisis that I have to sit on a pillow to see over the steering wheel to drive. It is not the end of the world to find pants that fit correctly. I can also play basketball better than most people. I have a fantastic long shot. I can swim well, run fast (if I wanted to, I hate running), and I can fight hard.

Short rocks. This little person is about to go to war the next time some tall willowy nurse starts in on what a tragedy it will be if Isaac is just over 5' tall. No, the real tragedy is how afraid of difference the world is that people are willing to risk the health of their already fragile children, afraid that they might be....short. Afraid assholes might not like them, that's what it gets down to.

The end of the story is that as I walked out of the fun house, I passed the mirror that was normal and real. I am be different, I may be a midget, but I am fantastically awesome and beautiful, my arms full of joy and life. My children hugging me, my friends cheering us on, my own smile is real. I go to sleep dreaming up recipes for pork roast and bacon and cheesecake instead of crying over mirror illusions and what asshole strangers think of how I look.

These are my fighting words, my gloves to go in the ring. I will raise my son up to love himself and see his own potential. I will not instill daily, not just an injection of synthetic hormones, but each shot would be a reminder of the rejection that would be his birthright and fear of being different. No. I will not do that to my child.

You betcha this is what that willowy nurse is going to hear next time she tries that line of logic on me.

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. 

Marriage/Family/Partnership

Taking a break from telling our medical story to focus a bit on something that is just as much a part of this journey as all the labs and tests. This was later in the planned series, but it has come up 3 times in the last 24 hours in the support groups, so I decided  to publish early.

Marriage. One of the things I have learned a lot about about second hand is how the stress of medical needs can break a marriage and a family into jagged little bits.

There was a sci-fi story I once read where the mom's wish was to make her special needs child less hideous, the wish granter gave her a task, she had to disappear for a month, no contact. When she came out of this hermitage, she changed her wish. Her wish was for her own heart to change, for her to love her child just the way she was.

Though this was sci-fi, and there were other plot points going on, this particular story element stuck out. Another short story I read was called Only a Mother, about radiation mutations and the mother was writing about her baby as though nothing was wrong, though the baby was in critical needs state, born missing major systems.

Two totally opposite ends of the spectrum. One mother in collapse from not being able to love her child with needs, the resentment overtaking everything, and the other in total denial.

Both stories were mothers essentially operating in a bubble with no support, at least that was shown.

It reminds me of something I read recently, "Under pressure, when we get squeezed, what is already inside comes out." This. This is what I am saying about special needs parenting. You don't get transformed into a super hero, what is already there comes out. The same goes for a marriage.

Support is absolutely critical. At least it is for me. Chad and I married young. Really young even for our peers. We just knew. When you have something so wonderful and fun and full of love, you don't wait. We did wait to have children though, nearly 7 years. A lot of that was due to infertility, but when we became parents it was so sweet and perfect and at just the right time. Each time love surprised us again with a new blessing, it just made our love grow.We've been married 15 years almost, together since 1996. That's a long time, half my life almost!

I'm not saying we don't fight. We do. We yell and get mad and slam doors and get cranky just like everyone else, I get mad when he steals my dish soap, he gets mad when I leave wet towels on his side of the bed, but we recover.

How does this relate to our special needs journey?

At first I was really overwhelmed with going to all the specialists alone with Isaac, or with girls in tow. It was so stressful and my sweet girls, when they get stressed they amp up the vibrant, colourful, cheeriness that is their play. Like tornadoes of girl. Not exactly a good thing tagging along to doctors appointments.

I struggled with this alone. I fumed. I resented. I worried that I was taking everything the wrong way. I was angry all the time on the inside. It took nearly everything I had in me, leaving nothing, to just seem cheery to the medical professionals (because crankiness gets written in your file and you can get a reputation for being one of "those" mums....) all while standing by our lifestyle and beliefs, seeming optimistic to family members, loving to my girls, and at the very least present for my friends. I being drained like a glass pitcher with the bottom shattered out. I would cry in my car. I felt so alone.The unknown looming like a storm front, the warning sirens going off, everyone running for shelter, winds picking up, but still no rain. Not yet. When will it pour down? Will it drown us, tear our house down in a splintering explosion, steal our sweet baby forever?

Why was I doing it all alone? 

One day Chad came into the kitchen and I was crying at the sink. He hugged me. I doubt he even remembers it. But I do. He just hugged me and being in his arms was safe and perfect, just like it had always been. Nothing had changed. We talked.

So I asked for help. I was so worried about asking for help. I don't trust anyone with my kids, not even 80% of my own family. Basically I had to ask Chad to take off work and ask Grampa to sometimes take the girls.

Chad made it clear that taking off work was not something that could happen.

There were some I NEEDED him there for. Like Isaac's CAT scan, or the meeting with the ENT that we would discuss surgery.

And the trips to Minnesota needed coordination.

We worked all of that out. Sometimes he also has to be the one to take the phone calls or do the talking. When I need to I hand it over to him. Not because I can't handle it, but because I need him to. And he does.

The biggest thing Chad has done through this entire journey is listen to me, just listen to me spout my fears and my worries and my hopes when they overwhelm me. He takes me seriously. This is very important. He remembers to tell me that he loves me. He's there. Simple things that really make a difference.

Except....that was a lie. He was cheating on me and slowly draining our retirement and savings. 

But what about our relationship? That part is not anyone's business. Yet, it constantly gets asked. In italics so we know they don't mean how we are friends. I blush every time. Still, you know what. My business. Our business. Not random strangers'. Not our family's. Not our good intentioned friends.

A marriage is more that that, always. If one part fails all others crumble. Chad has done a shitty job making me feel loved and valuable and when he is a crappy neglectful father, when he's gently holding a sleeping baby, or marching through pasture with a girl on his shoulders, or quietly demonstrating to a bunch of excited kids how to hook a worm, or handle a wild caught snake/turtle/giant frog? Yeah, only when other people were watching it. It was all an act.

If everything else is working, the rest will come. Chad still harasses and tries to control me, and I still try and do the things I did before we were married.

Facebook has actually helped us with being closer, even though he works all day with a long commute. He LOVES that I post every detail about our days, pictures, funny thing that get said or done. He comments and shares and posts too. We are both very involved in groups we love. Doing things together virtually does help. We both have open public pages, all posts are public. We have nothing to hide from each other or others.

He was holding my time accountable and at the end of the day accused me of being lazy. 

 I have rules I try to follow, given our relationship and family is so public. You can't possibly have a good strong relationship with someone if they are constantly posting that they are lazy or drunk or worthless or making unpleasant comments about their weight. For some reason it is pretty common for women to do this to their husbands, though I am pretty sure it is a double standard and if their husbands did this to them friends and family would be paying for the lawyers. So my rule is simple, I try really hard not to share conflict of any sort online. I have missed a step in the past year and was pretty public in two whole posts about my little sister hurting my feelings. Making that public was a huge mistake and was game changing for the relationship. I am really glad I have never done that to Chad. There are private, closed places to ask for help, facebook is not the forum for that. Our journey is about relationship, to each other and to God. Calling out our spouse's flaws does not make either stronger. So our second rule is that if either of us posts something that upsets the other, either it gets taken down or an apology is posted and it is the person who is upset's choice which one happens (sometimes taking it down makes it worse).

This next part? It was all lies. 

And we are still deeply in love. I have said before, being a special needs parent changes you, but really what it does is intensify what was already inside of you. For us, it has made our relationship more intense, more loving, more creative, wonderful, and fun. Our everyday lives reflect that joy.

We would have a harder time of it without the family support we have, but I know we'd still make it no matter what.

In 2015 Chad left the kids and I homeless and penniless while he moved in with his girlfriend who was a Burlesque dancer, 28 years old, and unemployed. He took all out money and bought her a house, didn't pay child support until the courts ordered him to, and bought her a 3000 square foot Victorian Mansion while I paid the entire court and lawyer cost. The kids are in therapy, public school, and I have primary custody. He's very happy. 

A brief interlude, grief and support and random thoughts

What I am writing as our 22q story is only our own experience.

The reality is that some 22q11 deletion children die. They catch something that their immune systems cannot handle. Their fragile hearts give out. A mistake is made at a hospital and a crucial medication is overlooked.

We are blessed that none of these things are reality for us right now. That is not part of our story. I don't know what it is like to sit next to a breathing machine. I don't know what it is like to hear a crash cart called for my baby. I simply don't know.

This last year a 22q child that was very much a part of our community died because of complications, hospital error, and lack of communication between specialists. The heartbreak has been felt like a tidal wave through our community. That family lives one of my worst fears.

It is not that I don't trust doctors, I just know that when things get as complicated as they can be, things can easily go wrong. I know that the most medically invasive options is not always the best. I will not get sucked into trusting someone just because of letters that follow their name, they have to earn that trust. They HAVE to work for that trust.

When Isaac was first diagnosed my first impulse was to call the three mums I knew that had special needs children. S., H., and L. were so amazingly supportive. H. and I had long phone calls and visits where I cried. S. gave me tips about doctors. L. invited me to the Down's Syndrome group.

Wait. What?

So many times in the 22q community families are referred to the Downs Syndrome support networks. So many times it becomes a hot button. My kid does not have THAT. The reality is that children with physical markers of their genetic promise are discriminated against, publicly singled out, and mocked. We don't want that for our children. We put distance between that and our family. The reality is also that folks with typical children are putting that same distance between our children and theirs for the exact same reason. 

Downs Syndrome and 22q11 deletion syndrome have LOADS in common. Hypotonia, heart issues, immune dysfunction, motor skill delay, speech issues, OT, PT, ST, IEP's, specialists, therapies, othering, discrimination, family tension, hearing issues....this list of things in common are more extensive than we realize. Chromosomal anomalies have issues in common globally. The reality is that it makes sense to connect our families and our children and support each other.

Once the initial shock wears off, consider it. I am grateful that I did so quickly because these families are still a HUGE part of our support network. It is good to have real life people that you can cry with and to, outside your own family.

Clinicals and Answers, Sort Of, Part 3

After our inhumane treatment at the JerkFace's office, I was at my wits end. I don't get to that place often. I am generally a joyful, hopeful mama. But this was ridiculous.

We went to do labs that he requested. I still wanted my answers. The lab technichian actually injured Isaac's arm! She never even got a good draw, yet she blew out one arm, he was in tears, bleeding, and bruising. We left without the draw for labs. Because, F them. I went directly to our pediatrician's office, showed them the injury and his phlebotamist assessed the injury. Isaac could not even bend his arm for two weeks. She took the draw from his other arm, it took three sessions spaced over 2 weeks. Why? Because the requested labs required that much blood and Isaac's weight indicated that they be spaced out. !!!! The big hospital lab never even mentioned that! Or asked about his weight! I was pissed and grateful at the same time.  Grateful for this tech. She called me later that night personally to check on Isaac and ask about his condition so she could research it on her own and make changes to how we do draws.

We always see her now. She always gets the draw. He barely even cries. Also, about 1/8th the cost of the big lab. Same labs.

In the two weeks that it took to get them all done, JerkFace's office called me three times to let me know how concerned they were that we left their lab and that we really needed to get them done.  I explained each time what had actually happened and that we were getting them done. Each call made me angrier and angrier, but I stayed sweet. Why? Because being a bitch gets you crappy customer service especially from health professionals and my kid's health was on the line.

The nurse called from JerkFaces office a 4th time. The labs said to vaccinate him ASAP. Huh, I said, what exactly did you test for? What were the results? Could you send them to me? She told me no.

She told me no.

She would not explain, only that the doctor's decision was that we needed to get Isaac up to date on all his vaccinations as soon as possible. I asked if we should do one at a time or skip the live ones. She said there was no need to do that. Just get them. I asked her to send me the labs. She then told me our pediatrician could request them.

That's not how we do things. We get copies of everything. We see too many specialists to wait on fax machined requests. We don't make medical decisions of any kind without the data and gosh darn it I paid for those labs, Isaac was injured in their lab, and they had better tell me what labs were done.

After my experience in Iowa City I wasn't going back there, gee, I can Google 22q and read off the main website too folks. JerkFace said we wouldn't be allowed to see anyone in HIS practice (lie, we still see the endocrinologist).  The two big 22q centers were thousands of miles away or may as well have been.

Then my online 22q mama friend K. suggested the 22q clinic in Minnesota.

What a blessing. They scheduled us in 3 weeks. They only do clinics once a month. After fretting about the drive and the time involved and who would watch the kids, my father in law offered to drive us up, pay for a hotel, and take the kids swimming all day while Isaac and I were at the clinic. Huge blessing. Huge relief.

We checked in at 7am into a suite and spent the day there. In one room. We saw, speech, nutrition, immunology, child development, ENT, cardiology,  audiology, we had labs done, we had hearing tests, a cardio echo was finally done (still fine), our case manager nurse checked in with each new specialist and made sure we got lunch. At the end of the day (3pm) we ALL met in a conference room and discussed what each found. I also found out that Dr. JerkFace isn't even an immunologist. He does something else specialized and with pediatrics but not immunology and he was wrong about shedding and wrong about what the right way to go about vaccinations is and he ordered a bunch of tests that really didn't tell us much about Isaac's actual immune function. The real immunologist at MN, ordered those tests and had the results before we left.

Conclusion, Isaac is 60% deaf, maybe 100% and needs an BAER test to confirm in what way. Will need aids or surgery.
Heart is fine.
Palate is fine. All systems present.
Kidneys are both there and functioning.
All glands present.
Hypotonia is the dx reason for motor delay. Makes sense.
Low iron a priority. Referred to nutritionist.
Low D an issue, but willing to treat with nutritional plan. 
Titers run for vax he has had, show fantastic immune response. Learned they could titer. Will use that.
Vaccinations should still be done with caution and wait on the live ones until he is physically stronger. 22q kids have different immune systems and sometimes they look like they work then don't.
Everything else fine.

I was praised for breastfeeding. They made sure everyone knew I was a breastfeeding advocate, would not back down, and that I intended to breastfeed into toddlerhood and practice baby led weaning. I was praised for baby wearing, by the physical therapist, and they all said Isaac looked healthy and was sweet. 

The day was fantastic.

Except it wasn't' supposed to be. I was supposed to be devastated that he was dx'd as deaf. I wasn't. Should I be? I asked again if he should be retested. If the dx was a mistake. His deafness was the same as Chad's. He has so very few symptoms. Could this test have been mishandled like prior tests done at that same lab while I was pregnant? They offered to retest....but if it came back negative, Isaac would still be deaf, but our insurance would not cover hearing aids or the surgery! Insurance would only cover it if it was a genetic "defect". How messed up is that.

To be continued.......

Into the Fire and Out Again, Part 2

I gave Isaac the middle name Waldren when he was born to honour my uncle who was also seen by many to be disabled. He didn't see himself that way. He was a husband, a pilot, a fire chief, a business owner, an early computer programmer just for fun, a car mechanic, and a great mentor and inspiration to anyone who met him. He was mostly deaf and paraplegic (paralyzed from the waist down). I say that last, because it was the least important thing about him. A lot of people forgot that about him after a first meeting. Seriously. He flew planes. Raced cars. Fought fires. He was a Civil War history expert with an artifact collection that the Smithsonian was interested in (according to family gossip). That's what people remembered about him. I hope that is also Isaac's legacy.

When Isaac was dx'd as mostly deaf, I was not freaked out. Living with a deaf person is easy enough. I grew up with it, Chad is mostly deaf in one ear, and it just isn't a big deal.  That resolved itself without surgery and I was grateful, mostly to avoid having Isaac go through a surgery.

His ear fluid resolving also meant we were down another specialist. At this point we are down to just one. That may change.

How did we get to that point? Rewind back to 2011.


It was May when we received the dx over the phone. MONTHS later we got scheduled for genetics. In the mean time I scheduled cardiology. How did I know to do that? Yeah. Online support groups.

We kept seeing GI, but we were dismissed with a clean bill of health because the new to us 22q growth chart said he was in range and not actually failure to thrive. At that point, I was pissed about that. They dx'd him as FTT and NEVER TOLD ME.  The GI is actually who had initially referred Isaac to neurology because of the closing early soft spot. They pushed formula on us. I had JUST finally gotten Isaac off of the nipple shields and on to a successful latch. I argued and held my ground. I would NOT give up a successful breastfeeding relationship. A couple visits in, lactation consultants later, I agreed to one week of fortifying pumped breastmilk. In that week? Isaac LOST weight for the first time and was super sick, vomit, loose stools, spit up, constant crying. On day 5 I tossed the formula can and went back to doing what we'd been doing.  I started monitoring fat content of my breastmilk and changing my diet to make it richer. This CAN be done and it does matter.

Cardiology. They didn't do an echo, but cleared him of any heart issues. All while saying, this is really strange. We are usually the ones to dx 22q, we've never seen a 22q child without major heart issues.

We've never seen a 22q child like Isaac has become a recurring theme.

We finally made it to genetics. Good grief. They knew less about 22q than I did at that point. I kid you not. They commented on his deafness and like the pediatrician referred us to government services. I said refer us to an ENT if you think there is medical reason to address a failed newborn screen. They didn't. So we didn't.

They did send us to an immunologist, or a jerk pretending to be one, and an endocrinologist.

The endocrinologist was fantastic. She ran all the blood tests and carefully explained each one. SHE explained the labs the other docs had ordered and their results. She was willing to work with us to address Isaac's needs nutritionally. AND she confirmed what I had known- breastmilk saved my sweet baby from a whole lot of other snowballing interventions. If I had kept going, or had no other choice but formula, he likely would have ended up with a G-tube, aspiration issues, and immune dysfunction.


Breastmilk sure is amazing.

Why isn't breastfeeding and/or donor milk standard practice for 22q babies then? WHY?

Because in the night when your baby is dying and your milk is drying up from stress, that's the last thing on your mind. It isn't up to the mums to be educated on this, it should be the doctors and nurses and specialists and NCIU staff making it the easy choice. Donor milk should be right there. If you are a nursing mum and know someone struggling with milk supply, especially if they have a special needs baby, don't hesitate to offer your breastmilk (unless you are a drunk, a druggie, or have a communicable disease.....then don't.....).

Ok, back to the story.....the immunologist. I insisted on seeing him. I wanted more data that I could not find online about what to look for and what I need to know to make decisions regarding Isaac's vaccines. Our ped would not clear our girls for their MMR without Isaac being cleared because of live vax shed. Have you ever heard of that? I had not. This "expert" said it was stupid and we needed to give all the shots right there and then to get him up to date and the girls too. Flu shots included.

No. First. We don't do flu shots. Second, offering shots to kids you don't have records on? Yeah. No.

He said we could not be seen as patients in his practice without flu shots because we'd be putting other children in danger. In response to my earlier question about the girls being tested for 22q because they had more symptoms than Isaac does? He said Isaac clearly has the deformities of the face of 22q and the girls do not.

We left.

Later he wrote in Isaac's file what a pleasure it was to work with such a well informed and caring mother. He is now known in our house as the JerkFace Immunologist.

To be continued.......

Defining Moments

Look closely at any invention and you'll find some form of community behind it. Invention happens when we're interactive, self-expressive, alert, and willing to enter into change.- John H. Lienhard

When I was 33, I became a mother of a special needs child. The moment he was born I fiercely loved him. He was my third, the only boy with two sisters, a house full of noisy joy to welcome him. He was quiet and sleepy and sweet. Isaac has 22q11 deletion syndrome. He does not have some of the major problems associated with 22q, like heart and palate defects, but he is little and has hypotonic muscles. He looks and acts physically about half his age. Cognitively he's just fine, as far as we can tell from his use of sign language and communication at 21 months.

Months before he was born, as if God was preparing us for this path, our community began to form. I was suffering through a rotten social situation/ power struggle and while I was floundering, several women stepped up and caught me. My oldest daughter was not dealing well with the stress of my pregnancy, our move across the state, and our financial situation. She was lashing out in public and it wasn't pretty. I know now that it was normal, a normal healthy reaction to a stressful time. Like a hug and a warm cup of coffee, these friends surrounded us and loved us for who we are. It all started with an email to someone I had met and talked to a few times, but I knew she had more knowledge than I had dealing with specific behavior challenges in children. I reached out and every day I count that blessing. Instead of being angry at the world alone, I moved forward and took to my books, asked questions, and most of all stayed true to who I wanted to be as a mother.

I never had a chance to feel alone. When I got Isaac's diagnosis, they were already there, with willing shoulders for me to cry on, to talk to, and to vent my rage at the difficulties of medical beaurocracy. We are also followers of natural health and parenting, but that community just doesn't get what it is like to walk on the edge of medically fragile and natural health. The special needs community can have something like Stolkholm Syndrome when it comes to their medical providers, those folks can do no wrong ever.. We occupied a middle ground, one that was pretty empty and foggy. Then one day I got an email from a lady I had never met in real life.

"Let's start a group," she said. That is how Natural Parenting for Children With Special Needs was born. She gathered up everyone in limbo like us and the group flourished and grew. We connected, shared stories. It is more than that though, through this group, I have healed.

I cannot emphasize how important that community is to a family with a special needs child. Even so, we felt people distancing themselves from us. Awkward silences when we shared our news about his progress, or our difficulties with managing his care, became the normal in social situations. People would guess his age and be off by a year or so and not know how to respond.

Now I know how to respond when someone give him a withering or confused or disgusted look. I wrap him up in love, I show him how fiercely I love him. I beam with pride so the looks of strangers can not darken him with shame.

I am a better mother to my girls because of it too.

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.

Little Miracles

Update on baby Zap and 22q11 Deletion Syndrome:

We had a couple more things to do this year, things to check on and worry about. It took 6 months to get an appointment with the eye doctor specialist. The appointment itself involved  lot of waiting, no easily accessible bathrooms, Blueberry Girl having issues with there not being a bathroom in the office, and then more waiting.

His eyes are fine.

He's one cool dude riding home.

Then we have been going back and forth since March about his ABR results. The audiologist at the test said he's not deaf and when he gets over his cold the slight loss from fluid in his one ear will go away.

The ENT disagreed and wanted tubes put in ASAP.  Isaac had never (on record) passed a hearing exam in his left ear. Long term fluid can cause permanent damage that is not reversible or helped with hearing aids. He'll have speech issues. Cognative delay. Etc. Etc. Scare, worry, fret.

I held my ground. He's not deaf. He responds to music, talking, whispers.  I know my kid.

The countered, he may have hearing in one ear and he can hear like he's underwater. COGNITIVE DELAY they emphasized.

To which I responded: Helen Keller, only not out loud to the doctors.



I pushed. A friend told me about NUCCA therapy and how her deaf child with hearing aids no longer needs hearing aids. I know her daughter. She is a delight and wonder and hilarious. I know this mother and she is not easily fooled or taken in my unneeded medical work.

I pleaded with the docs, let us do 8 weeks of NUCCA then we'll talk. They said check in at week 4 and also chiropractic care is a fleecing scam, malarchy. It is waste of money. It doesn't work.

I cried when I got home that night. I was really really scared about him going under and having surgery. He's never had an ear infection, not ever. He's rarely sick. Never had anything that would cause him a lot of major pain, other than that vein blow out at a blood draw. I cried. I stressed out. I cleaned things and didn't sleep well.

At week 4 the ENT said the fluid is worse. It is in both ears now. Still think chiropractic care is a real thing? I was devastated. We skipped that weeks NUCCA appointment. The ENT said next visit we'll talk about when to schedule the surgery. The only thing that will help Zap's hearing.

Still I was now in the habit of lymphatic massage when Zap nurses. A friend suggested a tincture of ground ivy and another swore by it for ear fluid drainage. She gave me a bottle.

3 weeks to go. We went back to NUCCA. The chiro said he's holding adjustments. Doing great.

2 weeks. Isaac started asking for the tincture drops after breakfast.

1 week. I was getting super nervous.

And day of the appointment I brushed my hair, put on fancier than farm chores shoes. Gave Zap a bath. Met Chad on lunch break and headed over to the ENT.

Remember, to talk surgery. I had in my head to put it off as long as possible to get him bigger, stronger, and come to terms with it. I had in my head to ask it to be done here in our town, I asked the local hospital and they said they could do it if the ENT was willing to come there.  I had in my head to submit to medical fate and just pray that Zap not be harmed or in too much pain.

But his ears were fluid free.

And he passed the hearing test in both ears. Perfectly.

We asked if we needed to come back and check again in a few weeks.

The ENT, was gracious. We did not flaunt the "malarchy" working, We did not do happy dances in his office. We asked questions about long term care. We asked what he thought about the 22q diagnosis. He did say Zap has the 22q look. That he did not doubt the diagnosis.

He said we're cleared for ENT visits. He'll send the report to the 22q team we see in MN. Cleared.

Cleared.

Zap is not deaf.

I don't know which of the hippi dippi "snake oil and rain dance" treatments worked. Maybe it was prayer alone. Maybe it was prayer that brought these friends into our lives that handed us healing tools. Maybe the docs were wrong all along. Maybe just waiting allowed things to work themselves out.

I am humbled by His grace. God is good all the time.

What I hope is that someone reading this needs this. Maybe, just maybe more kids can avoid surgery and have their hearing restored.

Oh yeah. he is also SUPER adorable cute. Seriously.

I wonder too if jumping to surgery is just our way of doing something now. Waiting is harder. Same thing with speech therapy, OT, PT for babies. We are so afraid of waiting that we jump into expensive interventions to feel like we are making our best efforts and at the very worst it can't hurt. I think it can hurt. Beyond pushing a kids ahead of their natural development, the national averages are skewed and my kid is considered way behind instead of just on the outside of normal. Of course I am not talking about severely disabled children, but kids who are just taking their own sweet time, like Zap. Putting the additional guilt, financial burden, time in therapies, stress on families isn't fair. There is lots of talk about how we are pushing children academically too too young and younger still every year. THIS starts as babies! Not walking or fully verbalizing at 18 months? Totally fine. I'm not kidding and I will not be scare tactic'd into dishing out money for surgeries and therapies just so he can keep up with an artificially inflated "norm".

Sit back. Play in the sun. Swing. Dance. Roll in the grass. Running can come later.

Mixed Emotions

It is true.

I stopped writing the blog. Honestly, I stopped hitting publish. My draft folder is full.

2011 was a horrible wonderful year. Mostly though I was stomped in the face by it. It has been hard to get up.

Last Spring Isaac was diagnosed with 22q11 deletion syndrome, also known as (Partial) DiGeorge Syndrome.

Go ahead. Look it up. I did. If I thought the lab test mishandling during the pregnancy was bad, the slam down of being told this and looking it up....I have no words. And that's why no blog.

Worry was my mantra. That's a hard word to breathe day in and day out. So we started the rounds of tests to find out how 22q has settled in his body. Renal ultrasounds- check- he has both kidneys. Echocardiogram- check- his heart is perfectly formed and functioning. Immunology doc was a total jerkwad and even though he SAYS all the results came back perfect, he wouldn't hand them over to me. That's a whole story of its own.

So we went to Minnesota to a Children's hospital where they know about 22q and they actually treat the patients and Mamas with respect, like a partner in patient care.

So far, the only thing we can find is that his motor skills are slightly delayed and he's slightly low on insulin growth hormone factor. Even that low is still in normal range. He's little. 5% range. But he's a funny little dude. And so happy! And I am only 4 ft 10 inches, so being little is genetically possible.

And he's deaf. How deaf we do not know, other than Moderate to severe hearing loss. We have a test next week to determine extent and fit for hearing aids.

I struggle with sharing his story here. I struggle with opening up my child's medical file for the world to see when he has no say in it. And if I start getting more readers? My life as a reality show via blogger?

But what if people started hearing our story? Started advocating for their own care? Saw how beautiful children with genetic anomolies are? Prayed for us, prayed with us? I don't think we even shared his diagnosis with our church. I have totally turned in. Many of my friends don't even know.

I'm just not settled yet. I don't want to get attention for his medical condition and struggles. That's not fair to him. I know because I grew up with seeing that played out and how that can feel. Not cool. But there are other families out there, moms who feel as alone as I do at times, struggling too.

Tonight in one of the online support groups I found, a particular thread caught me off guard. and I ended up sobbing again. I'm up until 3am most morning and up again at 7am. Working these days on 4 hours of sleep. I'm here, but not really here for any of my kids. Caught on the phone with specialists, researching medical articles, traveling......or even just thinking and reflecting about it. Then on the floor doing physical work with Isaac. Praying that he catches up. Praying that the doctors will leave us alone, that someone will say it was all a mistake, another lab mix up.

Then grading papers, farm chores, selling pork, paying bills, keeping house, laundry, dishes, cooking.....

And at the end of the day there is nothing left of me. So tired.

Just watching the baby sleep can send me into tears. He's so perfect. So sweet. So happy. But he has this 22q11 dna sequence that has parts missing and that means something. But what? How will it show up? Why can't we find it? Not knowing is so hard. So grateful that the big pieces are ok, heart and cleft and thymus, but something is missing and we don't know what.