Sunday, 30 June 2013

Sheep Shearing






In Iowa the summers are hot and sheep are covered in wool which makes them very uncomfortable. We shear them in June, later than I'd like, but our Springs are wet and muddy and that makes it difficult to get a good clean shear, and our shearer really prefers not to work in knee deep mud. I agree with him on that, very much.

He's really cool by the way. Throughout life we often, though not too often, encounter individuals who know something about everything and can share that in a not pompous way. This guy is one of those fantastic people. We look forward to lunch and chat with him after shearing too!

We have tried sending the wool off to process, but that was expensive. We have decided to just sell raw fleeces. When I did that with the fall lambs fleece, I sold out in a month, while I still have the processed roving from Spring of 2012 left in inventory. Granted, I do not really market or push our farm wool, I have no etsy shop, I often forget to bring it to market with me. That will improve as I get more practiced at market set up. I hope.

Anyway, here's more pictures of the process for anyone curious! 




Friday, 28 June 2013

Iced Coffee and Maple Syrup

Recipe, 1/2 gallon jar
Fill half the jar with coffee, cooled
Add 1/4 cup real maple syrup
Fill almost the rest of the jar with whole milk, leave room for ice.
Top with ice
Put lid on jar and shake

ENJOY!

An Anology

This semester I have been teaching at a local college, teaching history. I LOVE the class material. I get excited prepping lectures, finding extra resources, grading papers even.

Then I get to class and it all falls apart.

Tuesday I was so frustrated I couldn't speak for an hour, I had to hole up in my office and stew on it. Let's just say that the class crossed a line beyond bad to worse as far as student participation went and the written response from students slammed that baby home.

I prepped the lecture, created the slideshow of images last night, but without the usual excitement.

The question nagging....what am I doing wrong? I know this material. I love it. When I prep at the Pizza Hut on weekends two of the waitresses sit down with me to find out what subjects I am teaching and THEY get excited about my class material. Why am I not engaging the students?

In a last minute effort, I put out a request on FB for suggestions. Quizzes. More quizzes. Small groups......my immediate response in my head was that small groups were impossible with the set up of the classroom......

It was then that it hit me. I am falling prey to the architecture of the classroom. Let me explain.

In my own graduate thesis I discussed how architecture, how the buildings themselves not only reflected the social history of the time but also dictated it. The classroom for my class is a theatre lecture hall with me at the podium. I was trying to fill that space. Even though that is not how I best teach, not how I feel comfortable, and not how I usually communicate. It becomes a theatrical performance, easily derailed by an unresponsive audience. *(Why I quickly left the theatre track I was on as a teenager....)

I wasn't being true to myself and therefore not connecting the students to the material.

I got to the classroom today an hour early, as I usually do, but instead of unpacking notes, drawing a timeline on the chalkboard, and setting up the projector, I stood at the back of the class. How do the students see me? The podium itself blocks their view of me. If I step aside, I block the chalked up notes. The screen looks faded by the sunlight and they can't possibly even see the images I put up.

As they started to fill the seats I reorganized the class structure in my head. By the time I shut the door, I was ready.

And class was awesome.

I divided them into groups and gave them 20 minutes to prepare their group to speak on the suffrage movement in the Western US, assigning Utah, Wyoming, Colorado, and California. They were given prompt questions, and a task. I circulated and helped guide them towards specific things.

The presentations were lovely. Every single student participated.

I pulled a few aside after class and asked them what they thought of today's class. Overwhelming was the positive response, but also more timid feedback about how the lectures had been going from their perspective.

Change is good.  It takes 10,000 hours to get good at something. I am 85 hours in. I remind myself that every hour isn't going to be great, that I will fail before I get my footing, to just keep trying.

Thursday, 27 June 2013

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?

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 as often as the appointments were.

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.

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 great job making me feel loved and valuable and when he is a fantastic loving 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, nothing sexier than that. Nothing.

If everything else is working, the rest will come. Chad still courts me, and I still try and do the things I did when before we were married. Except now my cooking doesn't land him in the ER or get the fire department involved. I wish I was being funny.

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.

I will say though that 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 you 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).

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.

Wednesday, 26 June 2013

Red Chicken in a French Pot

Roasted Red Chicken in a Red Pot with Red Fire Peppers and Red Onions

That's what we call this recipe that I make in my red French Braiser oven. My husband got it for me for Valentine's Day/Birthday/ILoveYouAlwaysEveryDay.  We have a few, a very few poulet rouge chickens left in our freezer (translates Chicken Red Chicken). I love red onions best for cooking, had red potatoes and red bell peppers in the fridge, and nothing is complete without red cayenne and red/pink sea salt.  I also brine the chicken. I brine all poultry, always in sugar and salt water. Actually, this is how I thaw the frozen bird.

Put the chicken in and tuck quartered onions, potatoes, red bell pepper, and some butter all around. I also put in a few slices of citrus, this time it was clementine but lemon and blood orange work well too.  I put melted butter all over the bird and then sprinkled with salt and cayenne and white pepper. Sometimes I use our Swamp Fire mix, but your favourite seasoned salt will work. I have used the North African Berber seasoning from Pensey's and that is good too.

350 degrees until it is done. Usually 75 minutes, but this one was done in 45. Check. I start to check with the meat thermometer when it starts to smell good and brown on top. Always use a good meat thermometer. Always.

I cooked the chicken upside down. Not on purpose. I could not remember which way it was supposed to go.  We carve it up, leave the onions in the pot, put the bones back in, add carrots, celery, and vinegar. Fill pot with water and put back in the oven over night= 3-4 quarts of good bone broth.

The kids fight over the drum sticks and both girls eat all the meat off to the bone. Isaac gets a mini drum from the thigh. He eats it to bone too. The breast meat is tender and juicy and very deep in chicken flavour- that's the breed of chicken though, not the cooking method. Breed and feed matter, this hertiage bird is raised outside at our farm and fed goat milk whey. It takes a fabulous breed and makes it that much better. When we raise these to sell, we post on facebook and sell out 80 chickens in 20 minutes, with a waiting list. They are that good. They average 4-5 lbs each.

I had to hide my last 10 to keep them for our family. ;)

We do chicken at our house every 3 weeks or so. Each chicken will provide 4 meals. We don't waste any of it.

  

1 Whole Chicken, brined
8 small red potatoes or 4 large yellow potatoes quartered
1 red onion quartered
1 stick of butter
1-2 red bell peppers chopped into 2 inch chunks
salt, pepper, cayenne to taste (or seasoned salt)
1 orange or lemon (citrus)

350 degrees until done

Tuesday, 25 June 2013

Self Portrait Challenge and the Superhero Ideal

My days go by so fast they are a blur.
Random thoughts, written out. A self portrait challenge.

I don't like to ask for help and I don't like people to offer. I like the satisfaction of painting a room and finishing it and basking in the hard work of it all. I like that. It isn't always possible and I end up with help most of the time anyway.

 On one hand I have a great support group, those who have encouraged us and me to take on this lifestyle cold turkey and jump in feet first. It's been hard work, a steep learning curve, and a lot of heartbreak. Then out of the blue someone will say something like, "I was afraid you'd learn that lesson...." and do so in a way that very clearly communicates their patronizing pity. The kind of attitude that pulls the rug out of under your feet, just when you are wobbly standing anyway. The kind that says, "I was expecting you to fail and you did, ha."

The reason is that I hear that all the time...still. From the fellow pig farmer at the vet (my peer, that's right, I am a pig farmer too.), from other farm wives in town, from family members. I don't seem to have the strength or know how to them.

I do. I surprise myself everyday. I am strong enough. I might in fact, know more than the average farmhand that's been doing this for more years. I can hold a dying 200 lb animal in my very capable arms and bottle feed him water when we have no idea what's killing him. I can rock my daughter to sleep when she has nightmares about giant bugs eating her or roosters attacking the house. I can round up loose pigs with a smile and a whistle while grown men are swearing and stomping their tempers up (not that anyone here does that....). I can manage an emergency with a level head. I can put out fires. I can start fires. I CAN and I do, near daily, what needs to be done.

I cook on this. It isn't easy.
Why do people feel the need to treat others this way, especially others who aspire to be part of the "club"?   I find myself more and more walking away from people like this and tending to the branches and flowers that are supportive and nurturing friends.

And I have plenty of those.

And that is the kind of friend I want to be.

Just last week I dared say that farm life is hard. Out loud. In public. You know what? It is.

It is not all romance and daisies. Sometimes it stinks. Sometimes I get stuck in the mud and wish I had my cozy urban garden back or that I was just homesteading for our family needs instead of raising food for 60 other families too. (How cool is it that we have 60 families that buy meat from us! Very.) There are days that I want my husband to come in and read to the kids or play with them or help them with anything at all so I can make dinner or tidy up- but he's still outside moving feed, or hauling water, or chopping wood. We can't go into Des Moines together for dinner as a family because then we'd either be out too late or we'd miss locking up the sheep and coyotes would hurt and or kill them. That limits what we can do at the holidays when family cannot come to us.

There are days when the only thing that grounds me is heading outside alone at night just to stand under the open star filled sky and pray my gratitude to the heavens....in silence. In stillness. Under a universe so big that my problems and worries and aches are so small that statistically they don't even exist.

And those days are the days that I especially don't need deflating, pretentious, condescending comments about how if God wanted me to be successful on the farm he would bless me with an easy time. I don't need comments that farming is a natural extension of home keeping (because that's a load of naive crap). And I don't need anyone saying they, "know so and so who does twice as much and sleeps soundly at night happy to work hard, you should too and would if you had a grateful heart."

What I need is a nice cup of tea and a hot bath to wash the "mud" out of my hair and friends who do not emotionally sabotage me. All of which I have, thank you very much.

What does any of this have to do with being a super hero? Super heroes all have their weakness, their secret thing that can hurt them. I do too. I put my heart out there. I sometimes say what is on my mind without considering if it is kind first. I have only a few friends that take me for who I am, but know a whole lot of people who I have to walk barefoot on eggshells with.

I'm not saying this to get pity. What I am saying is that I aspire to be the mentor that others have been to me. I am saying that if you find yourself making passive aggressive subtle comments on a fb thread or in conversation, stop a minute and think about the hurt you might be causing someone. Do you really want to be the person who cause that kind of hurt? I don't. I caught myself typing a very clever response with some very subtle mean things very much directed at someone and stopped myself. I shut my computer and walked away. That's not me. That's not who I am. What you think shapes your actions, it is too easy to type it all out and feel clever only to to do the kind of harm that haunts you later.

So I thought I might list out the things I want to aspire to be, as a friend:

I want honesty, so I am honest.
I want kindness, so I will look for the kind way to do things or say things.
If I am doing something harmful to myself, I want my friends to tell me what they think.
I want friends who can accept me for who I am even when I am having a bad day.
I don't want to drop someone, just because they are struggling.
When things get broken or lost, I will not get angry and throw blame. I will pick up the pieces and be the one who scoops up the lost and weary.
I will encourage the gifts of others. I will smile at their success.
I will listen.
I will not try and solve problems. I will listen. I will help when needed.
I will not be passive aggressive.

I will shine. I will farm. I will love with all my broken heart. I will write. I will play. I will love.

I will fail. I will forgive myself and move on.

I will remember this every time I stand under that great big star filled sky, the heaven that has not changed in my lifetime, and I will be thankful for every sore muscle, every pain, every smile, kind word, blessing, and heart ache. For every milestone that we have earned and for those that just plopped in the road for us to get around.

I will not be afraid of what I see in the mirror. I will take pictures of myself, with my kids, of my kids, I will document our human experience.

That is my self portrait. 

Monday, 24 June 2013

Biscuits

Biscuits are easy:

Tell husband to go to the store and buy the pop can flaky homestyle kind.

Ha.

Seriously though, I don't actually make everything from scratch even though I can. Sometimes rolling out biscuits is just too much, too much time, too much mess, whatever. I grow and make enough of my own food that sometimes I get tired and take short cuts. I have stopped feeling ashamed of this, sometimes I also get coffee and pizza at the gas station (here in Iowa, that is actually some of the best pizza around!).

I do make biscuits though sometimes and they are good! Here is the recipe I use, from a book called "A Skillet Full- Lodge Cast Iron Recipes":

2 cups flour
2 t baking powder
1 t kosher salt
3 T lard and butter (2 T lard, 1 T butter or adjust how you like)
3/4 to 1 cup of WHOLE milk (don't cheat)

mix dry ingredients together
cut in fat either with a fork, a pastry cutter, or a food processor
when that mixture is "sandy" add milk until it is doughy, mix in with spoon
put on to a floured surface and roll out 3/4 inch thick

I use a cookie cutter or a mason jar to cut out shapes.

Bake at 450 degrees for about 15 minutes. Sometimes they take less time, sometimes more, just peek at them and when they are browning they are done.

My secret ingredient that is totally optional and not from the book? a 1/4 teaspoon of ground lemon peel. It really reacts to the baking powder and fluffs these puppies up.


Sunday, 23 June 2013

Gravy, it is all about the gravy.


I decided to split up my post about biscuits and gravy into two posts because gravy has earned its very own place in my kitchen.

Gravy is easy.

No. Really it is.

Oh, I know those of you unbelievers are shaking your heads now and thinking about just grabbing a jar or packet of gravy from the grocer.

Don't.

Gravy is just a roux base. I know, the term roux is fancy sounding and scary.

So, to start, the gravy I make for chicken fried steak is the same sausage gravy I use for biscuits and gravy. The exact same.

1 lb ground sausage
1  Portabella mushroom
2 T butter
2 T flour
1 cup chicken broth/stock
1 cup milk
2 T sour cream
1 T seasoned salt w pinch of cayenne

Start with a good ground sausage. Pastured pigs make the best sausage. I have used green onion, breakfast, or Italian sausage- they all work. I like the breakfast blend the best though. Fry it up brown. When it is half done, add chopped mushrooms. Brown until cooked and crumbly. Add butter. Once the butter melts add the flour and sprinkle it all over everything. Stir fast. Be ready with the broth. Once all the flour is wet with the grease and butter, add the chicken broth and stir furiously. It will thicken quick, add the milk when it thickens, stir furiously and turn the heat to low/medium. Add the sour cream and seasoning to taste. Turn the heat off entirely once it is as thick as you like.

See? Easy.

When making a chicken gravy, start with melted butter, add flour and stir until all the flour is wet, add 2 cups of broth and stir until it is as thick as you like. Season.

When making Alfredo type sauce: melt butter, add flour and stir until flour is wet, add 2 cups of milk and stir until it is as thick as you like, add 1 cup of cheese of your choice, gently stir off heat until cheese is melted, season. I like Asiago and Parmesan (Not the green can kind though, the real hard grate yourself kind, because I am a cheese snob. The green can stuff technically will work.)

Beef, lamb, chicken drippings, ect- all follow the same equation. Melted fat, add flour, add liquid of  your choice, stir furiously until thick and gravy.

Saturday, 22 June 2013

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.



Thursday, 20 June 2013

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.......

Wednesday, 19 June 2013

Funky Snowman......


On of the fun things I was "forced" to do since I was teaching in person classes is recreate a wardrobe of appropriate outfits.

I have really struggled with this. One, I hate shopping. I hate shopping for clothes. I hate trying things on. I hate trying to try things on with three active kids. I hate wasting my time. I hate going to places where the clothes are ugly/trashy/expensive.

Yeah. I'm cool with a chunky sweater and a pair of jeans. Barefoot. Ponytail.

Still, my students won't take me seriously if I show up barefoot with cake batter smeared jeans. So I thought about what kind of professor I want to be. What we pretend to be, we can be closer to being?  I no longer have the worry of getting pregnant again. I'm shrinking post baby, not expanding. So......

I started with Boots.

Added some skirts.

More chunky sweaters.

Some funky jewels.

A few white shirts.

Done. Totally done.

And then about six weeks in I started wearing a pony tail, jeans, and chunky sweaters. I kept the boots. They are rockin'.

It turns out that students respond better to a professor that is comfortable in who she is. Especially for Women's History.  Still, I learned a lot about myself in this and it was fun. I have a closet full of really fun dresses and shoes and I started wearing earrings again.

And then.......I dyed my hair purple. Why not?

Tuesday, 18 June 2013

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.......




Friday, 14 June 2013

Into The Fire and Out Again, Part 1




A few weeks back I posted on facebook that being a special needs parent was like surviving a fire. It changes things. I had a bunch of panic texts and calls from folks who thought I mean our house burned down. Gah. I should be more careful with my metaphors.

Everything is a before the dx and after the dx. You are stripped bare, burned straight through, and if you come out again, you are a different person. Not everyone survives this transformation, it reveals your core. If you were a nasty, uncaring, horrible person, God have mercy, that will be worse. If you were a parent on the verge of leaving your family, you will. If you had a kind soul, that blossoms,  your too tender heart breaks and never recovers. Everything is amplified.  I have seen women broken. I have seen them rise out of the flames again. I have seen parents who walk away from their children in the NICU. Walk away. Forever. I have mums on the message boards for 22q leave when they decided to abort their babies.

My heart breaks a million times for each of these children. I do not doubt though that these sweet babes are in heaven and I pray their families find peace.

For us, the fire was intense at first and has settled in to a stand by on alert. Isaac's what if's were so scary. We got a phone call from our Neurologist, not a request to come and talk, just a phone call. He told us the results. Told us not to google, to wait until the genetics department could schedule us in 6 months. Of course I googled it, before I was even off the call, I was on the Wikipedia page.

Go there.  See. And think for a moment what that would be like to be told that's what your child has. Try searching images online. The journal entries that state what a limited life your child will have.

Then, go to the facebook communities.

I know the doctors all warn us to stay on the pub med pages, to stay on the "legitimate" sites, but in all reality, those do not give a complete picture. You know what does? The daily lives of families living with it, some with multi generations of it, full grown adults, geneticists and doctors chiming in now and then too. Pictures of the kids on their good days. These good days are by far more numerous than the bad ones. And the children who don't survive? They parents stay on to hold our hands, saints in my book, inspirations to all of us.

When I started out in these groups I callously wrote one day that reading the posts of the really sick kids made me feel scared and anxious, how could I be a good parent like that? Especially when my kid is basically thriving under close supervision (at first we had 4-5 specialists)? I got schooled. I got schooled hard.

I learned more from that simple exchange about words and how they affect people, even people you don't know. How could I be a good parent while scared and anxious? Welcome to special needs parenting. Those things do not negate being a good parent. They just become white noise to your daily life, intensifying at times.

From that point I was more careful about my questions. I was less afraid to share my concerns or weigh in. I wasn't kicked out of the group. This community was compassionate and forgiving and freaking downright amazing. I have not yet met a single other child with 22q IRL (though my husband attended a dinner with several), but these families are who I go to with my most sensitive emotions and fears. Fears about my child's life, about my mothering, about keeping my family from resenting me or Isaac. Being vulnerable. It changes a person.

As I got to know these families, I learned that as adults many 22q children go on to be whatever they want to be. College? Yes. Grad school. Yes. Muscian. Yes. Parents. Darn good ones. Artists. Truck drivers. Teachers......pretty much the spectrum of what ever anyone else can be or wants to be. Yes, some have medical conditions that limit some of this, but mostly they do what they want anyway.

I have come to think the docs should add stubbornness to the 22q symptom list. Tenacity. Will to prove everyone wrong all the time. Trust me it makes for a difficult toddlerhood, oh my, but it will serve these kiddos well later in life.


To be continued......

And this post proves I can post from my phone. Blogging Revived.

Wednesday, 12 June 2013

Upcoming Series

I was asked to write our 22q story. I didn't start it in time to get it in the book, but I figured I will get it out there anyway. This will be a 4 part story and will be published over 4 days, or so. I hope you enjoy it as much as I am loving getting back to blogging and writing!

Thanks!