Big Complicated Feelings

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That's what is on my mind tonight.

Lily's Night Out

Lily is getting to be so much more muchier. She helps more, she talks more, she does more. Everything is so much more.

Every week she and I take an art class together. This one on one time has been great for us, so much so that we decided that one other night each week we should take a walk together or take the boat out at dusk. We have had lovely talks. This week she asked if I could help her create a vlog for her to narrate and demonstrate certain tasks for other kids. She wants to start with how to tie a hook on a line, choose a worm, and fish for catfish. Cool idea, eh? Look for that soon.

With responsibility comes privilege and slowly we are figuring this part out too.

I am so glad I get to spend my days with her. She is such a neat kid with big ideas and dreams and imagination! At art class we were asked to make dessert sculptures. Everyone made cupcakes, pies, cake slices, cookies......Lily made a bowl of pudding and added snails to it. That's my girl.

She's always thinking and doing her own thing. She's got that spark and does not see the need to conform to what the other kids at the table are doing. How do I preserve and protect that gift? Nurture it? That question keeps me up at night.

She also asked to take over washing lunch dishes. Yes! Score! However, she'll only do them on her terms. She has to sit on the counter and she wants to use the sink full of soapy water method, not the always running hot water method I use. She says that I am wasting water. True.

Lily is a complicated girl though, she feels so much more love and passion and so much more anger when she's mad. She is a five alarm fire, like this song goes.

Soon she will be nine. I have had her in my heart nearly all my life. She is my dream come true, my prayers answered. Lily is the child that taught me to be a mother and continues to teach me everyday.

I look forward to celebrating nine with her, baking her a peach pie and making soup for dinner. I look forward to reading books, making art, and singing loudly in the car. This year she wants to learn cartography and navigation. Easy enough!

 I still have not figured out the special gift from mama that I give her every year. Suggestions welcome!

The Hungry Caterpillar (aka Tobacco Hornworm)

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

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

It was amazing.

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

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

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

Farmhouse Kitchen, What's On The Table Tonight

First course: Bacon on a plate.
Anyone helping prepare the meal, set the table, and catch up on dishes got to snack on bacon.
It is a pretty big motivator at our house, especially considering that we have been out of bacon for six weeks. I had to go to Piper's where we have inventory and buy it. Ha!

Second course: Lamb ribs with cider and crabapple honey glaze with spices, salt, and pepper, Snoop Dogs Mashed potatoes courtesy of Martha Stewart, and buttered corn. Pan fried beef ribeye was also on the table. I'll see if I can figure out where I wrote down the glaze and post it later this week.

I wanted to make African Pork Ribs, but we are so low on inventory that I was out of those too. Crazy.  I was worried that lamb ribs would be tiny and not meaty, but I was completely and utterly wrong about that.

Dessert: Peach Pie. Simple Peach Pie. I made a standard All American double crust, the speedy way in the food processor, took 3 pints of home canned peaches (two were brandied peaches), drained them, added 3 T of cornstarch, 2 T raw sugar,  mixed with peaches, cut out strips for a lazy lattice, and a sprinkle of cinnamon on top of the crust. Oven at 425 until bubbly and brown.

 

I realised that the thing that was off in my pies was the spice. These peaches have so much sweet and flavour that they do not need more sugar and do not need any spices to shine. Shine this pie does, simple, brightly flavoured, the Missouri peaches really brighten the farmhouse kitchen and THIS is why people drive from the coasts, weary, to rest at my table, fork in hand. The world needs more pie like this.

Recipe in detailed pictures to come. I'll have to make another pie. Maybe for Saturday's Apple Pressing party. Cheers!