Letter to Myself for 2018

Dear Me,

Get ready to dance!

This is the year you will dance round the house. Holding it together with soft padded steps, while keeping up with the stomping of your 5 year old and the tumbling's of your weakened youngest. Try your best to side step with gentleness and patience, during the tantrums and melt downs. You've got this!

Tip toe lightly around the many puddles of puke and don't crack under pressure when the dietitian pressures you to keep your son's weight up. Try to leave your anxiety backstage as you struggle with his G-tube and the inevitable pneumonias. There will be hospital admissions, but remember you have a backup dancer who is amazing! Let him take front stage once in a while. 

Monkey wrenches will be thrown your way but you are light on your feet. Some you will avoid, others will hit you. Just remember that there is a choreographer, who knows the routine and will teach you the steps. Please take the time to learn the steps.

Slow dance in the kitchen with your husband. Hold each other and whisper "It's all going to be OK". Try to believe it.

Watch your 5 year old break dance and twirl round the room. Join in once in a while. Find joy in these simple moments that won't last forever. Remember that one day he might not want to dance with you, so do it while you can. 

Keep hope and find encouragement in the slow steady rhythm your special one dances to. His dance is hard. So unfairly hard. Feel confident in your role. You are doing the best you can. 

So remember to dance. Dance through the joy, the sorrow, the pain. One step at a time. 

Love, Joy and Blessings,

Me

Same old... with a little new.

Let's see...

Life has been pretty consistent around here.  Gideon has had multiple cases of pneumonia since our last post.  Only one required hospitalisation- for about 2 weeks in September?  The rest we managed to deal with in house.  This week he has an ear infection and is on antibiotics again.  So sleep has been a precious commodity.   

We have been using the feeding pump more.  We have had less vomiting when the feeds are slower and he seems to tolerate larger amounts.  We are still trying to introduce solids but the battle with oral sensitivity rages on.  We have started paying for a private OT who is regarded as a sensory guru in our area and are hoping to make some progress this year.

On the positive side on things, for the first time since before he had teeth, he brought food (a tortilla chip counts as food right?) up to his mouth and nibbled.  Sure he spat it out all over the place and kept wiping his mouth/tongue with his hand but I consider this a milestone in his sensory journey.

Later this week we will be meeting with the school in regards to Gideon starting kindergarten in the fall.  We are not sure if we are going to hold him back a year.   There are so many things to consider and it feels rather over whelming.   All the accommodations that need to be made make my head spin.

Look out 2018... Here we come, one day at a time.

Mantra for the Day

Can't seem to get this song off my mind - The perfect mantra for a sunny day and a little boy who just won't quit.

Gideon is on antibiotics again for an ear infection that is making his ear bleed.  Day 6 of 10.  Vomiting, blood stained sheets and mild fevers don't seem to hamper his mood.

Stomach Juice Morning Jolt

So after getting Alex onto the bus this morning, Gideon accidentally pulled out his G-tube.  Sometimes he "plays" with his tube - sort of flicking it with his hand, while we do bum changes.  This morning, it came right out, fully inflated.  Oozing stomach juices prior to my morning coffee leave me feeling a little uneasy.  Ok maybe freaked out is a better turn of phrase.  Yes I may have been just a touch frantic.  We have had the G-tube since June, so his stoma is pretty well established, but I remember someone saying that they can close up on you pretty quickly.  I've only observed the nurses changing it out once... so I've never done it myself before.  I was trying hard to flash back to our clinic a month ago.  So my first instinct was to reach for a temporary tube to stick in the stoma and then bring him to the ER were they had experience putting these things in.  I stuck the tubing in, taped it all down with some gauze and then realized that his stomach contents were coming out the other end of the temporary tube.  Plan B- I then tried to find a syringe to deflate the balloon portion of his old MicKey tube that had come out but for some reason, I couldn't get my regular syringes to fit... maybe I was flustered?  I opened my spare MicKey box to get the syringe that comes in the kit, deflated the balloon, inserted the MicKey into the stoma, but the water wouldn't stay in the balloon, it kept pushing back into the syringe.  Then, when I tried to pull my syringe out, a part of the MicKey was stuck to the end of the syringe.  Really?

Long story short- It took just over 2 hours in an ER waiting room (Good thing I had something in his stoma!) and 5 minutes to put my spare MicKey in. Now I have to order a new replacement (CHA$$$CHING$$$), after just putting the last one in a month ago.  

Oh well.  At least my post trauma Timmy's Roll Up the Rim was a winner. YEAH Free coffee!!!

Does loosing a G-tube make you anxious even though it's not "technically" a severe emergency? Does it get less stressful with more experience?

Toy Round Up

It's been a while since I shared some of the toys Gideon has been playing with.  He is over 2 years old now and he has been developing in so many areas!

1. Melissa & Doug Reusable Stickers - Gideon has been working very hard on his vision and memory skills and these reusable stickers have been great for this.  I've used these on white boards and on the fridge.  I pick out 4 - 8 animals and set them up in two rows.  I have him point to the animals while I name them.  Once he knows where everything is, I'll ask him to find a certain animal.  If it's no longer a challenge, I might mix the animals up or introduce a new one.  This is great practice for both his eyes (a sheep is much different looking than a crocodile) and his memory skills.  He has even started finding animals without me naming them first.      

2. Ever Earth Ramp Racer - This little toy has kept Gideon far more occupied than I expected.  The little cars are easy for his hands to manipulate and they make a really fun "click clack click clack" when they fall onto the next level of the ramp.  Design wise, there is one little flaw... the cars can fit sideways on the ramp.  If the wheels aren't pointed the right way, the car will just sit there.  This will result in Gideon becoming very sad!  I've tried to make it into an opportunity for him to sign the word "help".  I've also tired to turn it into a problem solving activity... but he just seems to get frustrated.  The nice thing about the design is that there is a stopper at the bottom on the ramp and the cars don't go flying across the room.  The cars are predictable and it's easy for Gideon to find them.  

    

3. Washable Crayola Crayons - Gideon has found his inner artist.  He LOVES to draw... ON EVERYTHING ; the floor, under chairs, his toys. (Which I try and discourage but he gets so into his pictures that they seem to spread everywhere) These washable crayons are great.  He seems to want to fill in all the white space :)

4. Melody the Musical Turtle by Leap Frog-  This thoughtful gift has been a huge hit with Gideon.  The buttons light up and there is all kinds of music.  

There are three settings: 

• 1. Press the buttons that light up to play a song.  The buttons are lit up in sequence, and you have to guess which song you are playing. 
• 2.Find the colours/numbers.  You have to find the colour or number on the turtle.  If you wait, the answer will light up for you to press.
• 3. Memory Game- You have to remember the sequence of buttons you have pressed.

5. Drums and xylophone - Gideon loves banging things to hear what they sound like.  We were given a small drum and a xylophone for Christmas (sorry no pictures) and he loves them.

To end it off, here is a special treat.  Gideon is not the only artist in the family, Alexander painted this amazing picture of a porcupine.  (He drew the picture and I labeled it)  Hope you enjoy!

Deja vu- The Journey of Finding Yourself - Again?

We are all familiar with those classic coming to age stories. Teenagers go on a journey and "find themselves" though a series of misadventures.  These misadventures help define who they will become and, by the end, the characters have obtained a self identity and a purpose or direction.  No longer will they wonder aimlessly through life, they have gain enough experience to navigate this world, confident in their steps.  

Classic example- Stand By Me 1986

I thought I had finished my journey, that I'd already paid my dues.  I had my coming of age story played out during my late teens/early twenties and I was confident in who I was, what I believed and in which direction I was headed.

Well educated, happily married, career focused and a child to love.

Then life throws you for a loop.

After our second son was born, my self identity drastically changed.  Yes I had identified as being a mom already and it was a large part of who I was, but it wasn't the only part.  

The erosion started slowly.   

I stopped hanging out with friends.  Gideon needed me 24/7.  He wouldn't eat or calm for anyone else.  We had to cancel get together due to illnesses and we didn't take day trips on the weekend anymore.  My leisure activities dwindled as I was left with less free time for myself.  Gideon had sensory issues and was not able to tolerate going outside for more than a couple of minutes.  He would gag/puke with a breeze or if the air was too cold.  I was reduced  to tv watching and googling medical terms.  The appointments and hospital admissions were exhaustive and it soon became clear that I would have to put my career on hold to make sure Gideon would have the best start in life.  

After 2 years of this, my identity has been almost completely consumed/defined as a mother, a caretaker, a homemaker, and a struggling wife.  And the funny thing is, it sometimes feels like I'm failing in these, as restricted and limiting a definition as they are.  The laundry is always backlogged, I feel like Alexander is getting shafted when it comes to attention, and I feel under pressure to get all of Gideon's goals meet, which seem impossible when he has so many: Feeding goals, speech goals, physio goals, sensory goals, vision goals, social goals on top of medical demands.  I'm not saying I don't enjoy being a mom.  I love my children immensely!  I wouldn't give up my children for the world.   The thing is though, EVERYTHING in my world revolves around my children, and I don't think that is balanced or healthy.  

Now I find myself taking a breath. 

I want to identify myself as a woman, a wife, a friend, a family member, a creative mind, a traveler, a musician, an advocate, a person who makes amazing homecooked meals.  I want to be someone who dances to music and smiles more often.  I want to be hygienic and hairless.  I want to feel whole and spiritual.

The second coming of age journey needs to begin.  

Did you feel like your self identity slipped after you had a child with special needs?

Thoughtful Christmas Gift

My sister gave me this very thoughtful Christmas gift and I thought I'd share it.

This necklace is from Leigh Luna Jewelry and I love it!  They do some beautiful work over there as well as some custom designs.  This one has the names John, Alex and Gideon on it in braille.  Well... reverse braille?  They punch the dots instead of emboss them.  I'm head over heels and not ashamed to admit that I teared up a bit when I opened the gift.  

Since having Gideon come into our lives, I feel like my identity has been expanded as an advocate for children with special needs and for families with children who have complex care needs.  I have this desire to be strong and to let my voice be heard... but I also feel burnt out and tired.  I know that wearing this jewelry is not the same as burning down the gates of the Parliament,  but for me this necklace is both beautiful and symbolic.  It's a small way of feeling like I am letting other know that there is diversity in our families and if a stranger asks me about it, I'll gladly get on my soapbox.  

How are you advocating for the under acknowledged in your life?