Monthly Archives: November 2012

Little whale tail newborn hat

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I had a whale of a time knitting up this little hat. It’s for a colleague of mine who is expecting her first little peanut in the New Year.

It was a quick knit I worked on in the evenings last week – a break from this project that I’ve been working on since August (if only  there were more time in a day I’d have that sucker done already).

Want to knit one of these up yourself? You can download the pdf instructions for free here. Enjoy!

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Mug full o’ kisses

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Last Thursday Eric and I celebrated our fourth anniversary. I surprised Eric with a mug full o’ kisses that evening.

I got the idea off of pinterest – you can see my inspiration here.

I decided to write the vows I said to Eric on our wedding day, so he can remember how much I love him every day when he has his morning coffee.

Eric surprised me with some lovely calla lilies (our wedding flower) and some chocolate.

It was a bit of a rough day with Maddy, but a nice evening with Eric. Four years under our belt and looking forward to what number five will bring us.

 

 

Four years

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I remember four years ago like a still picture in my mind. Four years ago, giant snowflakes were falling slowly from the sky. Four years ago, we were surrounded by our closest and most dear friends and family. Four years ago, I looked Eric in the eye and promised to love him always.

Four years ago, Eric said,

I am standing united with you today because I believe in us.
I believe in our past, built on a deep understanding and caring for each other, I believe in our future, one built on love and trust as we grow together.
Together, we feel a deep connection; a connection that has developed into a loving bond.
Knowing the woman you are today, I can’t wait to see the woman you will become as we continue our life together.
I love the excitement and vitality you bring into our relationship, and the joy and laughter you bring into my life.
Each day as we fall in love a little more, I will cherish you and support you.
I will be your best friend and share in all your hopes and dreams.
It is my solemn vow to give you this love, with all my heart, forever.

I was barely able to respond, the tears flowing much easier than I would’ve liked.

Today, I join my life with yours.
You are my dearest love and my best friend.
In your eyes, I see our future in a sea of hope.
In your arms, I feel continual support and comfort.
In the touch of your hands, feel love.
I pledge that I will listen when you speak, and when you don’t speak, encourage you in times of doubt, and believe in you no matter what.
I will be faithful to you forever,
I will be honest with you always,
I will cherish and adore you every moment of my life.
You have awakened my soul and made me reach for more.
You have planted a fire in my heart and brought peace to my mind. This is the love you’ve given me.
It is my solemn vow to give you this love, with all my heart, forever.

Our day was captured beautifully by an incredibly talented woman, Kirsten Loop, of Loop Photography. I still look through our photo albums frequently, so thankful we have these memories.

A lot has changed in four years. I graduated from my MSc. program. We bought a house. I entered and left a doctoral program. We had a beautiful baby girl. Our beautiful baby girl was given her first diagnosis. I started a new job. But, you know what hasn’t changed at all? The love Eric and I share. Okay, it has changed… we love each other more than we did on this day in 2008.

The last year has been challenging. It has been stressful on our relationship. We argue more than we ever have before. But, our arguments are a result of feeling helpless and frustrated, and we’re not really angry at one another while we’re having them. Sometimes we’re just angry at life. Our arguments often end by one of us saying, “Sorry, I’m not really angry at you, I’m just feeling angry,” and that’s that.

Sometimes it makes me sad to think of how optimistic and hopeful we felt on our wedding day – like we could conquer the world together. Then, life happened. As time passes, we’re slowly learning how right we were on our wedding day: We can conquer the world together – we already are. It’s just not the world we thought we were going to conquer. But, really, that would be pretty boring, wouldn’t it? To wake up and live the life you always thought you would lead.

This life is not the life I would have chosen for us. I would take away the 12 hours of therapy every week (that includes driving time, just to be clear). I would take away the frustration Maddy feels when she isn’t able to communicate with us. I would take away that deep worry that exists in our guts, simply because we are parents. I would take away the stress of considering the financial implications of long-term therapy. I would take away the therapist hat that Eric and I each wear each and every day and replace it with just our mommy and daddy hats.

I would take all those things away if I could. But, I wouldn’t take away the life that Eric and I have begun to build together. I wouldn’t take away our past, present or future. I wouldn’t take away the beautiful little girl we have been blessed with. I wouldn’t take away all of the tough, but important lessons we learn every day with our unique and very special babe.

I’m so thankful for Eric. I’m so thankful for our relationship. I’m thankful at how forgiving we each have learned to become. I’m thankful that through Eric, I’ve learned to be less stubborn. I’m thankful to have someone in my life that helps me to let go of the things I can’t control or change. I’m thankful that Eric makes an effort every day to truly understand all of me. I’m thankful that my daughter has an amazing daddy who loves her for who she is, and not for who he wants her to be.

Eric, your biggest strengths as a husband and daddy are the pure and unconditional love that you always offer, even on days when we might not be the easiest to be around, and your acceptance of us, all of us, the good and the not-so-good. Thank you for helping me to learn and grow. I don’t know what I would do without you in my life. I love you, with all my heart, forever. Happy 4th anniversary, love.

Shining moments

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A quick post to share the shining moments of the weekend:

  1. On Friday, we had dinner with some lovely friends of ours – my friend, Catherine and her hubby Tim. It was a heartwarming moment when Catherine was leaving the room and Maddy approached her and gave her a hug. We have never seen Maddy do this to one of our friends before. I can’t blame her either, Catherine really is that awesome.
  2. Maddy attended her second Santa Claus parade on Saturday. I almost cried watching her wave to all of the people on the floats. She has had to work so hard not only to wave, but to wave at appropriate times. What’s a more appropriate time than when a float full of smiling waving people passes by?? It was a really special moment for our family.
  3. This weekend Maddy has finally started using ‘Mama’ appropriately. We have been modelling this for her since she was about 10 months and started using it inappropriately, and in succession ‘Mamamamamama.’ She has used it this weekend to get my attention (without the screaming and crying she usually uses), to get me to look at something, and when she wanted whoever was holding her to pass her back to me. Sweetest sound!
  4. We have worked for months to get Maddy happy in her high chair. Eating has always been a big challenge for Maddy. I am confident in sharing with you that we have successfully made this step. Maddy “eats” in her chair about 90% of the time these days. She doesn’t always ingest food, but she will at least sit with it in front of her without a meltdown, if even for only a couple of minutes. Tonight we had a first. We modelled kissing pork and baby spinach – she imitated! So, we modelled licking pork and baby spinach – she imitated! We modelled eating pork and baby spinach – she put them both in her mouth and chewed a couple of times before pulling them back out and throwing them on the ground! This may sound small – but it is amazing progress and incredibly difficult for her. I am so proud of her!

If anything, what these past 17 months have taught me is that nothing can be taken for granted. The sweet sound of baby giggles, the shy smiles, a simple wave, hearing your babe call you ‘mama’ for the first time, an attempt at trying a new food – these are all things that need to be celebrated. These amazing things almost take away the moments of cleaning up after Maddy threw up all over herself (a newer development that happens at least a few times a week in our house after Maddy eats). But, hey, we’ll take it!

Is love enough?

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Pain is a funny thing. Sometimes it hurts more to see the people you love in pain, than it does to actually feel the pain yourself – even if you’re feeling pain for the exact same reason. Are you with me?

There are a couple of distinct moments in my memory where watching someone I love in pain has made my heart ache more than I can describe. Some of these experiences have been more acute than others, but the ache is a distinct feeling of helplessness. During these times I would wish that I could just fix it and make the pain go away for them, or at least take some of the load off of them to make it more bearable. As we all know, life just doesn’t work that way.

I feel… a lot. I feel things deeply in my core. If I hear a News story that irks me, it can bother me for days or sometimes weeks. I really have to work to let go of the things I can’t change or control. Eric, on the other hand, is much better at intellectualizing things that are upsetting. He feels them too, but in a much different way than I do. He doesn’t tend to put himself in the shoes of strangers he hears about on the News. Some might say that I have a constant flow of feelings, sharing them with every person I cross paths with, whereas Eric keeps a lot of his feelings to himself, only allowing a few close people to see them when needed.

This past year and a half raising Maddy has really exhibited these differences strongly. I talk about our situation, blog about how I’m coping, and share almost everything with anyone who is interested. Eric, on the other hand, keeps his perspective of our experience closer to him, thoughtfully making decisions on who he needs to talk with.

Thankfully, at some point along the way we came to an unspoken agreement – we each allow the other to do what we need to cope, even if it’s not the way we might choose to deal with the situation. Each others choices might sometimes put the other in a spot that is somewhat uncomfortable, but we know that we are different, and that in order for us to move forward, we each need to do what works for us (within reason, of course). Neither of us trumps the other when it comes to how to deal with this.

We cope differently. I throw my pain out into the world, hoping that someone might be able to catch a little piece of it, lightening my load. Eric keeps his pain closer to his core, allowing specific people the opportunity to slice a little away from him.

Whether it is a result of the different way we cope, or just part of the nature of being human, watching Eric hurt is way more painful than hurting myself. He can go days next to me, where I’m falling apart at the seams, and he is somehow managing to keep it together. But, I know to expect it, there always comes a day when he is the one falling apart at the seams and I’m at a loss of what to do for him.

The things I want to do for him, I can’t. I can’t make it so that we can sleep well at night. It doesn’t matter who wakes up with Maddy when she gets up one of the several times in the night. She cries, loudly, and it often wakes us both. I can’t give him the answers we both so desperately want. I can’t make it easier for him to concentrate at work (heck, I am having the same struggle). I can’t take his worry about Maddy’s future away. I can’t keep the house clean and organized in a way that would make our life feel less chaotic. I can’t create more time for us to accomplish all that needs to be done. All I can do is love him. I want love to be enough, but sometimes, it’s not.

The end of the beginning

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It’s graduation day, folks. Well, that’s what I’ve dubbed it as. Maddy officially completed the second phase of the “Getting Ready to Learn” program. Hoorah! Eric and I were able to peek in on her last session to see what she has learned. She was in a bit of a grumpy mood and so we weren’t able to see everything she’s accomplished, but we got a glimpse.

Last night I was feeling really anxious about today. What were they going to tell us? Was this going to be the beginning of the end or the end of the beginning? When Maddy started this program, they had said that some kids only need “Getting Ready to Learn” and then they’re caught up and ready to continue on their own. My heart and my head were telling me different things.

Heart: She’s all caught up! Yahooo!

Head: Erm… not so much.

We got a ton of fantastic news today. Maddy has really shown the incredible ability she has to learn. She has knocked skills off of their list like a rock star. She has made huge gains in her development.

We also learned today that Maddy is still delayed.

For those of you who have not been through something like this with a child, I will explain why this is significant. Watching your child make progress in therapy is very confusing. You watch the progress and wonder how far that progress is: Is she age appropriate now? How much more progress is needed before she is age appropriate? You begin to notice less and less obvious differences between your child and other similar-aged children, but you aren’t quite sure what that means.

The root of all of your questions and observations is: How much longer will we need to have therapy in our life?

Your heart tells you that it won’t be that much longer. Soon it will be a distant memory. Somehow, though, your head knows that to not be true. Today, our therapists confirmed that for us. Despite incredible progress, we still have a ways to go.

Progress made. More progress needed.

I’m happy, but I’m sad.

We’re diving right into a new plan. We’ll start with an assessment: VB-MAPP (Verbal Behaviour Milestones Assessment and Placement Program). This will give us a clearer picture on where exactly Maddy stands in terms of 18 month milestones – What is she on track for? What is she ahead of? And what is she behind on? Every so often the therapists will re-assess Maddy using this same program to track her progress.

The information from the initial VB-MAPP will be used to develop a Maddy-specific ABA (Applied Behavioural Analysis) program. The intensiveness of her ABA program will depend on the results of the VB-MAPP.

I also completed a 2 hour telephone intake with Thames Valley Children’s Centre today, and we will work on how we can incorporate their services with our current services at Blue Balloon.

Maddy graduated today from “Getting Ready to Learn.” This step is the end of the beginning. From here we are moving forward to find the right supports Maddy needs in order to learn and be prepared for future success. Therapy is part of our family’s life, and though my heart will continue to hope, it might be for a long time moving forward.

A day of messy play

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We have had a really good weekend. Maddy is continuing to amaze us with her progress. She is more expressive than ever – smiling and giggling more than I knew could be possible. She has a new expression: a surprised/impressed mouth wide open look. As non-therapists, we believe her social language is improving by leaps and bounds. She is imitating vocal sounds here and there, which is really exciting. We are eagerly awaiting a couple of reports to see if the therapists have the same view of her progress that we do.

We are still struggling with daily tasks – eating, sleeping, behavioural issues – but we are awed and amazed by the growth we see in Maddy. From week to week, our therapists notice changes as well.

Both Eric and myself expressed that today was the best day we have ever had as a family. It was incredible. Maddy was happy, engaged, and didn’t struggle with some of those daily tasks we often find challenging. She ate real food (after being on a cracker/rice cake diet for days). She was having such a good day that we were able to get out and enjoy it together.

We had a really fun time at the park. Maddy would stand and watch the other kids use the playground equipment then she would turn to us mouth wide open, looking all impressed, and then she would smile and start clapping for them.

We followed playing at the park by eating lunch out. It was the second time in history that Maddy did well in a restaurant setting. It was interesting to us, because the last time she did well in the same setting had two similarities to today: it was preceded by a bike ride with Uncle Scotty (lots of sensory input, which she also received at the park), and the restaurant was basically empty (meaning it was quiet). We have noticed that sometimes in noisy settings Maddy really struggles. We don’t think she’s sensitive to volume of sound, but we and her therapists wonder if the chaos of different sounds coming from all around her makes it hard for her to focus and concentrate.

After a trip to the grocery store, where Maddy did exceptionally well, we went home for some messy play. Messy play is a great way for kids to explore textures, particularly textures they find difficult. Our original aim for doing this was to focus on the tactile defensiveness Maddy experiences with her feet (having things touch her feet can often lead to meltdowns – we have previously focused on her hands, mouth, legs, and waistband area). We decided that at the same time we might as well let her explore food in an environment that doesn’t make her feel pressure to try it (because it’s in a play environment, different from her eating environment). We had a lot of fun.

Our rules for messy play:

  1. The dog must not be in the same area of the house.
  2. Before exploring the textures, we must provide deep pressure touch for Maddy to help her handle the upcoming stress caused by the texture play.
  3. A wet cloth must be close by to allow Maddy a chance to “clean up” if she finds a texture too stressful. This helps her to learn that she can reduce the stress herself, and doesn’t need to rely on us to wipe it up.
  4. Maddy is in complete control of experiencing textures, but we can gently guide her play by showing her new ways to touch the items (for example, that an orange slice can be squished in your hands, or that baby corn can be rubbed on your arm or belly).
  5. And most importantly: The messier the area, the more successful the play.

Textures explored today:

  1. Uncooked rice
  2. Uncooked oatmeal
  3. White sugar
  4. Brown sugar
  5. Sunflower butter
  6. Clementine slices
  7. Cooked baby corn
  8. Cooked yellow and orange carrots
  9. Cooked soy beans
  10. Cooked snap peas
  11. Cooked garlic sprouts

Maddy started her play by throwing the rice and oatmeal all over the kitchen floor.

She then started mixing the rice with the SunButter. Maddy really struggles with the texture of SunButter, often having a meltdown if you place it in the vicinity of her eating area. I encouraged her to play with the SunButter with a spoon, knowing that she would find it very stressful to use her hands. She became very agitated when the SunButter fell off of her spoon and onto the floor. Rather than clean it up, I distracted her with the other textures in an attempt to allow her to experience that the world will not end if it is near her. Surprisingly, it worked!

With some encouragement, Maddy touched her lips to both the carrots and the baby corn (she did not eat either, but touching them to her lips is a huge step for her – she still refuses to eat any vegetable).

She put some SunButter in her mouth, but immediately became distressed and spit it out.

She squished a clementine slice, and rubbed it on her belly (the first time she’s even attempted to touch an orange-like slice).

She tentatively touched the brown sugar – the granule texture often difficult for her. She touched it to her lips… and then looked at me with a big smile and said, “Mmmmm.” For the next five minutes or so she licked her fingers clean, only pausing once to offer me a lick.

We are very much looking forward to our next messy play adventure: painting with tomato sauce, salsa, and other sauce-like substances.

All in all, it was a wonderful day. Most days, each of these tasks is challenging enough that we only attempt one in a day. We are awestruck that we accomplished all of them with relatively few bumps in a single day. I am so happy that even for a brief moment we were able to forget that Maddy has special needs. Instead, we were focused completely on having fun. It felt so good to be able to focus on fun again.