Photographs by Laurie @ Horizons Photography

August 26, 2015

Labels

I have always been wary of a label for Josh... once upon a time there was a doctor who insisted that Josh was autistic because he couldn't speak. I fought back and got him assessed by another set of doctors who quickly shut down the autism diagnosis and said that his language was a stroke issue and it's been that way for many things in his life. I hate labels! However, one label that I have not been able to argue and that has stuck with him through out all the assessments, through school (to date), and which has become an increasing problem at home is just three letters. ADD (the acquired variety and without the hyper active component). I have known that this is an issue for some time now and I have learned that it happens in many kids with CHD, but last year it became a growing and more pressing concern. I sought help from a few doctors and finally on Monday it was decided to put him on medication to help him; and to give him his best shot at his new school. Since we now know that he doesn't have an LD and he isn't language impaired and that he is in fact in 'catch up' mode we agreed that we want him to have the best possible chance at learning that we can give him. He started on the mediation yesterday morning...

Today I went for a walk with him... and for the first time in his life (NO KIDDING)... we had a back and forth fully understanding and understandable conversation. We covered two topics on the entire outing and we talked. He asked questions, he waited for my reply, he considered my answers and he responded in kind. I am so full of hope and so fully aware of the blessing that this is. Label's it seems can sometimes be good things.

There is a down side... and this is something that will require patience and prayer... and prayer for patience...

Last night... Josh was still wide awake at almost 12am! This is a kid who typically goes to bed at 7pm  and often asks to go to bed. In fact three times this week he has asked to go to bed BEFORE his brother! Josh didn't start sleeping through the night until last November... almost a full 7 years of sleep deprivation... I am afraid that this new medicine is taking us back a step, and yet already I can see how much he needed/needs it. There is hope of course, hope that he will grow accustomed to this new medication, or that last night was a one off... if it's not I have a lot of sleepless nights ahead I suppose.

The end result of course is only that today (though I am totally worn out after sleeping (sort of) beside him for most of the night, I am more hopeful than ever about this man who has taught me so much. I find myself excited to see the changes and growth! :)

L

P.S. Coffee intake will go up... is that possible?

July 28, 2015

The Haughton Escape




This past week Tim and I were able to take the boys on a much needed holiday together. We drove south east to the Adirondack mountains and stayed at a small out of the way cabin on Star Lake. It was so quiet, so peaceful and though the city girl in me got itchy towards the end, now that we are back I can say that it was so restful and nice to get away.

On the first day of our adventure we hiked into the Ausible Chasm and took a river raft ride, and then with less than stellar wisdom we chose to climb Mt. Joe. Tim and I hadn't been planning this trip for long, and the only thing we read up on the Mountain was that it had a family friendly trail... my idea of family friendly is different. It was a proper mountain, the path which started in a nature hike sort of way quickly transitioned into a rock climbing, dirty adventure. We saw the red spotted newt, lots of various mushrooms and Tim spotted a snake, which when he went off trail a little to see ended up with him having a broken shoe. You see, in our enthusiasm to hike this family friendly trail we didn't stop to change shoes, Tim and I climbed this thing in our croc flip flops! Tim climbed the rest of the way in bare feet. As the mountain got steeper and the path gave way to a creek bed (full with water running through it) I soon gave in and carried my flip flops too. It was simply far less dangerous to do it without the slippy shoes. Kaleb loved the climb, Josh struggled but with some rests we managed to get all the way to the top. Of course, we all know that climbing down and can be just as dangerous (if not, more so). Josh doesn't like to watch where he is going and gave me a number of near heart attacks that caused me to hold his hand 90 percent of the way down. I joked that if we all reached the bottom without a broken bone then it would be a success. It was Tim who was out down fall... half way down Tim's foot slipped in the UNENDING mud and he broke a toe! Thankfully, he managed okay and we all made it safely (unless you consider Tim's toe) to the bottom where a lake sits waiting for you to jump in.

As we drove back that night with an exhausted Josh, we had to think about the fact that just a few short months ago this little man had a valve replaced. This kid did it, and though there was some complaining done by him and I on the way down it was more to laugh instead of cry. He was quick to tell me (numerous times) on the way down that he 'will not climb mountains when he's big' or 'he's not a mountain climber' and after each time we shared a giggle. The not so family friendly hike was while not 'fun' with all the anxious moments of waiting for one of them to fall off a cliff, was a moment to witness Josh accomplish something that I didn't think he would ever be able to do. I don't know if he understands how big a deal it is... and that just makes it that much better.

Kaleb discovered a love for fishing and spent time learning all about various animals... his big highlight came at the end of the trip, our last night to be exact when he was able to bring me home a huge 15 inch bass!



All in all, it was a really wonderful time away with my three favourite men... though I am glad to back in the land of bathtubs and laundry machines :D

June 16, 2015

Courage

Today I had the amazing opportunity to sit front row and watch Josh receive an award for courage at his school. I must admit I bawled... and so did a number of other parents. Josh jumped up when his name was called and ran to the front and stood proudly while the teacher talked about his courage in the face of adversity and how quickly he rebounds and gets back to school and back to getting his work done. What a beautiful moment! After receiving his award he scanned the crowd, found me and threw me a big thumbs up; which prompted many more tears! :) So proud of my guy today!




"It is my pleasure to give Joshua the courage award. Joshua is receiving this award because of all the perseverance he has shown us in completing his school work despite multiple surgeries he's undergone recently. Joshua has always been happy to return to school after each surgery and eager to learn and participate. He has always been willing to catch up on missed work and recently impressed us when he chose to spend recess time in the library to start and finish a project he'd missed because of the surgeries. He drew a beautiful map of his neighbourhood and without any help he made sure his map had a legend, colours, symbols and a compass rose! Good job Josh!"  His teacher.

June 9, 2015

Insanity is coming to an end...

It's been a long two weeks... I wrote last about Josh's amazing assessment and hours after that post we had a call saying that his eye surgery would be that week. On May 28th, just one month post op for his heart Josh went again into the OR to have his eyes corrected. Every time you send your child into the OR, be it for something serious like heart surgery or mundane like eye surgery, there is an anxiety that can't really be described. We have done this too many times, he has suffered too much. The amazing thing though, is how he copes, how he braves the challenges that are set before him. I have seen him literally laugh in the face of these challenges and I have seen him rise above. May 28th was also the day of his big school transition meeting, and a large BBQ for Tim's work. It was a nutter day... a fully insane day. Yet, as I lay down in bed that night I realized two things.

1) He now has the entire summer to not worry about surgeries or appointments (once we get through his last one tomorrow) For this summer... he can be a kid. That is a really really great thing! He so deserves that after this year!

2) While it was a lot in one day... we managed it. We had help (we couldn't have done it all without a lot of help) Tim made the school meeting and advocated for Josh, getting him placed in the exact program I had been hoping for in Kaleb's school! (Both boys in the same school FINALLY will take a large burden off me next year). The BBQ was a success and Josh... well, he was home and his own bed so I have nothing to complain about there either.

The first few days post-op were (in a word) brutal. The first hours of recovery they wouldn't let me in the room because he was 'having complications' ... as it turns out they are a day surgery post-op recovery so they don't often have heart kids in there. They were freaking out about his SAT levels and heart rate and blood pressure; and thought that he was having trouble. Finally I begged to be allowed in and once there, I saw that while he was not doing great, it was all down to the fact that he was anxious and in pain and scared because he couldn't see. (Who wouldn't have high BP or a fast heart rate in that situation?). I sat beside him and explained that he had a patch in his eyes and that he was in the recovery room. We talked about the patients in the beds beside him, the nurses and what they each looked like, and as we talked he settled. We gave him some powerful pain killers and he slept, deeply, his SAT levels dropped and alarms started going off, sending our nurse into a panic. (It was actually a little funny). I reached over and silenced the alarm, moved the O2 mask to his face and his levels normalized... at that point she bowed to my wisdom and calmed right now. Within 45 minutes of being allowed to see him he'd had 3 freezies and was in a wheel chair headed down for a blueberry muffin at Tim Hortons' (his new favourite treat). The wisdom here is the power of healing that can be found in a mothers love. (not trying to bolster myself here either, it's a statement of fact. Kids need their Moms).

The surgeon had warned me that 'recovery would be hell' and she was right. He was in so much pain, and Josh's eyes are his weak spot. When he's anxious, scared, tired, worried, sad... he rubs his eyes. It's always been that way and here, in the midst of great pain and anxiety and he couldn't rub. For two days he couldn't open his eyes they were so swollen and painful. However, on day three he woke up feeling so much better, by the fourth day he was back at school and came home almost euphoric. He is a different child these days. He's so much happier, and though he can't explain why, he says he can see better, and given the happy child running around our house these days I would say it was worth the pain of those few days.

I also had the chance to see what a beautiful man our Kaleb is turning out to be; he care and compassion for his brother through this process has been an honour to see. He guided him, fed him, retrieved things for him, described things to him when he couldn't see and one morning, when he could see that Josh was needing to hold the cloth over his eyes (the only thing that brought him comfort) and try to eat, he jumped up, grabbed the cloth and said 'Ill hold this for you Josh, that way you can eat and mama can drink her coffee'. He is a beautiful child, who is being shaped by this journey just as we all are. It's humbling and awesome to see.



It's been a long few weeks, sleep in this house is a luxury, Kaleb's asthma is bad again and both boys are alternating nights of nightmares that keep us up. BUT... and this is important... Summer is coming quickly. Just a few weeks left of school, a few last appointments for the boys (Kaleb for asthma related stuff and Josh for his ECHO and post-op). We have two graduations, Kaleb is graduating kindergarten and Josh is graduating out of Bloorview. Then... then it's all just fun and summer rest! I am counting the hours!!


May 25, 2015

I am FLOORED... Awed and left humbled.


Ever since Josh turned one years old we have been struggling through the process of stroke repair, (his stroke happened at 3 months of age) language development and endless hours of therapy... it's been a struggle, a discouraging endless struggle. I have seen countless doctors, therapists and spent hours on the phone getting assessments and support. We fought every step of the way, we had to learn patience, we had to accept help, we had to battle the discouragement...

Last October Josh was diagnosed with epilepsy (resulting from the stroke) and he was given medication to prevent the seizures...

This year is his final year at Bloorview and at the start of the transition process I asked if we could get another psych assessment done because the medical situation was different (i.e., the seizures were being kept under control and he was finally - for the most part sleeping most nights). I wanted to know if those things would change his overall outcome.

All along this process we have been told that Josh would always have a language impairment, that he would likely always have a learning disability, and that we would have supports in place for him as he needed them. In other words we were told 'to get used to it, this would be his life'.

Today I got a brief overview from the phycologist who did the new assessment on Josh.

She said that the results were so dramatically different (from his assessment last year - just one year) that she had to score it twice thinking she had made a mistake... TWICE! His cognitive abilities (verbal and visual) have gone from seriously impaired to AVERAGE for his age!!! Let me repeat... VERBAL SKILLS ARE AVERAGE!!!! This is HUGE!! HUGE! I can't stress this enough!! We have been told all along that he would have a learning disability his whole life... yet they now say that they can't classify him as an LD because it's just not 'bad enough' and they feel that he may well be in 'catch up' mode. They want to re-evaluate in grade 3 to be sure but feel that given his current rate of advancement it's entirely possible that with some help he can catch up without issues. That with all the school missed, with the seizures, and the other medical situations it could explain why he's behind and they feel that with added help he can catch up no problem.

I AM FREAKING OUT!!!! How awesome is God!?! This is such a HUGE answer to years of prayer... I don't even know how to articulate myself properly! When I think of all the little details that had to fall into place for all the different supports we have had... the help from the Bishops company to get him therapy, and the special pre-school, the acceptance to Bloorview, even the epilepsy diagnosis that seemed so disheartening at the time... How can I not sit and praise God for every thing that has gotten us to this point? How can I not feel humbled...

That's it... just had to write to tell you all (who have faithfully followed and prayed) how incredible God is, how amazing my son is, and how proud I am of him, and ... well... just to share this awesome answer to literally years of prayers!


May 10, 2015

not always a Hallmark card

Mothers day brings so many emotions to the table... it can be a joyous day but it can also be a day filled with bitter disappointment, hurt, searing pain and grief. Mothers day is not always the pretty Hallmark holiday that is plastered on every card or shown for weeks on Facebook videos.

I think of the mothers who lost their children, the mothers who miscarried, the mothers whose child died before they got a chance to take a first breath. I think of the sons and daughters who lost their mothers, who grieve what is now a memory. I think of the men and women whose mothers failed them and hurt them. I think of the women who want nothing more than to be mothers but struggle with infertility or haven't yet met someone to share that journey with. I think of all these things and while I celebrate my own mother and my own sons I ache for each of these as well.

This year, acknowledge the pain that often lies in the hearts of the women you greet today. See the struggle in their eyes, show compassion. Hug the women in your life who you know have loved and lost, who dreamed but didn't conceive, who hoped but didn't hold their child, who have known the pain that comes from a broken mother of her own. Hold them, acknowledge them, stand beside them and grieve with them.

Mothers day isn't all tulips and sunshine...


May 4, 2015

Decade 4

Tonight is the last night of my thirties...

The last decade has been absolutely amazing... I remember when I turned 30, I was living in Austria and I didn't know it then but my life was about to take a 180. It was a tumultuous turn, a hard turn, a scary turn, but when I look back on that turn now and see where that new road lead me I can say with total assurance that it was the best thing that ever happened to me. I returned home to Canada shortly within 6 months of my thirtieth birthday, not so much on a chariot of triumph either. It was a leap of faith for sure, but it felt like a let down at the same time. I had never intended to come back to Canada.

Funny how we plan one way and it turns out totally different. I have learned that nothing is set in stone and I am totally okay with that because I have also learned that my plans aren't nearly as great as the plans God has for me.

My thirties brought me Tim,  then the boys and together they were the greatest blessings I have had in life. These men have taught me so much about myself and God; they have taught me about faith, commitment, relationship, forgiveness, mercy, peace, joy and laughter. They have, together, made me a better person, and together they have shown me that the value of the cross lies in the death of our old selves and the birth of our new creation. It has been an exciting ten years.

Saying all that, one would think it would be hard to let go of my best years of life so far... but I have learned a few things that make this next step an even more exciting time. Turning 40 is an absolute joy. I am so excited about what lies ahead! Gone is the girl who didn't know who she was, the girl who was self conscious and cared too much about what others thought of her. In her place I have discovered a woman who knows who she is. Life hasn't turned out how I thought it would when I was in my twenties... but as it happens... that is a great thing! Age is not something to be ashamed of, age is wisdom, it's experience, it's self confidence and peace and beauty and joy and restoration and maturity. Age brings lines and greys and roundness... but all of that is just the outer shell of the person inside; the woman who looks in the mirror and sees in her mind the good times that brought the laughter that gave her the lines, the tears and stress and the tough lessons that brought those greys out of hiding, the roundness that came from enjoying meals with her family and date nights with her best friend and partner in life.  I look at my Mom and I see that all of this is truth. Beauty isn't what's outside, it's not what size you wear or cup size you are, it's not in the curliness or straightness of your hair, it's not the clothes you wear or the shape of the hips that you squeeze into those jeans... it's who you are. It's the compassion you show, the kindness you give, the wisdom you have shared, the peace you bring, it's the way you tackle life or the way you stand back up when you fall, it's the way you share and respect those around you and it's the way you love. As an aging woman I strive for those things, and if I get a bit round or grey ... I am okay with that. (Though I will probably buy some dye for a bit... Im still vain enough for that). :)

For the women I know who have gone before me, who are now sitting where I hope to one day be. Thank you for your wisdom. Thank you for being leaders in how we as women should view ourselves, thank you for the comfort and hope you have offered and for the beauty that shines through you.

For those younger... don't let it take 40 years to learn these lessons. Embrace it now. God made you exactly as you are, and you are beautiful. It's not new but I will say it again, beauty fades but character lasts. Put the added effort into your inner beauty that you put into your outer beauty and it will never fade.