beautifully normal

An interesting thing happened today. Normalcy. For the past few days I couldn't see past this new mountain to see the horizon. I used to live in the mountains in Austria and every once and a while I would need to escape to breathe, I would get claustrophobic if I couldn't see the horizon. That is how I felt this week, like I was trapped, couldn't breathe and I began to panic. Today, I woke up and I found normalcy. What a beautiful thing 'normal' is. I looked around my house with dishes everywhere, toys from one end of the room to the other, the boys on the floor wrestling, the coffee waiting for me and I had to acknowledge, nothing has changed. Josh is the same kid he was a few days ago, and we will get the help we need. A doctor might not 'have this' but God does. He is the best neurologist and speech pathologist in the world. He 'has this'.

As I watched Joshua this morning I saw him do something that every little boy for at least the last three or four generations have been doing. He tied a red blanket around his neck and claimed his new name... 'Superman!'. I was not been allowed to call him anything but 'Superman!'... and I found that I wanted nothing better than to call him that. He is MY superman... both my guys are.

No, nothing here has really changed at all. He is still the warm, sweet, smart, and funny little guy he's always been, he still beats on his brother and tries my patience. He still says I am his best friend, and last night when I told him I loved him he said 'love back'. God who had  a plan on before Monday, still has a plan. The therapy we needed before this week, we still need.

The only thing that has really changed, is that now we are in a better place to find that therapy. As a child suffering delays due to brain injury he is now classified differently and we have hope, hope for a treatment that works, hope for a shorter wait list in therapy. The rest? God has it. I just need to keep reminding myself of that. Every time I look up and see that mountain I need to ask God to lift me up so that I can see a horizon and breathe again.

I have received so many words of encouragement from so many of you. It means so much to me, and it's carried me while I digested this information and had my pity party. Thank you.

?

Sometimes, bad theology can seriously mess with a person's head... even when they are fully aware that it's bad theology. People keep telling me that God knew I would be the right mother for Josh, so He entrusted Josh to our keeping. The reality is that God doesn't have a bunch of kids up there, some messed up and others 'normal' (I use that term 'normal' very loosely as I don't believe Josh or any child with special needs is 'abnormal'...) Anyway, God doesn't have that going on up there, he's not sitting there going 'okay, you are strong enough, you can cope, you can handle this, I will give you the kid with a heart defect, or the kid with brain injury or... (insert any other issue a child might have in this spot') God doesn't say 'you are strong enough' he says 'I will give you the strength you need'. However, in the dark of night when the worries invade my sleep and I can't see a way out... that's when I think maybe God made a mistake by giving Josh to me. I just don't think I am up to this task some days.

I know that there is help out there, that I just need to dig deeper to find the resources available, the funding that must be there... but the road seems so long sometimes. I see it stretching out before me, all the appointments, the meetings, the paper work, the endless emails, phone calls, trips around the city, the days out of school, the time not spent with Kaleb, the babysitting for him and let's not forget the disappointments and all I want to do is crawl back into bed and wish it all away. I can't help but ask myself and God how we got here? Why? Why did this happen to him?

There are days of course when I am not feeling sorry for Josh and myself, the days when he is clearly improving, days when he is laughing and playing and it seems like absolutely nothing can diminish the light he brings to our lives. Those are the days that I can see his strides forward, the days that I can see the trees in the forest, the days when there are no monsters waiting behind the trees, waiting to jump out and snatch us into their clutches. They are good days, they are for the most part the daily outlook in this home, they are the 'norm'. It's not like I sit here every day thinking that our life sucks, or that it's hopeless. Our life doesn't suck, we have two beautiful children, a happy marriage, a home filled with laughter, shrieks and giggles and gains every day in development. 

It is the days when the light is hiding behind clouds, when I see Josh struggle, when I hear disappointing news, or as is the case this week, when I see a mountain in front of us and I can't see how I can possibly gather the strength necessary to climb it, let alone carry Josh up it. Those are the days that the questions come, the days that the doubts set in, the days that I just want to hide. They are the days that I think to myself 'I am failing him'. They are the days that I see my selfish side coming out, the side that says 'I don't want this', or 'I didn't ask for this' or even 'this is not how it's supposed to be'.

Do I really believe that God gave me Josh because he thought I could cope with it... not at all, do I honestly believe he made a mistake? Not for even a second. Can I cope with it? Only with His strength. Will we get through this? Only in His power. God brought this little man into our lives as a gift, a treasure that we find pure joy in, I don't know what life would be like if he were not in our family, he and his little brother. I don't know how I got along in life before them. The question really is, do I have the courage to do this, do I have the courage that it will take to just stand up, face it, fight back and do everything possible to help Josh win. Can I be patient enough to wait on God? Can I let Him lead us? Can I let go of the control and allow God to take the reigns?

What is the next step? Where do we go from here?

With Josh's heart we have a whole team of the best doctors out there, they are there to say to me 'we have this'. They look at his heart and they say 'we'll do this and if that doesn't work we will try this... etc etc. His brain is a mystery to us. A brain injury can't just be fixed. It takes time, patience and faith. No one has the answers I am looking for.

Last night before bed, the only thing I could think of to do was to touch is little head and pray for healing. It's all we have left when it comes to this problem. No one can 'go in and fix it'. Therapy will help him, that we know. How much will it help? That is the guessing game that I am struggling with this week.

Heart of my heart

I am in over my head

I am afraid to breathe

trying to help you

not knowing what you need.

Heart of my heart

I see you smile

what I want is to hear you;

your thoughts

your hopes, your dreams.

Heart of my heart 

I want to take your pain,

I want to walk this road for you

so you never need to again.

I am afraid to fail,

afraid to let you down.

Standing at the door of your future

and I can't find the key.

Heart of my heart

I want to hear your voice

tell me about your friends

 or share with me a silly story.

I can't see how to help you

every turn is one more

in a maze that I am lost in

I am scared, alone.

Heart of my heart,

I want you to tell me about your day, 

ask me a question,

I will hear anything you want to say.

My walls are caving in,

the darkness holds no light

I can't stand the thought

of failing you in this fight.

L

Unexpected

I am sitting in a waiting room, in the old halls of Sick Kids. Josh is down the hall being tested for all sorts of things, all of them falling under the heading 'neuropsychology'. His psychologist spent the morning taking with me, and for the first time i have been given a reason for Joshua's speech delay, the mystery is over, the guessing game is finally done and finally I have something concrete to blame. This brings a freedom that I cannot explain in words, but I will tell you that the relief of finally knowing the root cause of his delay caused me to cry. She didn't offer me a solution, there is no magical cure, so I am not really sure why the knowing helps so much, but for now it gives me something I can grasp, something to blame, something to fight.

Josh's stroke was on his left side. Most of language is centered in the left side of the brain up to and including sentence structure. Vocabulary however can come from both sides of the brain. According to the doctor it makes complete sense that Josh is struggling in the areas that he is struggling with.

The bigger question of overall development won't be answered today, I will have to wait for the results. Intense speech therapy recommended and hopefully a meeting with a social worker to follow up on how to find the funding for it.

I came today anxious that she would only tell me all that is wrong with my son, I never dreamed I would leave with hope.

God is good... I still don't know when or if Josh will ever talk and communicate normally. No one can answer that for me, but I know what I am fighting now. I know what I am praying against and the statistics are on Josh's side. Our day is not over, will be here all day, I will likely hear things I don't like, things that hurt, things that frustrate. However more important than anything else is that I am also leaving with hope and with someone here who I can call on for help.

Not at all what I went into today expecting!

Love in Action

I was asked today to think about a moment when love in action changed my life. I didn't have to think hard to find a response, though there has been many in my life, there are a few from recent times that stand out in my memory, that cause me to feel warm and squishy inside and think fondly on the most horrific time in my life to date.

Yes, I am talking again about Josh's surgeries.

At the time of Josh's second surgery our church community rallied around us in such love and support that I felt for the first time that I was a part of a community there, and not just a person sitting in the pew. They have been faithful prayer partners in our journey, they ask every week how the boys are doing, and they are a constant source of encouragement in the harder times.

During Josh's second surgery a group of them got together and got Tim and I a hotel room for the time that Josh was in hospital, allowing Tim to stay close at hand during the nights that I was in hospital, so that should the need arise I could call him and he'd be there in minutes. It also gave me a chance to make the 2 minute walk over to the hotel in the morning when Tim had come to relieve me from bedside and get a few much needed hours of sleep, a shower and a quiet moment away from the CCCU and the machines that beep and hum to the rhythm of Josh's heart.

These same people came together for the same cause during the third surgery, once again speaking love in our lives with action, not just words. Others in the church set up a day of prayer and fasting, and then sent the word to friends and relatives world wide, so that before we knew what was happening we had numbers in the thousands praying for Joshua, for us, and for his doctors. They brought food, they sent flowers, they sent activities for Josh to do in bed. One created a book, readying him for the journey he was about to embark on, a picture book that allowed us to prepare him mentally and emotionally for the rough days ahead of him. They came to visit us, they emailed, they used facebook to communicate their love and support of Josh, and us as his family. They made a difference in our lives, one that many of them don't even realize they did.

To say to you that love is something you feel, is true, but the truth in love is actually more about the actions. It's not always easy to love, sometimes love requires more than just a pat on the back, sometimes it requires our most precious commodity. Time.

So, when I think on love in action I am reminded of what a witness this group of fellow travelers have been in our lives, and in the lives of all those who have heard about their acts of selfless love.What better witness can there be, than people loving one another by doing what maybe doesn't 'need' to be done, but just something that will make the journey easier for someone else?

How many times has someone made the time make a difference in your life? How many times have I taken the time to make a difference in the life of someone else? Love, without action, is not truly love. My hope, is that one day I can speak into the life of someone through love in action just as these beautiful people at St. Paul's have spoken into ours.

Never say never!

I know a woman, who has three kids, one born with an affliction that she was told would mean he would never talk, never be potty trained or be able to live alone. He would always need help. That same young man just graduated with honors from a french immersion school, and has received scholarships to two Universities. He has the world by the tail, he is heading off to be an engineer! This success didn't come without cost. The mother has worked tirelessly with her son, she has struggled, fought for him, taught him, and his success goes to her as well.

When I heard this story, (just this past month), my heart filled with renewed hope. If he can do it, if this mother can do it, then why can't I? Why can't I be the kind of mother who works tirelessly to teach, help and fight for her son? Why can't Josh learn to talk properly? Why can't Josh one day have the world at his feet too? Who says he can't be anything he wants to be? (Even maybe one day an athlete?). Did you know that Jonas Gustavvson of the Toronto Maples Leafs is a CHD patient? Josh might just one day bring that Stanley Cup home for me after all! :)

What is worth having or acheiving is worth fighting for, worth working for. I want so much for Josh. I want him to know no bounds. I want him to talk with no struggles, I want him to play without fatigue, I want him to do all the things that kids his age can do. I believe he wants that too. So, with sword in hand, with armor on, I continue the fight. Like I said, it's worth the work, worth the fight. He is worth the work and worth the fight. I look forward to the day I stand up with tears in my eyes and smile on my face and cheer for him as he takes his diploma in hand and marches off to his future!

Nothing is impossible.

My Facebook status yesterday read: When they tell you it's impossible... when they say it will never happen... when they say 'give up'... STAND UP and fight back! It's never impossible and it CAN happen! You are just the first to do it!

sweet & sour

This morning... before I had consumed my first coffee my youngest child who is in the throws of being two decided to have a monumental melt down. This is not a new occurrence in our home these days, in fact for the last few weeks he has stepped it up a notch and the decibel levels can be heard through the neighborhood and probably throughout  the GTA. In fact, just this morning my neighbor called Kaleb his alarm clock... just shy of embarrassing! His screaming is deafening, and he is not easily coddled... he gets so angry that he honestly looks like he might just explode! Yes, this is the child I have often written about as being 'my sweet' Kaleb. I have sat for hours after a tantrum trying to figure out what happened to my little sweet child, have I made some horrible mistake as a parent? Is being 2 so hard that he just can't bare it any longer? In truth, I think I am just suffering shell shock. I sit and try to think back to Josh's two year old stage... and then I remember, the tantrums that went on and on, day after day, week after week, seemingly without end and I catch a glimmer of hope. Josh still has the occasional meltdown, but all in all he is much more pleasant to be around these days. When did it change? I can't tell you, it just melted away and like the pain of suffering the days of a newborns cries it is all but forgotten unless you sit down and try to remember. The difference between the boys is language really, Josh would scream and cry but no words were offered. Kaleb will scream NO NO NO in anger and stomp his feet or throw his fists, or a toy, or a shoe, or a ... well, insert here anything that can be used as a projectile.

Then someone shared with me an article. This came after I posted on facebook about his current tantrum. Turns out that this is normal. :) The advice... leave the child alone. Don't meet anger with anger, don't coddle, don't appease. Just ignore. Then, when the child calms down a little bit, go to them and give them some comfort. So, I will do what the article says and let you know how it works... in the mean time I miss my sweet boy. I miss the giggles, the child who used to do anything to make us giggle.

I welcome any and all comments on how you handled this stage... or at the very least... comments on how to survive with sanity in tact!

False Oasis

I did a book review not so long ago about a woman with 5 boys! (Still shocking to me all these months later)... anyway, the point is that in the very beginning of the book, in fact it was the introduction of the book, the woman talks about her garden. More to the point she talks about her backyard that once was a garden. She talks about the holes, the dirt, the toys scattered from one corner of the 'garden' to the other. I read it and giggled, part of me understanding, the other part simply taking joy in the fact that I am not alone.

This past weekend I have been a slave to my garden, thursday I spent the entire day weeding, back breaking work I assure you! I pulled everything I could see, leaving a beautiful garden ready for new plants and some tender loving care for the older ones. I made the trek to Home Depot garden centre with both boys (one hungry and the other who was more than ready for his nap). We got in the cart, 'drove' the cart through the rows of plants, the warm sun our our shoulders, the sweet smell of plants and earth surrounding us, water trickling from the freshly watered hanging pots. The boys were in awe of the flowers for all of two minutes. It was shortly after I picked out the first of many new plants that they got bored, and began to use the new spade and rake as weapons of battle, pretending I suppose that they were in the jungle engaged in mortal combat. By the time I was ready to check out the sales clerk, who had watched my struggle, and flinched a few times when the offending spade got smacked on the head of a brother, kindly asked if I would need help getting things to the car. I of course agreed to any and all assistance and once the boys were safely strapped in the car I sat in the drivers seat and rested my head on the wheel. I have worked many jobs in my life, and none have caused this much embarrassment or anxiety or stress... that says a lot to someone who managed a retail store for a number of years!

The drive home was uneventful, nap time went smoothly, planting the new plants went smoothly. This of course was an act of God and not to be repeated in my near future but I will take what I can get and be thankful for it. I had created a wonderful space for Tim and I and I have given the boys a place for thier little mini sized pool, a spot in the garden for them to play in the dirt and they had ample trucks and digging tools to play with. On Thursday night, though sore and tired I felt that I had accomplished something! It looked good!

Friday, Tim and I bought new lawn chairs to enjoy our newly cleaned up and de-weeded garden. That night we had a frozen margarita and lay back to enjoy the warm spring night.

Saturday I tackled the front garden with much the same success... and then it went horribly wrong...

As I was finishing the front I went to the back yard to get the hose to water my new plants. I opened the gate and to my horror I found both boys, both completely covered from head to little foot in dirt (with the help of the other brother of course). My patio stones were black with soil, and my potted annuals had lost their homes and were lying as casualties of war on the hot stone. The plastic trays that they were bought in, were 'hats' for the iris's, the trucks were driving through my new plants, and both boys were grinning from ear to ear. I didn't say anything, I couldn't. What do you say? My mother used to tell my sister and I that if we couldn't say anything nice then we shouldn't say anything at all... so I walked into the house and looked at Tim.

'Do you know what your son's have done?' I asked. It was enough. He handled it sufficiently. Sunday, dirt again was flying, though my flowers (re-planted in their new homes) seemed to fair the battle of the day. Last night as I sat on my new lawn chair, frozen drink at my side, and stared out at what had been my oasis, I saw dirt. EVERYWHERE. Toys, from one corner of the 'garden' to the other. I saw spotty grass from where either the boys or the dog were digging, and I sighed. The woman from that book... she was right. My hopes of a beautiful, well kept, garden are dashed until the boys are teenagers.

I love boys, I wouldn't trade them. Do I miss the chance to buy a sweet little dress when I see it? Do I wish it was sweet little girls playing with dolls and whispering secrets in the night instead of boys using anything available as weapons, driving trucks into the dog, jumping on each other, hitting each other and finding farts the funniest things in the world... :) Not a chance. They are boys and every day is a learning curve for me, I do my best to bring beauty to our home, any estrogen is welcome here, but at the end of the day, when it's all said and done, there are things that having boys means I won't have, and for the moment it means a garden with more dirt than flowers, more holes than grass, more trucks than beauty. It also means a quiet house. Perhaps the key is to create my oasis in here? :)

Happy Long weekend everyone!

L

life lesson brought to you by the Haughton boys...

One of the things about kids, and I have talked about this before, is how you can look at them, and see how God looks at us (even if it's only a limited view by comparison). While at the beach I was out in the water with Josh, the waves were big and Josh was hanging on to be for dear life (albeit with a huge smile on his face). Grant and his son Hayden were also swimming together in much the same manner as Josh and I. I heard Grant say something that I had been saying to Josh numerous times, 'I've got you, I won't let you go, trust me'. Still, both boys clung to our necks, neither trusting fully that they were safe. It struck me that we are like this, or at least I am like this. I have the maker of the universe holding me up above the water, and I am clinging to his neck and he is whispering to me 'I've got you, I won't let you go, trust me'. Instead of letting go I am so scared of getting in over my head that I cling tighter.

Kaleb, for the first four days of our stay in Sanibel wouldn't go near the water, the waves were just too big, and even when in my arms he didn't want me to go in the water. I kept telling him to trust me, that it would be fun, but he adamantly refused. Then, one day the waves were calmer, and the water was warm. Kaleb allowed me to take him in, and what he discovered was that he loved the water! He sat in the water and with a huge smile announced that he was swimming. If only he had trusted me in the previous days, his fun would have been extended. I wonder how much I too am missing because I am too afraid to let go, and believe Him when he tells me to trust him enough to follow where I am afraid to go?

At the pool in our resort Josh had a life jacket on, I held his hands and tried to get him to slowly let go and trust me, it took a few tries but finally he did it. He kicked his legs like I taught him and to his surprise he was able to stay above water and work his way around the pool on his own. He was so proud of himself and wanted to criss-cross the pool a thousand times before finally he had worn himself out.

There always seems to be a theme with the life lessons I am learning these days... trust. Trust that he has me, that he won't let me go, that I won't drown if I allow him to take me where I am scared to go and that it might even be fun.

Fun Times for the Carihautons!

For two weeks now I have enjoyed the absolute blessing of watching my two little boys discover the fun and wonder and magic of the ocean, and more to the point Disney! It began with a flight (which Kaleb slept entirely through) to Sanibel Island where we met up with our good friends and their two little boys. Our first night there we dressed the boys for the beach and dragged them down to see the Ocean. Both had seen it before, Josh played in the waves of Ocean City a few summers ago, and Kaleb played in the sand there, however in two children that young, the memories are long since forgotten so the first sight of the waves, the horizon and the sand that stretched for miles was something that brought giggles of delight and eyes the size of saucers. For those of you that have heard of Sanibel you know that it's the worlds best shelling beach, and Kaleb and I spent time together gathering pretty shells to bring home. During the week there we saw dolphins, one who swam about 20 feet from shore, all kinds of birds, shells of all shapes and sizes, fish, a sea slug, manitee, turtles, parrots, and a hundred other cool things! We made sand castles, jumped waves, enjoyed the sandbar during the calm and we caught conch shells and sand dollars at low tide. I celebrated my birthday during this holiday and discovered that I am LOVING aging! There is freedom in growing older, which is an entirely different post I suppose. That week in Sanibel offered peace, rest and a total getaway from the life we live here. It was everything a beach holiday should be, even with the every day tantrums and fights that happen with little boys. It's funny how you can look back at even the bad moments of a two year old melting down, or a brotherly brawl and smile when it is surrounded by such beauty and rest.

The next big journey for us was a four hour drive to the land of Mickey and his friends. We arrived at our hotel (again, a hotel fit for another post given the enormity and beauty of the place). We stayed in a villa at the Animal Kingdom (made available by my wonderful Aunt and Uncle who are Disney Vacation club owners). It really looks like you stepped out of the car and entered Africa without the long flight. (a luxurious Africa that is). I think my favorite part of that first moment in our resort was the face of the bell boys when they saw the huge amounts of luggage that a group of 4 with 4 kids can bring with them, and just when they thought it was done... out came the car seats! It was brilliant! Our room, well... it was stunning. A two bedroom villa with a common room, kitchen and an incredible three bathrooms, one of which was the size of Kaleb's room! I think I could have spent the entire week just hanging out in that room and enjoying it's delights! Each room had a balcony, and each balcony faced the safari, with all kinds of animals walking past us. Giraffes greeting us in the morning was probably the coolest thing ever!

We started our time in downtown Disney, where we ate at the T-REX restaurant, reminiscent of the rainforest cafe but with all kinds of fun dinosaurs and mammoths,, made complete with a meteor shower every 20 minutes or so. The boys couldn't eat they were so excited. The next morning we made the journey to the Magic Kingdom, it was crazy fun but HOT, and Josh who was refusing to drink got dehydrated and listless, by the afternoon he was asleep in his stroller and refusing to wake up. A bit scary but after spraying water on him to wake him and giving him ice cream and finding an air conditioned restaurant he began to perk up. Day 2 of the Disney parks was spent at the Animal Kingdom, by far our favorite park! It began with breakfast with Mickey, Goofy and Daisy, where the kids were treated to hugs and fun and great food. In each Disney restaurant that we went to, the Chef came out personally to take Kaleb's order and make sure that he ate nothing that could endanger him or put him at risk. The level of comfort that brings is so wonderful and meeting the chef's was fun for all of us. We went on safari, saw Lions, Giraffes, Elephants, Ostriches, Hippo's, and a whole host of other crazy animals. The boys loved it! I loved it! At one point we saw a Komodo Dragon, everyone was so excited and pointing to it, and Kaleb climbed up on the little gate and pointed to the duck who was cohabiting in the same exhibit, he started screaming 'Duck'... 'Mummy, look, DUCK!'. He could have cared less about the amazing DRAGON right beside the duck which caused delight for us and the people around who heard him.

After riding Kaleb's favorite ride (a dinosaur thing ) he fell asleep and Tim and I took turns sitting with him in the shade while the other took Josh on the Kali River ride (a rapid ride that promises to get you wet - which we all did). Josh would sit in his seat, and laugh for the entire ride and when it ended he would say 'I want more', and so the next parent would step in for a second ride. I think in total that day Josh rode the rapids about 6 or 7 times. We saw a parade that day, complete with all the characters we love and Kaleb waved to each one but was especially excited to see Donald Duck!

Day three at the parks was spent at Hollywood studios, which was again hot and Josh had been up all night (suffering I think from over stimulation) so we didn't stay as long, but long enough to see Woody and Buzz and have our pictures taken with them (Woody even kissed me!) and of course we had to see McQueen and Mater! After a day there we went back to our resort and had dinner poolside (a really good dinner!). The boys played on the water slide and Josh did his first solo swim!! Watching him step out on his own in that way made me incredibly proud, but watching the pride on his face was something I can't quite describe. He was beaming!

The next morning, at 3:30 in the morning, our wake up call came, the trip to the airport began and though the boys all had a few meltdowns I was really impressed with how all four of them handled the long wait given the insane time! The flight was easy and the return to Canada smooth!

All in all this was a trip I will never forget. I will forget the tantrums (already have in many ways) and I will forget the sleepy, hot days, but I will never forget the look in the boys eyes or the knowing that once upon a time I too knew what it was like to walk into the Magic of Disney as a small child. It was a special holiday, one I have dreamed about since finding out I was pregnant with Josh, and in light of the last few years the rest was so welcome. We feel lighter, and really soul rested for the first time in a long time.

I want to take this opportunity to thank Jen Rogers, who is home with her Lord, for making this dream possible. I love you and miss you! I want to thank Doug and Judy for their help with the second half of our trip and the ability to stay in the best place ever while at Disney! I also want to thank the Carioni's for allowing us to spend a week in their beautiful home in Sanibel! You have a wonderful home and we enjoyed our time there immensely.

Last, and certainly not least I want to take a moment to thank the younger Carioni's (Grant and Janet) for being such wonderful, supportive and loving friends. You have been such a blessing to us this past five years (and to Tim for longer than that). You are our brother and sister of the heart. We love you!