December 31, 2013
Yet, even as I write this, I think back to each and every stress, each and every moment of uncertainty or trial, I can at the same time see each face of the people who have stood beside us through out this past year. I see the new friends at the new church who have welcomed us into their home and gathered us up in our times of fear and worry, whose support literally moved us to tears on a number of occasions. I see the faces of old friends who gathered behind us and kept us moving forward when all we wanted to do was stop and hide. I see the faces of doctors and therapists who were working hard to heal our son. I see Josh, I see Kaleb and I see them smiling, not because of what they have been through but because of where we are now.
Leaving 2013 behind is a joy, because once again we have survived and flourished. We have grown stronger, our relationships are deeper, our trust and faith has been stretched and not snapped. We have overcome great odds and still we laugh, still we smile. I started this year knowing that 2013 could be tough, had I known then what I know now I may not have been able to cope; however, life tends to take you through things one step at a time and before you know what's happened you have scaled a mountain.
I won't sit and tell you that I have any great insight for 2014, I have no idea what will unfold this year. I could be great, it could be tough. All I can do, all anyone can do really, is take a step, and then another, and when we reach our destination we can look and see the beauty of the journey.
In the last hours of 2013 I can sit here, safely behind my computer and say that the journey was stunning, in all the impossible moments there was a profound beauty and love that I don't want to forget. I don't want to repeat it, I don't want to sit and remember the pain, but I would happily sit and remember all of those faces, all that love, all that support.
It's been quite a year...
I wish you all a blessed journey into 2014, I wish you joy, and a glimpse of the beauty in your journey. Happy New Year!
December 13, 2013
This little guy is a deep introspective little man. Last Thursday we 'celebrated' the four month anniversary of Josh being released for sick kids. He's had many ups and downs since then, though happily more ups than downs.
Tonight he came to be for a snuggle (increasingly rare as he ages).. He sat in my lap and I hugged him, I whispered that I love him, then I said ' buddy, you are awesome. Normally this garners smiles... Today he didn't act as I expected. Today he looked up at me and said ' no Mummy. I'm just different'
It's entirely possible to actually have a million thoughts in just a few short breaths. It happened to me tonight. Every time think it's further in his mind, hoping he's forgetting and the ugly truth comes back to taunt us.
'Why do you say that Josh?
He looks down at his hands and slowly lifts them, placing the carefully over his heart. 'My heart is different'.
These are the moments in life, the ones where words count more than ever.
On December 2nd I posted a video with many photos of CHD survivors . I pulled the video up on the screen and we watched it, frame by frame, faces of survivors filled the screen. Josh's eyes watches intently, watching in the silent way he has, just taking it all in. Each face we saw I pointed to and whispered 'he has a heart like yours, or, she has a heart like yours. How can you be different when there are so many just like you. You are not different, you are special! The video ended and Josh looked me, he eyes were misty but I could see the doubt was leaving his eyes... I made him say it 'I am special!
We hugged for a bit while we talked about his awesome, miraculous heart.then I had to ask 'did someone tell you that you are different Josh?'
His answer... 'No. I just know. My heart gets tired sometimes Mummy'
Oh how I pray these are just words... Words uses to describe a year of pain and illness and not present day realities. Hearing these words send chills down my back, fear fluttering through my stomach.
I wouldn't change one second of the time we've had with our son, not one second. However I feel I could write a book on the ache that the doctors can't warn you about because though they see it countless times in a day they can't possibly know what it's like to live with this on a day to day basis, in a child you would yourself die for; they don't know about the fight that continues day in and day out.
For now, he's safely in bed and this information he's given me will tucked in a private 'pain spot' in my brain. But my guard is up, I'm on watch duty now.
Living with a congenital heart defect has the power to consume your life. Were it not for my faith, I think my strength would have failed long before now.
My prayer will be that this tired heart he speaks of is in the past tense, but if it's not I pray we have the wisdom to discern.
December 11, 2013
Yesterday was a good day, I was asked to attend an award ceremony at Joshua's school to witness him receive an award for Responsibility. He was one of 48 students who received an award and I couldn't have been prouder of him. His teacher and principal were the ones who gave him the award and their words were special. Josh is eager to learn, he takes responsibility for his belongings, his school work and his attitude within the classroom. He is always kind and fun to be around and when given something to work on he goes at it full steam ahead. (these were his teachers words to me before the award was given, and I am glad she told me because as I watched through teary eyes I have to admit I didn't hear anything they said, I was too busy watching him). The award was a surprise for Josh, he had no idea he was even nominated and you can see from the picture above that he was very proud of himself. During the ceremony there was a little girl (probably about grade 2) who WALKED to the podium for after teaching herself to walk again. Chills run down my spine again as I review it in my mind. Listening to the crowd cheering, seeing her smile as she slowly walked up to receive an award for courage, it's a memory I will remember for the rest of my life.
In other news... Last June we had an eye clinic appointment and the doctor told us that Josh would most likely need a second eye surgery. She decided to put it off and allow us to deal first with his heart and then make decisions about his eyes. Before the heart surgery she asked for permission to go in and have a good look at his eyes while he was sedated since he wasn't very co-operative when he was awake. We agreed. Today we had the follow up appointment and I have to admit I was geared up to hear that we would need more surgery... HOWEVER... it turns out that he will NOT need anymore eye surgery. This is GREAT news! The not great news is that his eye problems are not actually 'eye' problems but rather a result of the stroke and nothing can be done. His eyes do not work 'together' but it shouldn't impact his learning, it's not affecting his sight and it seems to not be bothering him that much. So, other than annual check ups we are cleared!!
We take hits... but sometimes the hits are home runs! This week, Josh is hitting out the park!
December 5, 2013
This little man started JK this year. We have moved into a new area, and he's in his first few months of a long school career. It's been a very rough start and I won't lie to you; I have deep concerns about his safety and well being and the future of his education. Kaleb is like me in many ways, and because of that I can see how vital it is for him to have a positive beginning to a school career... too many things have happened to this little boy for me to list here, and most of them are confidencial in nature so I can't be specific. However, it's made us (Tim and I) question what's best for Kaleb. I am writing this post today to ask you all to pray for us. We need to hear God's direction in this, as far as where Kaleb is safest and where he should be. I won't lie and say I am not worried... I don't know the best 'next step' for Kaleb. Please, pray for us, for wisdom, discernment and guidence and a clear path as we slog through this process. Pray for little Kaleb too... he's fairly unaware of things for now and that's the positive side of all of this but every day I leave him and I am filled with anxiety for his welfare (now and in the future).
Thank you... You have all been so incredibly faithful to our family as we faced hard times before. You prayed Josh through some very hard times and I have total faith that you will now pray for his little brother.
December 2, 2013
I have had the absolute honour of creating a video for the Canadian Congenital Heart Alliance to help raise awareness for Congenital Heart Defects. The video, is filled with as many survivors as I could fit into the short video. The response was pretty awesome and reading each story, particularly the stories of the adults gave me so much hope for the future of CHD and the survivors who bare the scars.
Please, check out cchaforlife.org to find out how you can help!
Kids. They are those amazing little creatures that awe us at every turn with their sweet hugs, powerful love and amazing cuteness and then seconds later make you wonder what the heck was wrong with you when you chose to have kids?!
The boys, on occasion declare a truce that lasts long enough to make you believe all is well but what is actually going on is a hesitant allied force against a larger evil (Mummy) which lasts as long as it takes to win and then one of them will break the treaty and once again declare war on the other. Peace deals brokered by those two are acts of war against me. The only time one of them makes a pact with me is when it is against their brother. The endless 'Mummy, Kaleb hit me" or "Mummy, Josh won't play with me" or "Mummy, he threw a ____ (name anything and it's been thrown in this house) at me." Some nights I can hear those calls repeating in my dreams like that song you can't stop singing... You know the one right?!
The battle of the bunks... that's a story in itself. The bottom bunk has now become a place of envy and every night there is a war to see who gets to sleep there. One night Josh got 'smart' and made sleeping on the floor seem like a great idea to Kaleb so they both made up little beds on the floor and then, once Kaleb had fallen asleep Josh quickly moved to the bottom bunk. At two in the morning Kaleb woke up, discovered Josh's trickery and moved to the bottom bunk as well, thus waking Josh, and another battle ensued.
There is of course moments of togetherness that have nothing to do with waging war on Tim or I...
Just this morning I watched Josh try to leave the house in Kaleb's pants (2 sizes too small). The little legs ended at his calf, the button barely did up, and I still can't figure out how he managed to pull them up they were so tight on his legs. Alternatively Kaleb had Josh's pants on, he walked through the house looking like a 13 year old whose pants are sitting under his bum, the legs so long he was tripping around the house. They were so pleased with themselves for picking out their own outfits that it was hard to ask them to change.
Occasionally Kaleb will have a moment of 'kindness' and ask for a cookie for Josh (knowing of course that he himself will get one if Josh gets one). One day I gave him the cookie for Josh and then moved about the kitchen as if I was done, it wasn't long before Kaleb was tugging my leg and saying 'but what about my cookie Mummy?' They may be small but I have learned through experience that they are much smarter than we give them credit for. Whoever said kids are born sinless never had kids.
It's funny to me, watching them think up ways to get what they want, or to trick their brother into something. You can actually see the wheels turning if you watch closely enough. Try it. Come over anytime you want (to babysit while I head to the spa for an hour) and see for yourself. These little people who that we gave birth too... they are masters at their game and worth of any opponent!
All that being said though. They are also the first to fight tooth and nail for me if Tim dares to tickle me, Kaleb particularly will launch at Tim, growly face and all, to defend his Mummy. If they see me sad, they are the first to come for a hug or snuggle and of course, to try and woo me back to my normal state with funny faces and giant whoops of laughter. If Josh is hurt (by someone other than Kaleb) then it's Kaleb who is first to ask if he's okay, the first to kiss the ouchie better, the first to say 'don't hurt my brother'. If someone dares take something from Kaleb (other than Josh) then it's Josh who is first to dive in and get it back for his brother. Already at this young age I can see the men that we are raising and I have to admit. I am so proud of them. For all the angst of daily life with two young boys I wouldn't trade a second of it. Wars and peace deals, whining and crying, fights and chaos and all!