February 1, 2016
Josh's take on life is that you can't ever let people be satisfied with the status quo... if people start to settle in and relax then it's time to shake things up; or at least that is what I think he thinks sometimes. Yesterday, after a fairly regular day of church, lunch, lego and bed he decided that he was going to spice things up.
At 10:00 He came crashing (literally crashing and stumbling) into our room, fell onto our bed and began telling us some strange things he was seeing in his room. He appeared drunk, and he was seeing things like lego figures walking through tunnels from his CD player, or a ghost tongue, and robots climbing on our bed. This went on for hours, I did some neuro tests that they have taught me to do and called the fellow on call for neurology. He spoke about feeling like he was floating and inquired as to when he would feel 'normal' again. At 4:00 he really began freaking out when he saw ants crawling all over his room and trying to rip down his posters. I brought him to Sick Kids and at about 5:00 he fell into a very deep sleep. Nothing we did would wake him; it was terrifying. At one point we had the ER doctors, the Neurology staff and fellow, the ICU doctors, a respiratory therapist and a whole contingent of nurses leaning over his bed trying to get him to wake up. They resorted to some painful tactics but still he wouldn't wake up. We were sent to CT scan to look for a brain bleed, he had an eye ultra sound to see if his optic nerve was enlarged and then he started to have the facial ticks seizures that he had after his stroke when he was a baby; which brought back all of those horrible scary moments.
(I am telling this in a very matter of fact, quickest way possible because I honestly can't think straight.)
At some point (no idea what time) they got through to him a little with pain, he didn't wake up per say but he was responsive to the pain which was a positive. At around 1:00 pm he woke up and was quite groggy, had unresponsive pupils and not a great recall on the events of the night/day but within the hour he was doing much better. We had an MRI and it's showing no new stroke sights and no brain bleeds which was the main concern for all involved. We have been admitted to the Neurology ward and have an EEG scheduled for tomorrow sometime; they are now assuming it's more seizure activity.
That is how Josh shakes things up when things are status quo.
For obvious reasons we are all exhausted and feel like we have been through a combat zone. We have had some pretty scary moments with Josh, that's not new, but seeing him lying unresponsive was enough to make me ill.
All that being said... He's now playing star wars WII and just finished his second pepperoni pizza. When I joke with him about this being a hotel he smiles and says its fun. Today, in a weak moment I started crying in the coffee line and looked up to see the chaplain we have known since our first night of knowing Josh, he wrapped a gentle hand on me and led me to Josh's room to pray with him. It's those stars in the dark night sky again, shining through when you are looking up.
I think sometimes Josh just likes to remind us that we are still alive, and he does it by giving our hearts a restart.
January 31, 2016
Tough comes to mind, tough and yet fragile. Strong, and gentle, kind and cheeky, worried and hopeful, a really complex array of contradictions that make up one amazing kid. I can't say little boy anyway, that dawned on me today... he's not so little these days. I won't reminisce this year, there has been enough looking back for me about this amazing child, he and I are looking forward, planning his future and dreaming about all the 'could be's' in his life. Right now his big plan is to rescue animals and help them get better, particularly the babies who've been left without a Mummy or Daddy to care for them. Every day it changes but there is always a consistent thread; his desire to help; his hope for a better future; a better planet, and a happier 'human'.
Each night when he says good night to God he makes sure to thank him, and each night he tries to thank him for different things. It ranges nightly. Once he thanked God that his brother had gone out that day and he didn't have to listen to him; another time he thanked him for having a brother. Sometimes he thanks him for nature, for the earth, for peace, for a home, for breath. His thankful heart, his enduring spirit, his witty sense of humour have served him well and promise to help him as the journey continues.
It has been 8 years since we welcomed this little man in our home, into our hearts. 8 years of lessons and love and hope and beauty and this amazing proof that God answers prayers. His quiet soul has been held in his makers hands and Josh's peaceful heart is the evidence of that encounter. I am so beyond excited to watch him grow another year older, another year taller, another year wiser...
Happy Birthday Joshua! I am so proud to know you, even more so to call you son. Daddy and I love you more than you can ever possibly imagine; we along with Kaper are so incredibly glad you are a part of our lives. Hugs to you Mr. Man... (I won't say kisses, I know how gross you find those) :D
January 26, 2016
Before I even start this post I need to place a disclaimer:
This is not a post about our church or anything to do with our church. I absolutely love the family of believers that we have joined and feel blessed to be a part of this amazing community.
This is a post that has been banging out about in my head for years and Ive never had the words to properly express how I feel about it. It's a post that I have worried would be taken offence too so I chose to remain silent... but today I have the words, and today I am not worried that it will cause offence because I think for the average person reading it you will see that it is simply a call to awareness, not a pity cry, not a fishing rod sent out for words of encouragement. It is simply a glimpse into life as a pastors wife; into a pastors life.
In the church, (again, this is the church in the greater terminology not one specific church), when a person is dealing with difficult times, when a person needs comfort or help or prayer or guidance; you turn to your pastor. You seek someone who can lead you forward and help you see things from a new and different perspective. It's a beautiful relationship really, one that I have called upon many times in the past when I was struggling with things, or when I needed hope that only a pastor can clearly offer (and offer in confidence). It's not simply turning to a friend, it's like seeking counselling and you know that this person loves you, loves God, and desires the best for you. You also have a deep trust and knowledge that this person (your pastor) will keep these deep and private thoughts to him/herself.
What I have come to realize in the last 9 years of marriage is that for a pastor, there is no pastor. A pastor and his family have no such person to turn too. We struggle along the best that we can and when things go wonky there is no objective, loving person to offer guidance and hope and direction or even just to offer up a prayer with us. Being a pastors family can be a lonely place and with no one there to really turn to is there any wonder that pastors burn out? It strikes me as sad that there is no appointed pastor to pastors or pastors wives. Even for the mundane things that sometimes just need an outsider to give clarity too... It grieves me. (This is not a pity post! I am fine, we are fine! I really want to stress that. It is simply as I said, a call to awareness of life with a pastor; because sometimes we aren't fine. Sometimes we need someone to pray with us, to offer advise, to give what Tim is used to giving. Objective, loving, confidential counsel from, not a friend, not a family member but a pastor.)
I am not sure that the general population fully realizes the loss until they find themselves in the situation and that is why I thought to share this today.
January 25, 2016
Sometimes healing is a quick and painless; a cut that stings but quickly clots and scabs. Sometimes though it is a festering wound, one that needs time and treatments; painful treatments. I once had a burn on my leg from a heating pad. When I woke in the morning my leg stung and had a red sore, I bandaged it and went about my day. That night I discovered it was blistered, I re-bandaged it and went to bed. A few days later the blister burst, again I put on a band aid. Days, in fact weeks went by and that leg got more and more sore, until finally putting any weight on it at all caused me pain. Finally in an attempt to figure out the problem I was forced to give in and see a doctor. He explained that the burn (though it had seemed small and inconspicuous at the time was in fact a third degree burn which had ulcerated on the bone. To heal I would need to take special pains to clean and care for the burn. Twice a day I had to peel off the white scab that was trying to form and wash it clean before I put another bandage on it. It was painful and quite honestly took a large amount of strength and courage (I prefer to ignore painful things if I am honest, and hope they somehow get better on their own). As the days wore on and I stuck to the twice a day cleaning I began to notice changes, the redness eased, walking became easier, and slowly I could begin to see the ulcer as it rose from my bone to the surface. When the ulcer finally surfaced my leg was able to scab up and heal properly.
Healing, emotionally sometimes feels much like that ulcerated burn. Sometimes peeling back the white scab of the raw infected wound is almost more than you can bare and yet it is the only way to really get health back. Old hurts, the ones that are caused by those who you love most, the ones that should be there for you when it matters most but aren't, those are the hurts that most often leave the ulcers on the bones; and they are they are the ones that we too often just bandage and leave alone to fester, those are the ones where infection thrives. Wounds like that take time, they hurt, healing comes at a cost.
I look at my leg now and I see only a scar, a reminder of that little life lesson I have learned along the way... Sometimes I just touch it and remember that there are times in life when you have to take the bandage off and deal with the wound; even if it's only between yourself and God, even if the person who wounded you isn't here to or is unwilling to say they are sorry, even if you have to quietly just say to God 'I choose to forgive them today, and I will have to do it again tomorrow.' As the days of saying those words move forward you one day wake up to realize that the ulcer has reached the surface and all that is left is the scar.
January 16, 2016
Here's the thing. It was a crappy week right? We are all tired and not feeling wonderful and we are running a range of emotions... BUT. We have it pretty good. I spent a few days feeling sorry for us, sorry for Josh, sorry for me, sorry for our family, but this morning I was walking the dog and I passed a man sleeping on the cold wet ground, I saw a woman who was sitting on the corner asking for change, and as I made the final turn to head home I saw a young man being arrested. As I finished the last bit of our walk I looked at our situation with new eyes.
Things could always be worse. In the grand scheme of things even the hardest things we have faced as a family are first world problems. Yes; even the stroke and heart problems. Here's why; we are situated in a city that houses the best children's hospital in the country, second in the world. Our teams of doctors are the top medical minds, the same minds that train doctors from all around the globe. We don't have to wait for someone to travel overseas to see us, we don't have to pray bombs don't destroy our hospital today, we don't have to worry about the impending bill that is inevitable in some countries. We don't need to worry if our insurance thinks a procedure is 'elective'.
Sometimes putting things in perspective allows you to see how great you have it, instead of thinking about the crap you are going through. That was me this morning. I woke up still tired, but as I walked past the man sleeping on the cold pavement I was reminded that I slept in a warm bed last night. I grumble A LOT if I don't have enough coffee; but as I passed the woman asking for change I realized that I had coffee in the house, I didn't need to ask people for the change it would require to go buy it. I thought about the health concerns, impending surgery, the fears and I remembered a night in the ICU with Josh when a doctor from the states was telling me that the procedure that had literally just saved Josh's life was actually considered 'elective' in the states and insurance would never have covered it there.
It (for me) is a daily struggle to take time to put things into the right perceptive, this week has been no different. Life sucks sometimes BUT it can always suck more so I need to be thankful for what I have, remember the things that could make this harder, count my blessings that my kids are safe, alive and have amazing care when they are not well.
January 15, 2016
As most of you know by now Josh had a stroke when he was a baby... 3 months old to be exact. At the time we had no idea of the implications of that little clot... not a clue as to how it would change all of our lives. After years of worry and fear and anxiety and hopelessness and in the last few years even joy and relief I can now say I know exactly what that means... and it terrifies me.
Yesterday I got a call from the school that Kaleb had a headache. I picked him up but the truth of the matter is he seemed fine to me. Then I got a call saying that Josh had a headache and tummy ache and could I come get him. I packed Kaper into the car and we went to get Josh. When I got there I learned that it wasn't just a headache. When the teacher looked at him he was flushed and his eyes were watering, she asked if he was okay but he found that he was unable to talk. The teacher called for assistance to get him to the office and the teacher that came to transport him reported that when he could finally speak he seems disoriented, confused and was repeating his words. His head hurt, and his tummy was upset. You can imagine that the first thing that came to mind was a stroke. I bundled him and Kaleb up and we went to Sick Kids where Tim's Mom met us and took Kaleb for me. After a long and quite frankly very scary wait we learned that Josh had a focal seizure in the sight of his old stroke (in the scar tissue). SO... while it sucks (this is a new type of seizure for him) it was NOT a stroke and for that I am so thankful!
This has been a week I would have preferred to skip, the boys have been tired, Ive been tired. Josh and I learned on Wednesday that he needs to have another his eye surgery (his right eye). He was visibly upset for good reason, it was a horrible surgery for him last time. He's also got fluid in his ear causing him trouble (they believe that it helped to cause the seizure). Kaleb has been showing signs of stress about Josh and if I am honest I am so tired I think I am running on fumes. It's just been that kind of week.
There's a lot going on, but through out I have been blessed by all the notes and emails. Thank you for your prayers and shows of concern.
January 9, 2016
It is a new year...
With new years I often stop to think about the past year and all the blessings that we have seen in our lives, and sometimes I thank God that the year is over and we can start fresh and hope for a better year to come. This new years I was sick... Ive been sick for over a month so I haven't really stopped long enough to dwell on the last year, or to explore the blessings.
This has been a year full of so many amazing things, and so many tough things as well. Looking back I realize that it seemed like 730 days, not 365. So much happened, good and bad, hard and easy, fun and hard, stressful and carefree. I don't want to dwell on the bad things and the blessings are too many to be numbered here so this post isn't going to list it all and remember; this year I start with the amazingness that is already happening in 2016!
On the eve of 2016 I was anxious. We were days away from another ECHO day and I was worried about what the outcome might be. Josh has had his pulmonary valve for a record amount of time now. He usually rejects it within a year or two. His last pulmonary valve was placed in August of 2013, we have surpassed HIS sell by date by 7 months and as we prepared for the ECHO I have to admit I wondered... 'what if?'. The night before the test Josh prayed for his own heart, something I have always done but this was the first time he did it himself. He prayed 'Dear Jesus, make my heart work good tomorrow. You have 13 hours and 5 minutes'. He added a thank you and an 'I like you' for good measure and went to sleep comfortable in the knowledge that only childlike faith and innocence can bring, that God would do as he had asked.
The ECHO went well, the ECG was a breeze, and we were greeted warmly in the cardiac clinic by out nurse and cardiologist. The smile on our doctors face was an instant relief. I have gotten to know her well in the last 8 years; I have seen her face crinkled in confusion, I have seen her brows knit in concentration, I have seen her worried frown as she reads the ECHO report, I have heard the changes in her voice as she relates the findings to us. I know the voice for a good report and I know the hushed tones of a bad report. I have even seen her tears, and I have seen the hopeless and helpless ache in her eyes. I can take a quick look at her and I know exactly what sort of report I will get. So, on Wednesday when she walked into our little office I knew. Today is a good day.
Things have not 'improved' BUT, things have not gotten any worse either. Everything looks basically the same. The pulmonary valve is only slightly more leaky but still well within a range that he can tolerate. His new tricuspid valve (one of the worst and best parts of 2015) is holding well with almost no leak and together the two valves seem to be keeping the right ventricle from getting any larger. Since April, when Josh got his new valve, this is the only time in his life that the right ventricle has not grown any larger, in fact for a little while after the replacement it even got a little smaller.
I don't know what this new year will bring, I have begun to finally see that life is not to examined on an annual basis but on a daily basis. Was today a good day? Did I do my best today? Have I taught these boys well today? Where do I need to make adjustments? Where can I learn? What needs to change? What was the best part? What was the worst? Where did I see the blessings? Where did I miss them? To wait a year to do these things means possibly missing out on more than I ever want to miss out on. Life is fluid, every day is a moving target and something to be learned from. On Wednesday when we walked out of the office after being told not to come back for 6 months (we usually get told to come back in three months so this is really exciting) Josh looked up at me and asked 'So, God did it right?!'
Yes. Yes, Josh, God did it. He always does, he always will. The question though, the hard part, is seeing it when it's shrouded in the mists of tears and pain. Sometimes we miss it, sometimes he doesn't do it the way we thought he would, sometimes he chooses to say no, sometimes he we have to close our eyes, hold our breath and hang on. Sometimes though, sometimes he does it exactly as we wanted, when we wanted, how we wanted, and the only thing to do is look up at him and smile and say thanks. (Then, breathe a sigh of relief).
I have no resolutions for this new year. I only have one for today. I resolve to be more present with these boys. I resolve to love these men in my life (Tim I include you first on this list) to the best of my ability today. I resolve to lay down in my bed tonight and look over my day and say 'thanks', even if today sucks. (Which it hasn't so far) and I resolve to look hard so that I don't miss the blessings. Tomorrow... Tomorrow I will have a new resolution, but it will be the same as today's.