Day 6

Day 6 of isolation: I feel like I might actually lose my mind.

Last week we got the new surgery date, and when I got the date I started to learn that many of the surgeries that were postponed were put off until late August or even September. One lady was saying that her son had been cancelled five times, three of those times were due to her son catching a cold. So here I sit, in a house all packed up and ready to move, limited things for the kids to do, most toys packed for the new house already (I had planned to be at the cottage but my Grandfather got sick so we had to leave). It's been a mad house!

Josh continues to have nightmares, and most nights I wake to find him crawling into my bed for snuggles. Kaleb, is bored out of his mind, causing him to tease and harass both Josh and I. These walls are closing in, every day they grow a little smaller, the air a little staler. I don't look forward to surgery, but I do anticipate the day when this is behind us and not before us. I look three or four weeks into our future and I see a glimmer of light at the end of this long and very dark tunnel. I see a day when I can take the kids on a play date without fearing a cold or flu. I see going to church again and being able to sit in the pew with other adults... I see well, you get the idea.

Today a few things happened... it's been one of those days that I spoke about earlier in the summer where things change by the hour.

This morning I got a call; surgery will be post-poned... I call Tim, my parents and Tim's parent's to sort out all the change in babysitting plans for Kaleb, I contact our friend who is organizing the hotel for us (with a number of amazing people) so that she could change the date of the booking... I cried a little - I won't lie. I am so exhausted, and I just want this behind us so to have a delay, even a short one, caused a momentary lapse in 'spirit'.

Mid day, a package was left on our door step. Inside, a gift for my youngest, all wrapped in fun wrapping paper with his name spelled out very clearly. The one whom I only just a week ago wrote to say I worried about him being forgotten in all of this mess. Today I saw his smile light the room when he realized that gift was for him and again I was reduced to tears. Happy ones.

This afternoon I got a second call from the hospital, it turns out that a mistake was made and Josh's file was mixed up with another child's, his surgery is back to the original (new) date of August first. No second delay. Some other poor family is getting that dreaded call tonight.

The ups and the downs, they are the way things go I know that. I know that God is in control, I trust him completely, I have total faith, and know he loves us. I however, am human and sometimes I get discouraged, sometimes I cry, sometimes I give myself a little room for a pity party. God being in control isn't the part that has me upset or doubting... it's just that he isn't doing what I want when I want! ;) You know?

So for today, this minute; Josh will be told on Wednesday morning what is happening and when. Kaleb will be told where he's going and why, and God help us because it will be a horrible discussion for all of us. On Thursday we head to the OR and give Josh over to the surgeons hands. I will do my best to update you as things happen. This is the best way to keep informed if you are not on Facebook.

Thank you for your prayers for us, your encouragement has meant the world to us. I will (barring more changes)... See you on the flip side.

I thought a shot of the horizon would be appropriate today

Thank you

Well folks.... I promised you that if you sent photos of you wearing RED to support #redforjosh that I would show you the final product! Here it is! Thanks to a wonderful woman that I just met last month who offered to put it all together for me! This whole project, started on the day of Josh's catheterization, and ending in time for us to have a large poster for his room at Sick Kids to show him how many people are praying has been one of the greatest shows of support I have seen in my life. We have been so touched by each and everyone of you who sent a photo and message of love, faith and encouragement. CHD is not fun, but watching people band together to show a little boy that he's loved has been a really beautiful thing. In my wildest dreams I didn't know it would get as big as it did... 36X40 will be the size of his poster. It's something he will have for the rest of his life as a reminder that the power of prayer is a strong force against anything you may face. It stands to remind me as well, about how blessed we are to know so many loving people. The part I have found so unreal is the amount of photos we got from people I have never met, people who heard about Josh and this project through twitter, through friends of friends, and through this blog and facebook and took time out of their busy lives to throw on a red shirt, and snap a pic. Through the lens of motherhood is the title of this blog, but perhaps it should be changed to 'through the lens of love' because that is what I am being taught about on a daily level. The love I have for my kids, the love I have for my husband, my family but also the love that God has for me, the love that so many hundreds of people have for us as a family. Life gets tough and it's very easy to slip into obscurity, feel alone and isolated but you have never let me do that, you have all been a constant source of hope, love and faith. Thank you. We have always known Josh's story could shape our lives, I just didn't realize how much.

For those looking for an update... Josh will head into surgery on the first of August due to scheduling changes (Our surgeon has been away dealing with family matters). That too is something that comes with blessings all over it, because some people have been delayed weeks or even months. To only be bumped by a day is a huge relief given how fast Joshua is declining. Just yesterday I took the boys for a walk to the park, but the walk (only one block) made him too tired to even play once we got there. He just sat on a rock beside me and watched Kaleb play.

Once again; thank you for meeting us in our time of trial and doing all the amazing things that you have done. The letters, the gifts, the emails and of course... these precious photos. You will all be remembered for many years to come.

Laurie

waves

Sometimes life is wave after wave of hits, not just common hits like a cold or few sleepless nights but hits that knock the wind out of you.
I remember when I was a kid we used to visit the Jersey shore every summer. One year as I was playing in the waves I was facing the shore and not paying much attention, I looked up at my sister who stood a few feet in front of me and saw a look wash over her face that had me turning quickly to see what horror must be behind me. I should have stayed put because in that moment I giant wave and I came face to face. Salt water filled my nose, my mouth and my eyes, the undertow ripped my feet out from under me and I lost my equilibrium. To say I felt fear and panic in those few seconds under water would be an understatement. I didn't know which way was up, I couldn't find my footing and what had once been water that came to my knees was now far above my head in the depth of the wave. I did surface, probably not very long after going under to be honest (though in my mind it felt like forever). Once I sputtered and coughed for a time, releasing my mouth of the salty seaweed filled water I was able to laugh as I remembered the look on my sisters face and relived the excitement of being alive after my close brush with certain death (dramatics are necessary when telling this story, keep in my mind I was probably less than 10 years old at the time).

I think back on those days of simple summer joys and triumphs and I see what childhood should be. The endless days of nothing to do, the sand that seems to go to eternity just waiting for sand castles and bare feet; the waves that are aching all winter long for the sound of little children's' giggles and splashing hands, and the warm breezes that come just when you seem to need them the most. There is nothing like the feeling of walking through the sand collecting shells after a day of sun and play, your hair smelling of sea salt and fresh shampoo, it's like nothing I can describe. It's being alive. Even the sting of a the first burns of the sun can't diminish the joy of seeing that beach laid out for your enjoyment, knowing you have a whole day to splash, build castles, surf and gather hundreds of shells. Childhood summers should be like that... and if the world were perfect it would be for everyone. Instead, sometimes those waves aren't the memorable fun things they used to be, now they hit and the force leaves you breathless, the undertow threatens to never release you and though you can vaguely see the sun shining somewhere up there, try though you might, you just can't reach high enough to cut through the water.

I talk a lot about Josh, we all know that. What I don't say, in any of my posts, but what haunts me, and claws at me under the constant thrash of waves is my second born. The child forgotten. How will all of this affect him as he grows? How many times will he be put second to the needs of his brother, will he ever forgive me for the hours of attention that his brother requires, the constant strain for my time, the guilt that lashes me every time I hear his voice saying 'Mummy, I want to come too' even though I know in my heart that he can't. How many hours have I already missed because of the steady stream of appointments, the weeks of his life that have already been spent with someone other than me because his brother needs me more in those moments. I see his childlike mind thinking up ways to gain my attention, his struggle to find a place in a family that is swallowed up by the constant threats of CHD, stroke, tests, surgeries, therapy and I wonder if one day he will hate me for it. Will he ever know the depth of the guilt, the ache of the loss of time with him, the full scope of my unconditional love for him? His summer is filled with shuttling him from A to B, his summer, just like Joshua's can't be bought back. The stress affects him too and yet too often he's forgotten. Josh is shown love, attention, and gets a steady stream of encouragement, while Kaleb sits and watches. Is it any wonder we are having trouble with his behavior? Is it any wonder that he is grumpy far too often. I am unsure what to do, how to be the best Mum to both of these boys who both have such different and yet equally pressings needs and demands for me, my time, my energy and my love.

Today was a 'hospital free day' for Josh, but he was still sad all day and it required my time and attention. We did experiments with leaky cups to show why fixing a leak is so important, and we spoke at length about his heart, the hospital and his fears. Tim came home and had to run errands for the church and it required the car and a number of hours and I actually felt relief when he offered to take Kaleb with him. What kind of mother feels like that when clearly he needs me now too? I have gotten a lot of emails after yesterdays' post, encouraging me and offering prayers... this is not a post aimed at getting emails to tell me what a great Mom I am. It's an honest look into the heart of a Mum who just doesn't have it all together, who isn't everything she needs to be to her two kids, and it's an honest look at what being the Mum of a Sick Kid looks like when there are more than one involved. I appreciate the support, the encouraging words, don't get me wrong but I would be dishonest if I tried to pretend I am some kind of super Mom, or worse, a Mom who treats her children equally. In this I fail the worst. My youngest often falls through the cracks, those waves that are tugging me often pull me further away from him and I don't know how to get back to solid ground, with him safely in my arms.

going the distance

It's been a while, as I thought it would be since my last post. We ended up getting the week of holidays at the cottage that we had hoped and prayed for. It was great weather, warm and sunny (for the most part) and other than a little rough patch at the start of the holiday that started with Josh's body temp dropping to a scary 95 and Kaleb feeling crummy for a few days we had a good rest. We still aren't sure, nor are the doctors, what caused Josh to get so ill but thankfully he rebounded and is again normal temp and doing 'okay'. Kaleb's cough (thank God) didn't turn to asthma and we had a good time at Santa's village, going to the beach and even getting in some races at the Go Karts place near our cottage.

We came home on Sunday, and yesterday we headed to Sick Kids for the pre-op. A lot happened, tests, results, talks with all kinds of people involved in Josh's care. It was a long and exhausting day. Josh though was incredible. He bore the pokes for blood with only a small 'ouch' and lay still and quiet for the other tests making it all go smoothly and quickly. He came home last night and played for two solid hours in the sprinkler and laughed until bedtime.

For months now Josh has prayed every night for Jesus to tell God to fix his heart, it's been worrying me because I know that his heart isn't neccesarily 'fixable' but no matter what I say to him or how I explain it he continues to ask. Yesterday one of the surgeons told me 'his heart function is pretty much normal, it's the leaks that cause all the trouble. This gave me an idea. So I told Josh that his heart was not broken, just leaky... and the replacement valves can fix the leaks. So now, he is praying that Jesus tell God to plug the leaks, (a much more viable result to his prayers).

Today, we had an EEG to see if Josh is having seizures in his brain. It's something that they feel could be stopping his development in areas like language, and would explain his moments of 'staring off' that happen. It's apparently not unheard of for the area of the brain that was affected by the stroke to have scar tissue grow and cause these mini seizures, and it would explain why he isn't healing as quickly as he should from the stroke. If this is happening, it can easily be fixed by meds. So, we went again to the hospital and again the poor kid had to undergo tests. He wasn't happy about it, that much was clear but he sat through it, toughed it out and got a treat when it was over. By the time I got him home I thought all was well but tonight when I put him to bed he was angry with me. I asked him to say his prayers and he said 'no'. So I asked him why he was angry with me. His response was explosive. "because I don't want any more hospitals, and no more prayers and no more you' and he turned his back to me and said 'go away'. Ugh, how the heart breaks to hear those words but what was I to do? I couldn't leave, he's my son and no matter what he says I love him beyond anything I can imagine. So I got into his bed and lay beside him, not touching, just close enough that he could feel the heat of my body. I talked with him about the unfairness of his lot in life, I told him I understood his anger, I explained why we had to go to the hospital and I promised him that tomorrow we would stay home all day, no hospitals. He looked at me then, and asked me 'no hospitals?' so again I promised him that I would not take him to the hospital tomorrow. This cheered him a little and gave him something to think about. Then I said 'I know you don't want to pray tonight, and I won't make you, but can Mummy pray for you instead?' and he agreed. So I rested my head close to his and wrapped him in my arms and I prayed, hard, that God would grant him peace, that God would give him strength, and I thanked God for his bravery, his patience, and even his leaky heart. By the time I crawled out of his bed he was almost asleep and when I leaned in to kiss him goodnight he whispered 'I love you Mummy'. Amazing how those words can heal a whole host of hurts, if only my words to him could heal the same way. I wish I could whisper "I love you" to him and know that my words would heal him. How much pain, fear, anxiety must this little boy face and feel? If only there was a way, just for a little while, that I could make it all go away.

He's braver and stronger than a child his age should need to be, and as his Mum I ache knowing I can't do a thing to help him. Not one blessed thing. I feel like him sometimes 'I don't want to pray, I don't want anymore hospitals' sometimes I want to scream that it's pointless... but then I hear the whisper, the 'I love you' before he drifts to sleep and I know that I will pray, and I won't stop. I know that I will do whatever it takes for as long as it takes and that each day is a new day, each day is a gift, each day I will receive exactly the right amount of strength, grace and patience that I need to keep going the distance. This is not a sprint but a long distance marathon and though exhausted I pray for endurance to keep going, for Tim, for me and for those two precious kids sleeping upstairs.

my friend

It's 5:08 as I write this post, the AM variety not the PM kind of 5:08 which is a much more human hour. Kaleb, who didn't sleep until 9:30 PM last night was awake at 4:45 to ask about his missing car... ever had one of those mornings where you are stumbling around thinking 'is this just a bad dream or am I actually on my feet and moving at not even 5 in the morning?! Gross. That's the only word to describe it. However, as I think about this past week, and the week we have coming up I am not as upset as I would normally be. I am so fully exhausted that the idea of a few days at the cottage with my parents and Tim around to help with the boys fills me with enough hope for a rest that I can actually do 5 am without too much inner dread about the day ahead. I foresee a Mani-pedi in my week excursion :D, as well as a fun day at Santa's village!

As I was packing yesterday and thinking about all the things in life that could get us down, all the stress, all the sorrow I realized that even still life could be worse. I heard some horrible news from a dear friend in Poland yesterday. We had a funny relationship her and I, when we first started working together in Austria we did not get along. We fought... a lot. However, God began to work in both our hearts, we began to pray together and for each other and today, as I write this I consider her a good friend. Not long after I left the castle and married Tim I heard that she too was getting married (within a week or two of me). Then she had a little girl, not long after Josh was born, and her little girl was born with Down Syndrome, her sweet child needed to have open heart as well when she was just a young baby. This friend, thousands of miles away has so many echos in her life that are so similar to mine and I always eagerly await news from her. They sent a RED photo, followed up with a wonderful email full of encouragement and prayers. This girl, whom I just didn't like once upon a time is even now, in the midst of her suffering writing to me, to encourage me. This is what a friend in Christ is like, this is one of the thousands of blessings I see in my life daily.

Yesterday I recieved word that her sweet little girl, who has already suffered much is now facing Acute lymphoblastic leukemia; her treatments started yesterday. My friend and her husband (another friend from the days in Austria) haven't slept in days, as their daughter fights so they too must fight. My heart aches to be so far, so unable to help in the face of such devastating news. I would give just about anything to be able to hug her today, hold her hand and pray with her like the old days. 

As I look back on our friendship I see all that I have learned about relationships, all the ways that God taught me patience and more importantly, humility, through this woman. If someone had of told either of us that one day we would actually have a loving friendship I think we both would have laughed... and yet here we are. Thanks to a God who loves us.

As you start your day, or finish it (depends when you are reading this post). Please, say a prayer for this little girl, that God grants her healing, comfort, courage, strength and for her parents N&M that they can find rest in Him, that they receive his abundant blessings, peace that overflows, joy that can only come in sorrow, hope and courage.

Last week I was struck as never before by the verse Matt. 18:20 "For where two or three have gathered together in My name, I am there in their midst." I have heard that verse a million times (truly about a million, most of them in the last five years). Yet, as I think about all the people who sent RED photos in, when I think about all the emails, when I think about my friends I had to rethink that verse. When I see all the thousands of ways that God is taking care of us, the group at St. Paul's who are making it possible once again for us to stay in a hotel near the hospital, for the people at Little T who have taken care of our food, coffee (!!) and parking for the week of surgery, when I think of the little ways that people are caring for us, the texts and phone calls, the thousands of offers to help I realized two amazing things.

1) God is truly in our midst, he's hearing our prayers and he's answering us, even when we haven't got a clue what he's doing, He does and in the end that is what matters. I personally, would much rather know that God knows what's going on, than knowing that I know what's going on. At least it's in safe hands with him, I would probably lose track of all the things he's working out for Josh (especially given the state of my date book these days).

This is true too of my friends, and I hold onto that. We may not be close, but we are gathered before our maker and the numbers are much bigger than two, we are gathered in His name, and He will be in their midst.

2) It's okay to need help sometimes. I often think that I have to be strong, I have to hold it all together and do it all myself (I have a brave face I pull out when I need it). When someone offers to help my first gut instinct is to say no (and I often do) because I don't want to be a burden. I don't want to put people out, cause them work or anxiety. This week my in-laws took the boys for four full days, so that I could focus totally on the house, getting it all packed and as ready as possible for the big move in August. Accepting help was difficult for me, not because I didn't want it, not because I didn't need it; merely because I thought I would be asking too much of them. However, what I saw in the end was that it gave them joy to be able to help. It allowed them to feel needed, it gave them time with their Grandsons, it gave them a chance to show us love in a way that speaks their love language. I can't say I will change instantly and be able to accept help better next time but it has made me rethink the offers of help coming in. I also realized yesterday, when I read my friends email how desperately helpless I felt to ease her burden for her, I thought of all the things they would need right now and I sat there realizing that I am just too far away to do anything... and it hit me square in the face. If this is how I feel, then maybe, just maybe, it's also how my friends feel. They are closer, they want to help, they see my pain and it becomes their pain because they love us, we aren't being burdens, we are allowing others to love us in the only way they can right now. It's not an easy position to be in, (the needy position) but it is teaching me humility, and in the end, that's not such a bad thing.

Ever in flux. Ever blessed.

Getting used to life with a sick kid is knowing that you just can't make solid plans, this we have learned a long the way and will explain the later part of this post. The other things we have learned in regards to the hospital stays are that it's not cheap. There is the food, the endless amounts of coffee needed to get you through the long waits, or even longer nights of no sleep sitting bedside, there is the parking (crazy crazy crazy amounts of money!) and all the other little incidentals that come while staying in a 4X6 cell with one bed and a small couch.

Last night, when Tim got home he gave me a gift bag, with a card. our beautiful new family at Little T have thought of everything we could need during our stay, to show us their love and support they gave us gift cards for the restaurants

at Sick Kids, a 10 use parking pass, a gift card for Indigo for Tim and I to get reading material, a gift card for the shop there so that we can get Josh something nice while he's there, and cards for coffee... they went straight to my heart with that one :).  This gift, like so many others is something that spoke volumes to me about the people of Little T, and the way that God is using them to bless us during this difficult summer. I had to take the time to say thank you. I had to make sure that everyone who contributed to this amazing gift of love knows that we are blessed by it, that we don't need to be worrying about money on top of all the other worries. It's also been a gift that God has used to prove once again that he is taking care of all our needs, that he has this in his control, and that he loves us enough to make sure we get all we need, even the coffee. :) Thank you Little Trinity.

Taking life a day a time has new meaning for us this week. Everyday something changes, plans are thrown to the wind only to be put to rights again hours later, and then yet another change tosses it up all over the place. If someone were to ask me, what are you doing tomorrow... I can honestly say I have no idea. I know what my date book says I am doing but that's just a best guess or in some cases a best hope. We started the week thinking that we were going in for the surgery on the 31st of July; that's the plan, it's what we have made all of our summer plans based on.

I should quickly insert here, for the blog readers that do not know, we have decided to add exponentially to our stress this summer and make a move from the house we live in now which we hope and pray we can find renters for, to the rectory of Little T which is beside the church; making it possible for Tim to be more of a daily presence for the boys and I. We move just one week post-op. Yes. We have discussed this and we have decided that we are indeed insane...

Back to the week then... so the move, taking place in the first week of August was planned based on Josh's surgery, so that I can focus and get all the packing down pre-op and then be in the new house focusing on Josh during the recovery period. In theory it's still nuts but it allows more room for me to settle in and unpack while Josh recovers, still allows time for us at the cottage post-op and in September it means that Josh's bus will already be arranged for the new house, and Kaleb will be in his new school and not need to transition. (I'm justifying our craziness... ). On Monday I was asked by our Cardiologist to give an update on Josh's medical status (she has been on holidays), so I told her what I was seeing, more frequent meltdowns and periods of extreme lethargy, less energy to do the little things and general feelings of 'sick'. The heat is making everything that much worse. When I reported all of this she decided that we needed to push up the surgery date. I got word on Tuesday that it could be as early as next week, sending me and all the other departments in the hospital into a panic because everyone wants a piece of us for the pre-op stage. Dentistry, Neurology, and of course Cardiology; and just to throw more confusion into the mix, Josh has cavities that HAVE to be filled before OR - AND - Tim's only holiday this summer is NEXT WEEK! It's been a crazy pace of packing, making calls, booking appointments, getting Josh to the appointments, and then changing all of the plans numerous times before everyone (about 4 departments at Sick Kids) are happy. Life at the moment is like a Tsunami.

Things changed again when the surgical co-coordinator let us know that next week surgery would not be possible, our surgeon is on holiday for a week. So, yeah! We get our holidays after all! But wait... we still might need an appointment on Monday... and then again on the 15th and then again on the 16th... *insert a big sigh here* because this is the point that I stopped caring and started to giggle (maybe I really am losing it?!). I can't keep up with all the changes and for someone who SUCKS at being organized this week has been a bit of a joke, my poor date book has been marked up and scratched out so many times I can no longer read what's what.

Last night, when Tim got home from work I updated him on the new changes and that definite that we will get in some cottage time before the next round of appointments and we were both filled with peace. It's what we really wanted for Josh & Kaleb, to have time with all of us as a family before Kaleb is off to Grandparents and Josh is in hospital.