I have officially changed sites of my blog to www.sloanepasher.com Please check it out, it is a redesigned site that houses all of Sloanes info as well as A Fathers Blog. Please join the the email notification to receive updates when the blog is updated.
Sloane and Emma during one of their play dates.
It is with a heavy heart that I tell you all, a dear friend of Sloane’s and our family passed away on Tuesday December 13, 2012. Emma Juilet Miles was just 5 years old and suffered from a number of medical complications including Aicardi Syndrome. Emma had a difficult but impactful life, she was loved by so many and changed many lives for the better.
The Memorial Service was held for Emma on Monday night, what a beautiful tribute to her life. Her parents Curtis and Amanda did a fabulous job at making this night absolutely perfect. I can only imagine the rush of emotions they are experiencing right now. The pain of losing a child is unimaginable to me. I’m sure the most difficult time lies ahead when life continues on for them. We are thinking and praying for them on a consistent basis, I encourage all of you to as well.
I can’t help but think of Emma in heaven right now. Running, talking, laughing and just enjoying the things she wasn’t able to enjoy here on Earth; it brings a big smile to my face. I really believe all things happen for a reason (this is God’s plan for all of us). Emma’s life on Earth was to make an impact in other people’s lives and as experienced firsthand Emma you succeeded. Emma you have made me look at life in an entirely different way and for that I thank you.
Curtis, Amanda and Emma were the first Aicardi family that we met, just days after Sloane’s diagnosis. They were a huge part in helping us cope with the news and helping us to understand that there was hope and that life with a special needs daughter is rewarding and life changing.
This week has been especially difficult on me. I can’t help but think that we could be going through the exact same thing the Miles are going through at any moment. This is a reality for us that we are preparing ourselves for, but based on the recent events with Emma I realize we are a long way away from being able to deal with that reality.
Rest in peace little Emma, you are loved by so many.
I have questioned myself about posting this topic, but it bothers me so much and I have put so much thought into it over the last many weeks that I don’t think it would be fair not to share it.
Is there such a thing as spending too much time with a special needs child?
I already know the answer from those that have a special needs child, you would do anything for that child. I’m not saying we wouldn’t do anything for our other children, its just different. They are able to communicate (both verbal and non-verbal), express their emotions, react to things around them and even acknowledge your presence.
There have been some comments of late that imply we have been spending too much time with Sloane’s needs and sacrificing time on other things (including our other children). This is something that Steph and I struggle with every day of our lives. When I come home from work and play rough house with the twins, I look at Sloane laying motionless on the coach and wish so badly that she could join us and be part of the family. There are far too many times that Sloane is not included in family activities because of her inabilities. I find this incredibly difficult to deal with because my idea of family is about spending time TOGETHER. Every time we go out on a “family trip” without Sloane, I can’t help but think of her not being with us and how our family is incomplete without her.
It has been mentioned that the twins may be losing out on things because of the focus that Sloane needs at times. I couldn’t disagree with this more, I think the twins are being exposed to gentle qualities this world is losing touch with more and more every day. Qualities like sympathy, empathy, tenderness, compassion, sacrifice and caring for the less fortunate. I really think they are learning what a true family is all about, caring for a sister that needs extra care will help to develop these qualities. I think about some of the things that they might miss out on (birthday parties, family vacations, special holidays) but in thinking about these things I believe they are meaningless in the grand scale of life. I would rather have my children know what it is to be tender and empathetic to children like Sloane than experience a 2 week trip to Europe. Don’t get me wrong these are great experiences and memories that can be shared for years to come (and I would welcome the opportunity if it is possible) but they are just that memories. The qualities that the girls have learned and will continue to learn will be ingrained in the fabric of their personalities forever.
I would love to hear what others think about this. I’m sure there are lots of others that wouldn’t agree with this outlook, but this is what our family is becoming and I am proud to know that my family will grow up being TOGETHER and spending time with each other even if it means sacrificing some of the more fun things in life. BTW, we are seeing the fruits of these qualities from the girls already.
It has been a while since I posted, things have gotten even more chaotic for us. For those of you that aren’t aware, I mentioned in my last blog that my sister was fighting cancer. I’m sad to say that my sister lost her fight the very next day after I posted. Thank you for all the sympathies and well wishes, my sister had a great life it is just unfortunate that it had to be so short.
Sloane did manage to get better from the pneumonia and was released after a 2 week stay. That being said she is now back in at Sick Kids for another respiratory infection, she is once again back in the ICU after declining rapidly. Her breathing is very laboured and she is being assisted by a CPAP machine. We are hoping that she will be sent back up to the general ped’s floor shortly, but they want to ensure she is stable for a period of time first.
The last two hospital visits have been very difficult on both Steph and I. Steph is a pediatric nurse and has been involved in life and death situations with other people’s children many times. When I see my wife panic during Sloane’s situations I know there is something seriously wrong. Sloane’s last two visits are the first time I truly saw my wife fear for her daughter’s life. If moving forward this is what each visit is going to entail, I’m not sure if my heart can handle it.
There might be some families out there that can relate to this story. We try to stay by Sloane’s bedside as much as we possibly can, although we do need to leave for food and coffee breaks from time to time. During these times away from her bed I fear the over head PA system. If you have spent any length of time at Sick Kids, you would know they always announce any codes over the PA system so that the appropriate medical teams can react to the situation. I cringe when I hear the initial beeps of the PA, followed by the words “Code Blue”. I wait to hear the floor in which the code is called and if it isn’t Sloane’s floor, I breathe a sigh of relief (pretty pathetic that I am relieved, because another parent is going through hell at that very moment) but if it is Sloane’s floor my heart sinks to my stomach and I rush up the elevators to ensure it isn’t Sloane that has succumbed to her illness. As much as I realize that Sloane is in Gods hands it doesn’t make it any easier. We love Sloane so much and we want her to be with us for as long as possible.
I am quickly learning that there aren’t any routine visits for Sloane to the hospital, even if we think that it’s minor, things can deteriorate so rapidly with her. Are there other families out there that deal with these similar feelings? What do you do to cope when you are in the hospital?
Thank you for reading the blog, please comment if you feel at all inclined to.
Sloane cuddling with her new teddy bear from the StarLight Foundation
It has been a while since I posted, things have been a little bit on the busy side for the Pasher family. Let me give you some context before I jump into this post with both feet. My sister has been diagnosed with lymphoma of the brain and lungs. Over the past week she has undergone 4 brain surgeries and has undergone her first round of chemo therapy. We have almost lost Dawn a number of times over the past week and a half and the overall prognosis is quite grim. To make a difficult situation worse and more stressful, Sloane was admitted into Sick Kids hospital on Thurs with extreme difficulty breathing and has continued to worsen to the point where she has developed pneumonia.
We all go through difficult periods in our lives, times of uncertainty, health concerns, family issues and so on and so on. It just sucks that we seem to be going through all of them at one time,. I don’t write these post to elicit sympathy from others, I write these because it is my way of coping with the difficult times and letting others that are going through similar situations know that there is hope and that they are not going through it on their own.
Let me start off by defining faith from my perspective. Faith is an unwavering trust, hope and belief in something/someone that can’t be seen or heard. As most of you are aware I have a strong christian faith and believe that God is in control of all things. I am now questioning my own definition of faith. Don’t get me wrong, I’m not questioning my faith. I believe God is in control more now than I ever have in the past, I’m just questioning my historical definition of what faith is. I said that faith is unwavering, I don’t believe that is the case, I think we as humans question our faith and beliefs during trying times and I think we can learn a lot about ourselves and the faith we do have during these time of uncertainty. I would be lying if I said that my faith hasn’t been tested over the last many weeks. I do think quite often about why God has allowed all of this to happen and question what he can do about it. I always come back to the same conclusion, there is always hope through my faith in God. I’m to the point now where I don’t try to understand why and how bad things happen because I will never be able to comprehend or understand these kind of things. I just hope and trust that what does happen, happens for a reason and that my faith in God will get me through it no matter what the outcome. This way of thinking may seem strange to some but I really believe that is what true faith is about. I can’t help but think of the verse in Mark 9:24 “Lord, I believe; help me with my unbelief.” I find myself saying this more and more lately but surprisingly enough I have this inner peace where I feel calm and a sense of reassurance.
I would like to get your opinion on something, do you think it is God testing my faith or is it me testing my faith in God. I really believe it is the ladder of the two. I honestly don’t think God tests us but we continually challenge him when things aren’t going our way and blame him because bad things are happening to us. That isn’t fair, since when did it become all about us.
The Pasher Sisters posing for a picture.
Sloane is blessed to have 2 sister’s (twins at 3 years old) that love and adore her. There isn’t a day that goes by that they don’t squeeze her tight (much tighter than she would like) and tell her that they love her. I have no doubt in my mind that they are going to be the best sisters Sloane can ever ask for as they all grow up. I can’t help but think how Sloane’s condition affects them and the emotions that come along for siblings of special needs children.
At three years old we have questioned the comprehension the girls have had of the situation. It wasn’t up until a few weeks ago that we truely understood the affects of Sloane’s condition on the girls emotionally. Steph was taking them to the daycare for the day and Avery said “Mommy, I’m sad”. Steph replied “Why are you said Avery” to which the response was “Because Sloanie will never walk”. Steph had a hard time driving through the tears after that. Over the course of the last few weeks we have also found that they miss us (and Sloane) when we are in the hospital and that they are fearful of Sloane’s health. It’s tough hearing on a consistent basis “Sloane sick? Sloane need to go to hospital?” from both Avery and Kinleigh. These questions come up when Sloane sneezes or spits up some of her formula. I guess this has become the norm for Avery and Kinleigh.
Steph and I have tried to balance the needs of all our children, but unfortunately Sloane’s medical needs have been so abundant over the last 16 months it has been very difficult to give Avery and Kinleigh all the focus they require and deserve at this tender age. Sloane has had a number of length hospital stays over the course of the last year, Avery and Kinleigh have been passed from family member to family member during these periods of time. Although we have had some great support in taking care of them, it is not the same as having thier mommy and daddy there on a consistent basis. There have been a number of times we didn’t see them for over a week due to circumstances at the hospital. We are noticing them now act out for attention, I guess they figure negative attention is better than nothing at all. This could be regular 3 year old behaviour and maybe we are reading into it more than we should. It is definately a concern of ours that we are looking into further. A child life specialist at Markham-Stoufville hospital warned us that we shouldn’t underestimate the possible side affects that Avery and Kinleigh are prone to because of the situation they have been born into.
Don’t t get me wrong we have great kids, I just struggle with the fact that I can’t pour as much time into them as I would like to. Maybe this is something I need to get over and just spend quality time with them when the opportunities present themselves. I would love to hear your insights.
Well the Inaugural Sloane Pasher Golf Tournament was a few weeks ago. The event was a huge success, we were able to connect with friends and family while raising money for what we think is a great cause. They were able to raise $45,000 to help with Sloane’s care. Steph and I were overwhelmed with the love and support we received from family, friends and even complete strangers. Thank you from the bottom of our hearts for your generosity and willingness to help out a little girl in need. I will keep everyone updated on Sloane’s development through this website.
Banner made to welcome the Guests at the Golf Tournament
I just wanted to comment on my buddies that planned and executed the golf tournament so well, words can’t describe the appreciation I have for these guys. Bryan Yetman, Mark Nazarko, Bryan Smith and Mike Behm have been my best friends since we were in grade school together (probably since grade 4 or 5). I remember when I told them over a year ago of Sloane’s condition the concern they had on their faces and in their voices. They came to me about six months later saying that they felt so helpless and really wanted to help us out in whatever way they could. At that time they presented me with a letter asking permission to look at ways to raise funds for Sloane’s immediate care, and later to look to starting the Sloane Pasher foundation. The golf tournament was a good start at looking after Sloane’s and while there are plenty of expenses that lie ahead we too would like to start to work with our friends to start to seek out opportunities to help other families in need. While we aren’t quite sure what that looks like at the moment, the conversation continues. These guys have sacrificed a lot over the past year and spent many hours focusing on the needs of my daughter, they are true humanitarians and the best friends I could ever have. I thank God every day for the involvement they have in my families life.
If you weren’t aware Sloane was featured (front page) of the Whitby, Oshawa and Clarington news papers last week as well as being interviewed by Rita Nave of Studio 12 news out of Oshawa (CHEX tv). Steph and I were so excited for the opportunity to spread the word of Aicardi syndrome and more importantly to let other people know that are currently dealing with special needs children that they are not alone. We really do want to focus our efforts on providing support for families struggling through this kind of thing, we aren’t quite sure what that means in the future but presently we continue to listen and provide support via the website/facebook/email/phone and if possible in person.
Thank you once again for keeping Sloane and the Pasher family in your thoughts and prayers. Rest assured that you are all in ours.