I have a difficult decision to make, which I'm really struggling with.

We live in New Brunswick, Canada. Myself, my husband, and our children(our special needs son who just turned 9, his sister who is almost 7,and his 3 yr old sister). Our family and the majority of our friends live here, close to us. They are a tremendous help with the girls when we need it, and a huge support to me. Many people offer to help with our son, but he's a complicated little fellow. His feeding tube, and the possibility of difficult seizures- well, they're a little intimidating to people. He also doesn't walk- so he's getting harder for people to lift, and will only get harder. So, while we get a lot of help when we need it with the girls (for instance if he had to go in the hospital),we have very little help with him. Part of that may also be the fact that I don't *feel* as though I can leave him, because our nearby hospital is not knowledgeable in the workings of feeding tube buttons, and how to replace it if it were to get accidentally pulled out.

Recently, we went to the IWK, a children's hospital that is in Nova Scotia, Canada. About a 4, or 4.5 hour drive away from where we live. We went for a scheduled visit for Cameron to put him on the ketogenic diet for seizures. I love the IWK. I love the care they give, I love their knowledge in all things about my complicated little man. We actually lived closer to the IWK when Cameron was very young, but moved back home to be close to family again. Well, when we went back for the scheduled visit, I fell in love all over again. I love the city, I love the province, I love the people. I LOVE the hospital. In NB, I'm the "resident expert" on gtubes.It's scary, and I'm tired of it. I always feel so tied to Cameron, like I have to be close to him, or always able to be contacted by phone should a problem arise. If he were at school and an issue happened,they can't just call the ambulance or the hospital, because they wouldn't know what to do.

So, imagine my feelings when we were at the children's hospital for that week, and I took Cameron to the playroom. There were maybe 8 children total in the room. Besides us,there were at least (that I could see) THREE other children with feeding tubes (they were hooked up for feeds). THREE. My initial response was wow, this is so comforting. A place where we aren't different, and I don't have to explain my situation or anything to these other parents. They "get it". But within 3-5 seconds of my feeling of comfort, I was completely overwhelmed and had to hold back tears. There were THREE other children in the room with feeding tubes.The depth of what that meant was astounding. If something happened- if something happened there, there were TONS of people in that hospital with 1st hand experience with those buttons who could easily deal with it. It wouldn't turn into an emergency situation. It would be dealt with quickly and probably without issue.

The next day I had a meeting with the dietitian for teaching purposes in our room, and one of the Child Life workers came down and asked if they could take my son to the playroom for me while I had my teaching, and I sent him on his way with her. The dietitian asked me if I was a bit anxious about him going. I broke down and cried. The complete opposite, I explained. I can send him with someone and not be with him, and know that he will be ok. I don't have that sense of comfort at home.

Do you know what I would give to be able to go on a date night with my husband, or to go on a trip for work, or go away with friends? I adore my son, and I want to be his primary care giver, I really do. But, I want to feel like there is a backup, someone else who can handle things and so I don't have to worry. I worry about myself and my safety and my life quite often. And not because I don't want to die- but because of the fact that it TERRIFIES me to think that if something were to happen to me, what would happen with him. (That being said, my husband is very good with him, but I do more of the hands-on things with Cam, as he works outside the home). I think about Cam's future often, and that I won't be here to always care for him. Where we live now, and how things are, no one will understand how to care for him.

Our trip to the children's hospital made me want to move back there (closer this time). There is such an amazing community around that hospital. I feel at home there. I really like the city. For the most part, it is more wheelchair accessible. My husband can easily transfer for work, and there are more opportunities for him to advance in the company there that don't exist here. Seems like an easy choice, right?

Not exactly. We have been blessed here. Where we are now (a small community), they have supported us tremendously.People know us here. They know Cameron. His school (kids and staff) are amazing to him. They have bonds with him that would be hard to build somewhere else. Our family is here. I do know from the past though,that I would still come home for visits and spend good quality time with them. But still, I worry about my parents. They are still relatively young, but what will happen when they get older, or if they needed me?

Part of me keeps thinking that I should keep living where I am and fight to make changes here and get things set up ideally for him. But the reality is, I can't make gtube experts appear out of no where who are going to be here the next 50+ years to care for him.

A few weeks ago, I had made up my mind. We were going. I was 98% certain.And we were doing it now, during the summer months, before school started back up. I had already said my "maybe goodbyes" to the school staff (a very emotional thing for me- I cried for days). I told my hubby to hold off on asking work for the transfer because we needed to find a place to live, and that would be a challenge. I was right.

Things have never been easy for our family. Medical bills, insanely expensive equipment, the fact I can't work outside the home, and my husbands knee surgeries. Let's just say we have lots of love, but an over-abundance of money has never been an issue. We've been married for 10 years this summer, and we still do not own our own home (yet). So, we don't have the financial means to just move to a new place and buy (or build as we were hoping to do to work for Cam's wheelchair) a new home. Especially in a place that is MORE expensive to live than here. If we moved, we would have to rent. Of course, there are issues with that. We'd have to rent a house to have the space needed for all his equipment and the 3children. Not only is renting a house insanely over-priced, but he went to look and there is nothing that you can get a wheelchair into.

And then there is the school issue. It takes SO much work to get Cameron moved into a school and get the staff trained and the kids accustomed to him. I told my husband I'm only doing it once. I don't have the energy to do it, then do it again a year or two later. Plus, he needs to get into HIS school and stay there to have any chance of the other kids making connections with him. The issue is, if we could find a place to rent that would actually work, what are the chances we would find a house that works for us to buy later on down the road. Not good odds. So, we're stuck on the living thing.

We tried buying lottery tickets, but that didn't pan out. And none magically appeared, so it isn't looking good for us. It's quite disappointing,as I had done a lot of soul searching, and had made up my mind, which is really difficult for me, and now it can't happen. When we were visiting, we even happened to drive by a house that we all liked that was for sale, and it isn't advertised as such, but it has a ramp on the house. The girls noticed right away that there was something with a lady bug hanging off the house (their fav)and so we all fell in love with the ladybug house. A ramp and the right number of bedrooms and a ladybug. It was like it was meant to be. If only I could sell a kidney to get the down payment...

I guess we're back to living on love and playing the waiting game. I'm not quite sure what the right decision is. I thought I had made it. I thought I had seen all the signs pointing me down that road. Now I sit and wait and wonder what will happen. It's not a good feeling to feel stuck. I await a miracle or a sign to tell me what to do.