So this special journey were on brings such highs and lows everyday. When I think we've had a rough week with seizures and no sleep I then look around and see we're not suffering as much as others we know. Having a child who has a life limiting condition is hard because along with it we meet other children who are more vulnerable than Ethan, families who are suffering every single day, families whose children don't make it through, children who are put through pain every single day, brave children who still continue to smile even though their suffering but more than that families who unconditionally love their children no matter what.
However hard this special journey is without it we wouldn't have met the amazingly strong families and built such strong new friendships. I have amazing friends and family who accept Ethan for who he is, but no one truly understands our special journey as much as those who are actually on the same special journey. They understand the lack of sleep, the prejudice our children face, the looks of discust because our children are different, the heartache of seeing our children have seizures, the hard reality that our children may never walk or talk or be able to do things for them selves and the fact that our children can't tell us how they feel or how their condition really affects them.
On this journey unfortunately not all of our special children make it through. Whilst we can all feel the pain of the families going through it, you just can't fully feel that pain of loosing a child until you have gone through it yourself. I cannot imagine how hard it must be for these parents. We can do our best to be there and support but for these families the only people who can truly help them is those in the same position.
Every day I am reminded of the harsh reality of this life. I treasure every moment I have with my special boy and will continue to hold him tight and bring happiness to him every day. Having people on the same journey makes it easier to understand how your feeling. Seeing how strong others going through harder situations is what keeps me strong. I try to not moan about the hard times as I know that just round the corner someone else is going through a harder time than me. I put to you today to live your life without regrets, love those who are close to you and treasure every precious moment you have with your children. Imagine how others are feeling before you complain about your own life or how your child is acting up. I would love more than anything for Ethan to be running around causing havoc and being "normal". The most important thing is to remember someone else is worse off.
My son is special and is loved unconditionally no matter what. He makes me smile every day and amazes me with his strength and determination. He has special friends who are even stronger and it amazes me that no matter what's thrown at them they carry on. Their bodies go through so much and it's so unfair. But their here with us and that's all we need to remember and treasure. They are no different to other children and I thank those of you who see them as no different. My heart goes out to those who have lost their special children on this special journey and pray you will find strength to live on in their memory and make them proud.
To all my special friends you are amazing and so are your special children. Thankyou for understanding and helping us through.