To mark Carers Week 2014, I wanted to share the good, the bad and the ugly of things I have learnt from caring for my child with special needs.
I will be forever grateful for the day I was given Billy. I have been lucky enough to see the beauty of the human spirit. Thank you Billy.
Before my children, I knew the feeling of having my heart broken by a boyfriend, an unsuccessful job application or a fall out with a friend. All sad things, but nothing shattered or could shatter my heart like having a child with special needs. The uncertainty, the guilt, how helpless I felt, were just some of the emotions I felt that day. I never thought I would get through the pain in my heart.
2. Life doesn’t always go to plan.
I had everything planned for the arrival of my baby, from breast milk to bottles, all the way to, at which school I wanted him to finish his education. I quickly learnt, that some things are not in my control. It was extremely hard to accept what will be will be. Once I accepted I couldn’t change or control the situation, I started to focus on what was and how to make the best of it.
I spent a total of eight weeks in hospital (on bed rest argh) and after Billy’s birth another five months at the Children’s hospital. It was hard not to learn patience! I also learnt to be patient with others, as many people found it hard to know what to say or how to react. Mostly I learnt to be patient with myself. I was going through a life changing experience and it was okay for me to cry, ask a silly question or take a break from the sadness of an Intensive Care Unit. I believe patience is key to getting through the hard days especially after many sleepless nights.
Every human being is different, not less. I believed this before I had children, and lived it once Billy was born. Billy was born with Craniosynostosis which can cause distorted facial features and head shape. I found it extremely difficult to deal with the stares, the questions and comments, and occasionally I still do. I spent the first year worrying about how different he looked and researching what could be done. I avoided areas that were highly populated with children (they so innocently say what they think) and I carried all the pain. Although I may never not feel hurt from the stares and comments, I no longer wish to research what can be done. I have seen my child go through many medical procedures and I don’t believe it is my right to make that decision. That is Billy’s right completely and besides I love him just the way he is!
Watching my child, my little baby endure many medical procedures left me feeling helpless, guilty, sad, worried and mostly frightened. Each time a new procedure was planned, I told myself it would be easier, but it never was. Each time comes with risks and reminds me how precious life is. Billy has had two major operations, the first at five months old. He required a major skull reconstruction as the shape of his head meant there was very little room for his brain to grow. It was so scary, however we got through it and eight weeks after the surgery, Billy’s womb was close to healed and we started to settle into life at home.
6. Friendships are important.
Friends will help you get through your darkest hours. They will be there to help you smile and cry, laugh and scream, see things clearly and even to let you know when you’re are being a total pain in the butt! Friends are not only important for me but as Billy has grown and friendships haven’t, I cherish the people that give him their time and treat him the same as everyone else. I am thankful for my friends that are still there for me (you do lose some) and also equally for the new “special needs friends” I have made over the years.
7.Life goes on.
When I fell pregnant with my daughter Sienna, I wondered how I would find the room in my heart, but somehow it was love at first sight…again, and the best thing I did. For many years, I wondered if they would ever play together, if Sienna would cope with the extra time I had to give her brother, and if was ever going to be willing to share me. My children are wonderful and the love between them is amazing. They are lucky to have each other and I am so proud to be their mummy ♥
8. Life is not easy.
I have learnt that life isn’t smooth sailing for anyone. There are good times and bad. The difference was my attitude to it. There are days filled with sadness, frustration and thoughts of running away. There are also days filled with happiness, celebrations and feeling proud. Whatever day I am having, I make it mandatory to take time out for at least half and hour to focus on me. I made a decision let go of the bad times and instead be happy. My time out helps me do exactly that!
Just after Billy was diagnosed with Autism, I was struggling to accept yet another blow of bad news. I was relieved I could confirm why Billy displayed certain behaviours but wondered if I was strong enough to get through. It wasn’t long after that Billy became very ill. We almost lost him and even now when I think of that day, I feel a physical ache in my heart. I cherish my moments with my children. We laugh, be silly, be happy, and no matter how hard it gets, make the best of what we have.
10. Unconditional love
Regardless of the challenges, to me Billy is just a regular kid with a sprinkle of magic. I love Billy for who he is. Sienna is also a regular kid with a sprinkle of Billy. I love her for who she is. I think they are amazing and am blessed to be their mum. Billy taught me the most important thing is love. Love each moment, love each other, love the kookiness, love the journey, after all, it’s ours to love.
Now I would love to hear what caring has taught you? Did you learn only good stuff? Do you have strategies to cope with the bad parts? Let us know by commenting below this post!
As always the best information and tips for new carers come from other parents and carers so thank you for sharing your insights!