10. Communication is essential but verbal is a small part . With Aiden’s voice still missing we have learned there are many forms of communication but the most important thing is being able to communicate. We have worked so hard to figure out our own way, thumbs up, pointing, picture boards, iPad Apps, Smiles, reading body language, facial expressions. This has greatly decreased the number of blow-ups Aiden has had. He is able to let us know if tired or hurt or even just Ok. He is working on finding his voice again but in the meantime we work with what we got.
9. There is a so many different types of Cancer and Tumors and a lot of kids and adults are going through this! I don’t know if there has been a sudden increase or if I just realize it more, like when your pregnant and you see pregnant women everywhere. I now see everyday in the news another child is getting diagnosed. It does not matter how much money you have or how old you are. Beverly Hills star Shannen Doherty, Michael Buble son, Sens player Craig Andersons wife; all battling with cancer in their lives. The battle is not fought alone. The list is endless….
8. Kids are tougher then we give them credit for. We live in an age where we try to protect our children so much we are robbing them of their strength and independence. By allowing a child to fall, they learn to get back up but instead we have taken away anything deemed “dangerous”. Seldom do we see kids outside running and playing freely in neighborhoods. I can assure you more children have died from cancer then falling off playground equipment or from getting fresh air. Last Friday Aiden had Gull Bladder removed, G Tube stitched into his stomach and a Broviac IV line placed into his chest by Sunday he was not on anything for pain and smiling! Kids really are resilient.
7. Patience is truly a virtue. We live in such a fast paced Information Age. If we have a question we pull up our phones “hey Siri” and instantly we have what we want, where we want to go, etc. Sitting in the hospital you don’t google for fear of learning the wrong thing. You are constantly waiting, for test results, doctors, transportation, treatment, a cure and there is nothing we can do to speed this along. I can only have patience, faith and hope.
6. We surround ourselves with too much “stuff”. Arriving here in Boston with only a small carry-on and a backpack you might wonder if I am missing anything. But truly, I don’t miss a thing. A couple changes of clothes that cycle through the laundry, a deck of war cards to play with Aiden, books to read and music from Google Play and YouTube and we get through our day just fine. With Christmas fast approaching my heart sinks a little. We would usually be decorating this weekend. I would be well into the Christmas shopping, of things that seldom get played with for long. If I think back to last Christmas I cannot even remember what gifts where given but I do remember the traditions: Baking cookies with Grandma, going to Cedar Hill Tree farm and getting the Tree, building an ice rink in our backyard with my dad, having a photo night under the tree where I look on Pinterest and try to recreate the perfect scene but we all end up being silly and just rolling on the ground together, the boys “photo bombing” each other. It’s not what presents are under the tree Christmas Morning. It’s the pretending to sleep while listening to Aiden sneak down the stairs then run back up to wake Declan up “Santa came!” Running to our room in pure excitement. We have had so many offers for Christmas but all we really want is to be together, to hear Aiden Wake up his brothers, to have those memories leading up to Christmas that make our Christmas ours and that can not be purchased from a store.
5. People care and genuinely want to help. I personally find it so hard to ask for help. I don’t know if asking for help makes me feel weak or that I think in order to be a strong independent women I need to do it all. I can say, without the support of our friend and family and even strangers we would not be in Boston right now getting Aiden the best possible treatment and rehabilitation. We have had so many people reach out to us, people I went to high school with and have not seen in 15 years, neighbors we had never met making batman quilts for the other boys so they do not feel left out,organizing auctions and other fundraising events to take the financial burden off, sending heartfelt messages and chatting with us so we do not feel so alone and so much more. And I know people do not do this for anything in return for any other reason then that they genuinely care and want to help anyway they can.
4. Strength is more then physical. Sometimes it is just doing what needs to be done or just waking up each morning. It is holding yourself together for other to cry on you. It is a battlefield of the mind to stay positive and carry on.
3. We are not special – there is a shocking number of children battling cancer or other serious illnesses. The hospital rooms are full; the icu rooms are full; livers, hearts, lungs, premature babies, cancer, there is no discrimination. Family’s lives are ripped apart, they travel across the world for treatments. I am not the only one leaving part of my family to take care of Aiden. I have met people from Saudi, California, China all with their own story to tell
2. Don’t sweat the small stuff. I can not even count the arguments revolving around “eating all your dinner”. An ongoing battle usually turning a pleasant meal into one with tears and yelling. I think back now and feel so silly. Did it really matter if my kid ate all his broccoli? Maybe he truly did not like it; either way he was not going to starve. I have now seen starving. Don’t get me wrong there are certain things that we need to teach our children to do in life but I think we put too much emphasis on things not so important. Aiden ate almost a whole pudding cup yesterday. The most he has eaten since September 21st. I see these children here fading away and literally can not stomach eating, the thought of forcing a whole plate of food is crazy and not even a consideration. We celebrate they ate a peice of pizza or chocolate cake for breakfast, or ate only mash potatoes for a week because that’s what they could keep down.
1. Appreciate the moment and cherish your life and those lives around you. Sitting, watching my 7 year old son go through this, everyday fighting to talk, walk, sit, to beat cancer I have realized the importance of life and how fragile and taken for granted it is. In my life I have seen too many people battling with drugs and alcohol, many who put a needle in their arm one last time, who get behind the wheel after one too many, who over indulged and are dying from self inflicted habits and it makes me sick. I like to say I was a “late bloomer” I had a “wild early 20’s” living life without a care, I felt I was invincible. I realize now I was wasteful, I was not free I was Stupid. You only get one life, surround yourself with people who care, who bring out the best in you, see the good in each day, stop the negative talk, be thankful, help others, don’t gossip, forgive, create good memories, catch fire flies, sit and watch the sunrise, count stars, learn to be alone, learn to be in a healthy relationship, get active, give one more kiss, read one more story at bed time, look in the mirror and smile, tell your family you love them, put down your phone, turn off the TV.