I am so excited to have a guest post from Cary who blogs at About the Small Stuff. Cary and I "met" when I found her blog last summer. I read a post of hers where she described herself and I immediately felt a kinship. We have many many things in common, first and foremost, good Canadian girls (me on the west coast, her on the east) who love their red wine (ha!). No but seriously, the more important similarities go further.
Cary and family
Ben rockin the walker
Before I share her guest post with you, I would like to share another post of hers. This one, a guest post for someone else, speaks volumes to many things I am feeling now (grieving for the twins), and many more I hope to feel in the future (acceptance).
Ok now, I've said enough. Without further ado, here we go:
Just before Asher was diagnosed, Tracey had mentioned to me that she’d like me to do a guest post for her. Her request was to do a post on what it’s like to have twins when one has CP. Like Tracey, I also have twin boys, born very early, and one has CP. Daniel and Ben are now 3 and a half years old. Ben has CP. He was diagnosed just a week after his first birthday. Two and a half years after diagnosis, I can now say that life is good. Very good, in fact. Sure, our life may have a few more challenges that most other families, but we still feel very blessed.
I have been struggling to write this guest post for the last few weeks. I have started and stopped many times. In the end, I decided that I should give all of you, Tracey’s readers, Tracey’s family and friends, some advice on what to do and not do now that you know that Asher has CP. So here goes:
- Don’t say things like “it’s all going to be OK”. This statement really does nothing to comfort the parents of a child newly-diagnosed with CP. Instead it tells them that you are in denial and don’t want to understand the very real challenges that Asher is facing.
- Do say things like “Asher is amazing and beautiful and wonderful”. Do comment on the amazing progress that he is making.
- Don’t pity Asher or his family. There is nothing pitiful about them. Asher is perfect just as he is and he has a wonderful family to love him.
- Do empathize with them. Understand that life is often difficult for them. That there are many, many appointments and hard work ahead of them. But please, please do not pity them.
- Don’t come to Tracey and Jordan with “miracle” cures that you heard or read about. CP cannot be cured. Asher has suffered from damage to his brain. That cannot be changed. [Note from Tracey - I agree 100%. Nothing is going to "fix" Asher. That said, if you have some legitimate alternative therapies you've heard of to supplement his traditional therapies we would love to hear about it.]
- Do come to Tracey and Jordan with offers to babysit so that they can get Asher all the therapies and treatments that he needs in order to be his best self.
- Don’t be scared to ask questions about CP. Tracey and Jordan are not so emotionally-fragile that they can’t talk about it. They are not in denial and therefore face the fact that Asher has CP every single day…so they don’t mind talking about it. In fact, if they are anything like me, they actually WANT to talk to you about it. They like to know that you’re curious and want to REALLY understand how things are with Asher.
- Don’t come to them with stories of other kids with CP and the fact that they can climb trees, ride a bike, play hockey, so therefore Asher will too. CP comes in many different types and severities. No child is affected in the same way. What one can do, another can’t. What one can’t do, another can. Some talk and some don’t. Some walk and some don’t.
- Do see Asher for exactly who he is. Comment on what Asher can do. Appreciate even the tiniest bit of progress. Learn to define progress in “inchstones” instead of “milestones”.
- Don’t assume that Tracey and her family are now any different than your family. Yes, they have some different challenges than your family may be dealing with, but they are the SAME people that they were before Asher was diagnosed. They are still a family who loves and laughs and cries together, just like they were before.
- Do include them as you did in the past. But as Asher gets older, you may need to think more about his abilities and making events and parties more accessible for him. If you don’t know what to do, ask his parents. They are the experts.
- Don’t be scared of all the “equipment” that may soon be in their home. Things like standers, and walkers, and wheelchairs are amazing things that will help Asher to progress and be as independent as possible.
- Do understand that independent walking, while a great goal, may not be the most important thing for Asher to accomplish. Many adults with CP can walk independently, but most choose to use other means to get around in order to conserve their energy (such as a wheelchair). Better goals may be for Asher to be a happy and independent adult.
- Do know that in the end, it really will be OK. Asher will amaze all of you. I have no idea what his physical abilities will be. Regardless of whether he walks independently or uses a wheelchair, he will still amaze you with his determination, his spirit, his resolve. His parents will become CP- and Asher-experts. Confidence will replace doubt. Laughter will replace tears. Joy will obliterate sorrow.
- Know that Tracey, Jordan, Rio, Nolan and Asher will be just fine. Because they have YOU to love and support them.