Tag: teamolivia

While I contemplated what my next post was going to be titled, I remembered something a doctor once told me. Something that has truly stuck with me and something that I now fully understand and work to live by. Back in Chicago, when Olivia was first ‘officially’ diagnosed with Cerebral Palsy, I was sitting in a downtown hospital room waiting for the doctor to come in and tell me what I (we) already knew. She was the most gentle, kind and honest doctor I think I had ever met and she hopped up on the hospital bed next to me and Olivia and broke it down like this. She said, “I am sure you are already aware that Ms. Olivia has Cerebral Palsy. And I am also sure that you are worried about what that means.” I quietly shook my head and nodded, fighting really hard to hold back big crocodile tears that I did not want her to see. She continued to say, “Cerebral Palsy or CP as we like to call it is simply a diagnosis. It does not define Ms. Olivia and it certainly will not determine her future. A diagnosis will help her receive the support and services she will need to gain strength and surpass all goals you set for her.” I sat for a minute, fought off the tears and agreed to use this diagnosis just as that, a diagnosis and not a definition of who Olivia is or what she can and will do.

Rick unfortunately was not with me at this appointment as we needed him to work hard and ensure that our future was going to be ok with him having a good job. So on the way home I remember driving down Lake Shore Drive explaining to Rick that Olivia does have what we feared most, but that everything was going to be ok and that this will help us get her the help she so dearly needs. He probably thought I was nuts because I was so calm, but I felt like I had to be in order to get through to all the things I was going to need to do next – to keep track of all the therapies, the equipment, speciality doctors, medicine and so on.

So why am I bringing this up today? Well, many reasons but I think it is important for friends and family to understand me and where I am coming from better. Rick and I try our hardest to give our children the best lives possible, we want to give them every opportunity to live life to the fullest. Therefore, we try not to treat Olivia too much differently than Ricky Bear or Grace. She goes and does just about everything with us, from sporting events both little league and professional to dinner dates to vacations to movies to neighborhood parties and list goes on and on. Our family is very social and we love every second of it, however, it is definitely not easy for any of us by any means.

When we go places we need to think if it will be easily accessible for a walker, wheelchair or stroller (depending on what we bring that day). Then we have to make sure and bring all the necessary things with to keep Olivia entertained for hours on end, because unlike our other two children and pretty much every other child in the group, Olivia cannot just run around and play. If we go to a restaurant with a playscape or a neighborhood block party, it usually means she may need to entertain herself in the stroller or in a seat because it might not be safe for her to use her walker. This also means, that Rick and I will take turns holding Olivia which can get very tiring for all involved. Needless to say, we have many things to consider and think about than the average parent making plans to take the kids out. I am ok with that, and you should be too.

I am not complaining and by no means want any sympathy. Rather, I ask that our family and friends know that we want to be included in all activities and bring Olivia to as many as things as possible. That we are not trying to be difficult if we need to change plans or do something differently to better accommodate our family’s needs. We want to make sure that Olivia can enjoy as many of these activities too. Also, I will totally admit that sometimes I can seem frustrated or maybe not as social as others at some events. Try not to hold it against me, I am a mom to a special needs kid first and probably have a million things going on in my head that is distracting me;) But as the title of this post implies, we will not let a diagnosis define this family and hold us back. We promise to give Olivia every opportunity to just be a kid and enjoy life just like the rest of us.

Also, I should note that as I try and write this post after I have worked a full 8 hours and have dinner cooking on the stove, I am also chasing Olivia around the house because she somehow stole a pen without me seeing and is writing all over my walls! {insert hand over face emoji} Olivia certainly thinks of herself as a typical 5 yr old and is not letting her CP define her, therefore neither shall I.