An Official Diagnosis: Cerebral Palsy
I dive into Camilla officially being diagnosed with Cerebral Palsy (CP). But more importantly give some bullet points on what CP is, how many people it effects, the main types, etc. Along with a few links to resources where you can learn more about so any different aspects of this condition.
“It’s a matter of how we see the challenge in front of us
and how we engage with it.
Persist, pivot or concede. It’s up to us, our choice, every time.”
-Matthew McConaughey Greenlight
*Disclaimer…if you’re reading this on your phone (which is highly likely) it’s a long one. But I so encourage you to read on…or at least skip to the definition and bullet points about CP. This was a tough one to write but I wanted to get information out there. I finally felt ready to talk about Camilla’s official diagnosis in the hopes of spreading some knowledge. And show support to others navigating some unexpected and uncharted roads.
We were “introduced” to the term cerebral palsy at a neurology appointment when Millie was about 1 year old. (Don't leave to go Google cerebral palsy just yet! I give an overview of what it is below) Her neurologist at the time told us that he doesn’t like to officially diagnose kids with CP before they are 2 years old. But he wanted to let us know it was a good possibility for Camilla. When he told us this my heart fell to my stomach and I’m not sure why because we already knew Camilla had developmental delays and was working hard in therapies to retrain her brain. I think actually hearing a diagnosis or answer to some of the things going on was a bit jarring because it also made it that much more real that the road ahead for her was going to be a lot different then many of her peers.
The rest of the appointment I was only half listening, I really was trying to take in, digest, understand and retain all the information. However the other half of me was trying to hold back tears and to be honest I think I went on autopilot a bit. Thank god that Eric helped fill in the gaps later where I said “ok” or “yes” but didn't recall what the doctor had told us. He could have been reading the ingredients of a cereal box for all I knew.
Fast forward to the late summer of 2022 and we were with a new neurologist. (Remember never to feel bad moving to a new doctor!) Camilla’s neurologist actually talks with us, not at us. At this specific appointment her neurologist officially diagnosed Camilla with Cerebral Palsy. This time around it was still a little tough to hear but I didn’t have that stomach drop because I feel we are more confident in what we are doing for Camilla. And it helps that Camilla shows us there is no stopping her!
Even if the official diagnosis was a little easier to process it took us quite a while to tell anyone. We wanted to try and tell our immediate family in person and even as much as we saw them after that appointment we didn’t tell them until late last year. Even before today many family and friends didn’t know about this diagnosis. I can’t speak for Eric but I know for me it took me so long because I was still processing internally and reading up on CP. I wasn’t ready to start talking about what it was or what it meant. I’m still not 100% comfortable saying it out loud but I want to get information out there! A dear friend said once “healthcare stuff is hard to share for sure” This helped me take a step back and realize its ok to take my time to share and more importantly have all the information to answer questions.
The official diagnosis was made from an MRI Camilla had when she was about 1, that showed a minor brain injury suffered in utero that led to either a loss of blood or oxygen. This injury caused white matter loss on both sides of the brain but primarily her left side of the brain which in turn affects the right side of her body. Camilla has Spastic CP and more specifically spastic hemiplegia/hemiparesis.
Millie has worked so hard to strengthen and create a new motor plan to engage and use her right side. She knows what she wants to do its about her brain talking to her body to actually do it, When it comes to her right leg and arm, Millie’s arm/hand are the weakest of all her limbs. However she has made amazing strides in strengthening her right hand and overall usage/movement in her arm and specifically her hand. There is a lot of stretching to loosen those muscles in her arms and legs, especially on that right side.
When it comes to communication she can’t quite verbalize and get the words out so we can understand what she wants to say. Millie uses a combination of sign language, ACC device and words. She’s your typical kid and will remember everything you tell her…between Camilla and Vivienne we can’t forget anything! Camilla’s right side is tighter than her left, especially her right hand. I’ve said this before but her brain and her body know what they want to do. It's all about finding a new way for them to communicate to each other, motor planning for the brain.
So what is cerebral palsy….I include some links at the end but give some information below.
Cerebral palsy (CP) is a group of neurological disorders that affect muscle tone, movement, balance and motor skills. It is caused by a brain injury or abnormality that occurs before, during, or immediately after a child's birth. Cerebral means having to do with the brain and palsy means weakness or problems with using the muscles. CP is the most common lifelong motor disability impacting over 17 million people worldwide.
CP impacts coordination, balance and movement in a variety of ways: spasticity (stiffness), hypotonia (low tone), dystonia (fluctuating tone) and athetosis/chorea (extra involuntary movements).
There are 4 known main types of cerebral palsy: The most important thing is that CP impacts everyone differently and looks unique in each person.
Spastic (most common, makes up 80% of CP conditions): increased muscle tone which means muscles are stiff and can result in awkward body movements
Dyskenetic: difficulty controlling hands, arms, feet and legs. Movements are uncontrollable and can be slow or fast. May also have difficulty sucking, swallowing or talking.
Ataxic: balance and coordination issues and difficulty controlling body when reaching for items. May also have problems with activities requiring significant control such as writing or opening items.
Mixed: showing symptoms of more than one type of cerebral palsy
Here are a few quick facts:
There is no cure for CP (YET!)...early intervention is a huge factor!
CP is a condition that is permanent but not unchanging
Signs and symptoms of CP can vary from person to person. CP can affect the whole body, one or two limbs or one side of the body.
Motor disabilities range from mild (minor limp) to extensive (paralysis of the legs or hands)
CP can also include speech impairments and sometimes intellectual disabilities
Treatments can vary from a variety of therapies (physical, occupational, speech, etc), surgery, medication. The use of assistive devices for mobility, communicating, seeing, and hearing can also be an important part of CP treatment.
When we left the appointment we started to read up more on CP and found there are a lot of people in the public eye or related to someone in the public eye who have CP. This part you can Google because I’m not sure of everyone’s interest and who would recognize a name or two. A few to put out there that might be familiar names…RJ Mitte from Breaking Bad, Nicolas Hamilton (race car driver and Lewis Hamilton’s half brother), Michael Kutcher (Ashton’s twin brother), Jason Benetti (White Sox announcer and sportscaster…even if not a Sox fan you have likely watched a sporting event that he has announced). The list goes on and includes beauty queens, comedians, athletes, authors, etc.
I remember telling Camilla’s physical therapist of the possible diagnosis and she said “Ok. This is just a label to her condition which helps a lot for insurance purposes. We will keep pushing forward with our work and we’re already on the right path. This won’t affect our efforts in a negative way at all.” This has stuck with me ever since…it’s just a diagnosis and nothing to do with her own abilities.
Camilla, her sisters and possibly her friends don’t really understand the scope of her diagnosis or what it means on a more in depth level. Vivienne has really stepped into a unique little/big sister role and not only helps but encourages Camilla. She doesn't think she isn't able to do certain things, she just knows Millie might need some extra help or adjustments. Sometimes helping her a bit too much and picking her up or helping her walk before we can run over to assist for safety.
An amazing thing about kids is how truly resilient they are! Yes, Millie gets frustrated or tired quicker sometimes. But she also works so hard to figure out how to do things she wants to do and keep up with her sisters and friends. This little gal has some determined bones in her body…and even if she can’t always find the words, don't let that fool you because her cognitive ability is right where it should be. She gets it ALL! You can’t always judge a book by its cover.
In the past Eric and I would sometimes get worried when we would have plans to get our friends and all the kids together. A million scenarios and questions have gone through our heads but mainly around if they think we can't do things or it might be harder to do x, y, z with Millie? One day I said to Eric…if people (in a general sense) are thinking these things and making assumptions do we really want to be friends with them? It’s tough as you get older and life grows and happens…will friendships grow with you and your ever changing life? These questions are tough enough when you are just talking about yourself let alone factoring in kids. We lucked out in all areas of friendships and have some fabulously kind and genuine souls in our life. It’s one thing for your friend to have your back and your best interest at heart. But it’s a whole other level for them to have your child’s back and best interest at heart (three times over).
Yes our friends are aware some accommodations may have to be made for Millie but they never once rule her out and 100% know she can jump in with what all the kids are doing. They don’t see her as being any different than our other girls or their kids. This makes all the difference in the world to both Camilla and us.
And of course our families are ABSOLUTELY AMAZING with all of our girls! Talking about them might be an article in itself.
There are so many unknowns ahead but when you take a step back isn’t that true with anything in life? Does the future we envisioned look a little different? Yes. But to play devil's advocate, when we moved here 9 years ago we thought we’d be back in Chicago after 2-3 years….9 years later and this is now home. So….you can never really predict the future. We are always pushing Camilla , she pushes herself and we've lucked out with therapists and teachers who push her and we all do it from a place of love. We all know she can do so much and there is so much power in that little body.
As parents we had a brief moment where we thought our lives were different from this moment forward...are we still going to be able to do “insert all the things”?! The answer is YES!! OBVIOUSLY YES! We never put limitations on what we can/can't do as a family or on the girls. Some things we do might look a little different or take some additional work. We don’t let that stop us, we just figure it out as we go. Let’s be honest kids in general are unpredictable and you are forever changing what you had planned or how you will go about doing things. So really this is no different.
We never say we can’t or that’ll be too tough for a few reasons…1] that's not fair to the girls or to us 2] who are we to say Camilla can't do an activity or won't have fun 3] what kind of example are setting for our girls if we are exclusive and not inclusive to even our own family 4] how boring would life be to just sit and stare at the same four walls all the time 5] it would be such a detriment to not only Camilla's development (physical, emotional, mental) but also Vivienne and Lucy. We just go and do! I think it also helps a bit that Eric and I are both very determined, competitive individuals who thrive on someone telling us we can’t or it’s not possible. You don’t know our capabilities just as we don’t know Camilla’s (or Vivienne and Lucille’s for that matter) and we won’t put any limitations on what can or can’t be accomplished.
I’m going to end this article with a few links to the Cerebral Palsy Foundation. Please ask your questions, don't just stare…I bet 10 times out of 10 people will be so much more receptive to your inquiries then your stares and whispers. Hopefully you can find the links helpful to expand your knowledge of CP, disabilities or maybe give insight to what someone might be working through even if it’s not specifically cerebral palsy.
LINKS:
Insights From Experts:
a collection for videos ranging from what is CP to therapies to communication and other topics.
