Name: Suzanne Bradshaw
Kid’s names and ages: Sophia (12) and Catherine (22 months)
I was born in Southwest Missouri (Houston, then moved to Mtn. Grove when I was 13). I’ve lived in SWMO my entire life, other than about 8 years (3 for college in central Missouri, and 5 of those living out of state). We have lived in Nixa for 10 years.
Describe your typical day.
It’s probably not too different than any other stay at home mom, just with a few more appointments scheduled in. Catherine receives three therapies weekly, and one therapy is twice per month, and has several specialists that she sees. I was a counselor before I went on maternity leave (which has been indefinitely extended), so I guess that has prepared me for having my day arranged by appointments!
I didn’t even know Pediatric Stroke Awareness Month existed before 2016. Which makes sense I suppose, since pediatric stroke did not impact my life at all before September 21, 2015.
On that day, Catherine had a stroke. We didn’t know that at first. She started having seizures while in the doctor’s exam room, and they called for an ambulance to take her to the hospital. After some initial tests that didn’t show another cause, I was signing a consent form so the ER doctor could do a lumbar puncture to see if she had bacterial meningitis. The results from that take time, but they get some initial impressions fairly quickly. Due to this, she was sent to have a CT scan, and then later an MRI. It was the next day we found out the infection had caused a stroke.
I didn’t even know babies could have strokes. I know am not the only one that is surprised by this. Even emergency responders and medical professionals overlook stroke as a possibility in children and teens. But it’s not as uncommon as we think. Which is why it is extremely important to share this information with people, even medical professionals.
Here’s a short video with some helpful information, including signs of stroke: https://www.youtube.com/watch?v=gcfKq9AqTmA&feature=share
When your daughter first suffered from a stroke, where did you turn for help?
Our situation is probably a little different than others, as Catherine’s stroke was caused by an infection, and getting rid of that was the focus at the time. She was already in the hospital when she had the stroke. We found out when the results of her CT scan and MRI came back, both scans were done because of the meningitis. She was extremely sick and had so many other things going on, the stroke wasn’t really at the top of the list. Once she had improved some, we were able to start processing the fact that our baby had a stroke. Since we were still in the hospital, we were never very far from someone we could ask a question (or 20!).
Catherine had regular follow up appointments with her neurologist once she was discharged, and she has several therapists, all of whom are a great help. Personally, I have also found a lot of support and help in online groups and with some of the awesome organizations raising awareness for pediatric stroke.
Catherine is amazing! It’s sometimes hard to see the progress she makes because I see her every day. When I look back at pictures or videos, or posts I’ve made on Facebook, I can see it. Or when one of her therapists come and they see her do something she wasn’t doing the previous week and mention it. It’s like, “oh yeah, she started doing that too!”
She has global developmental delay (which means she is delayed in every area of development that is measured – speech, gross motor skills, fine motor skills, etc.), some vision issues, several sensory issues, and still eats all of her meals through a feeding tube, but she really has come a long way.
We are working on helping her progress in these areas daily. Although she has speech, occupational, and physical therapies weekly, and vision therapy twice per month, every day we do activities to work on the areas in which she is delayed. Fortunately most of them are disguised as play, although she doesn’t always want to do them. She’s a little stubborn! Right now we are working on many things, but some of the bigger things are walking unassisted, managing the sensory issues, and eating by mouth. Feeding issues are tough!
What has most surprised you after your daughter suffered the stroke?
I am really surprised at the things people will say to you about your child and how badly some of those things hurt. People you know, people you don’t know. It doesn’t matter.
I remember reading some posts on Facebook groups I am a member of, and being amazed at the things that were said to the other moms. I truly believe that most of the time, people mean no harm. That being said, just because you think it or are curious, you don’t have to say it!
I recently read a great blog written by a mom whose daughter has a serious skin condition. Something she said really resonated with me. “Yes, adults want to know why because they are curious, maybe even concerned. But the hard truth is that they then choose to ask why immediately because they place their own curiosity above another person’s feelings.” Like she mentions later in the blog, most parents don’t mind educating others on their child’s condition. For the most part, Catherine looks like typical toddler, so we haven’t received a lot of comments, other than being told she’s cute, or has a lot of hair. The ones we do get typically come in regards to her being tube fed.
Now that she’s getting older and should be walking, we are starting to get comments about that. From complete strangers out in public. I don’t always let it upset me, but sometimes it catches you off guard because it’s been a particularly rough day ( I mean, I do have a toddler AND a tween!), or I haven’t had enough sleep, or for whatever reason it might be. Do they really think I am not aware my almost two year old should be walking by now? Like that thought never crossed my mind? I think we all could do a little better at remembering to filter our thoughts before they become words. Even if what we think isn’t necessarily hurtful, is it helpful?
Here’s a link to the blog I mentioned: http://www.courtneywestlake.com/why-question-daughters-appearance/
What would you tell a mother or a family whose child has recently suffered from a stroke?
First, this is scary. The questions start coming, the emotions start surfacing, and you are wondering what the future holds for your child. You will get some information from the doctors, and you will get more information (probably more than you need) when you start searching the internet. That can be scary too.
The important thing to remember is to not put limits on your child from the moment you hear the diagnosis. The truth is, we don’t know what they’ll be doing in the future (which is true of any child). It’s hard to let go of the expectations you had. Reality may differ from how you pictured your child before you knew they had a stroke, but no one has a crystal ball. The brain is amazing and can truly overcome many things (read about neuroplasticity, it’s fascinating!).
Second, it’s okay to feel grief and anger. This truly sucks. The grief will probably pop up at random times, and you won’t always understand it. Same with the anger. It’s also okay to ask for help processing what you are experiencing. Seeking wise counsel from someone not directly affected by the situation (counselor, pastor, etc.) is a good thing. You don’t have to try to figure it all out on your own.
Also, get a notebook and keep it with you. Write it all down – what you’re told by doctors, questions that come to you in the middle of the night, all of it. You’re probably going to get a lot of information that you won’t be able to process all at once, especially in the beginning!
Here are some wonderful organizations to check out:
There are others, as well as diagnosis specific closed groups on Facebook, but these are a great start.
What have you learned about yourself during this journey of helping your daughter?
I’ve learned that I really have no control over this journey. The healing process is slow, and not my idea of slow. Slow in my mind meant a few months! I also learned that I can get caught up in too much research. Researching a problem is a good thing for the most part. You can spend way too much time and energy on it, and either scare yourself because of the stories you find, or find too many therapies and treatments. They may be wonderful treatments, but that doesn’t mean they are right for your child, or your situation, or need to happen right now. You can definitely overschedule your child with therapies and appointments. They still need time to be a kid, and you all still need time to be a family! This is something I struggle with, as I’m always on the hunt for something that will help Catherine heal.