As I finished mowing my lawn this evening, I sighed heavily, looked around, and said, “what’s next?”
See, my next door neighbor and I have an ongoing feud with our lawns. This is not your typical neighbor dispute. In fact, he may not even know it exists. But boy oh boy, am I invested in this fight. Allow me to explain how this all began.
My neighbor’s (let’s call him “Mike”) lawn is beautiful. If I didn’t see him mowing it every other day, I would think he has the turf engineer from our professional baseball team taking care of it. It’s crosshatched, and it’s a vibrant color of green, and there isn’t a single weed to be found.
My lawn, in comparison, looks like we’re about to be foreclosed upon at any moment. No matter what I do, I have dandelions the size of scarecrows sprouting up and unexplained tufts of grass unevenly littering my lawn in a sporadic fashion.
The reason is not mysterious. In fact, it’s rather simple. Mike has time to care about his lawn. I do not.
I have a family. And I don’t for one second blame Mike for not having a family, but my family is more important to me than my lawn. It is important for me to spend time with my wife, who makes me laugh more than any other human being. And it’s important for me to spend time with my 4-year-old son, who is the smartest little boy in the world (I am COMPLETELY unbiased when I say that). And it’s important for me to spend time with my youngest son, who suffered a stroke in utero and needs all the love and care I can provide, but doesn’t need an iota of help smiling.
When E (that adorable little boy to the left) was born, our family went through a traumatic few days. These have all been chronicled before, so I’ll save you the details, but I do want to share what happened following our last couple of discussions with the numerous doctors who attempted to provide us with a sense of what E’s life would be like.
Following the minefield of emotions and the many tears, my wife and I looked at each other, and we said, “what’s next?”. We said that because we had no idea. We said, “what’s next?” because we knew it had to be something, we just didn’t know what.
We did what we could based on the information we had. As you may already know, not much is known about the causes and effects of infant stroke. I mean, the doctors have an IDEA, but there is no instruction manual. Amongst the things we were told were the following:
There is a 50% chance E will have some sort of learning disability. It could be ADD or any number of the ailments that I see students struggle with on a daily basis.
There is a likelihood that the seizures will occur again. When? When we get home? When he turns one? In the middle of class on his first day of elementary school? We’re unsure.
He most likely will not be a professional athlete. FINALLY! Something we can take solace in. Not that he will most likely lack the athleticism to reach the pros, but come on, how many kids without suffering a stroke will accomplish that?
There were plenty of other pieces of information that lacked any concrete picture of what E would be like. And this wasn’t the doctors’ fault; they truly tried to provide us with as much information as they could. The answers are simply unknown. The best piece of information that I walked out of the hospital with was this: It will not get any worse; it is not a disease.
So we came home and we lived on pins and needles through the first couple of months. Every night losing more sleep than we gained. Every tiny noise was a possible seizure. Every moment of silence, another bout of apnea. We took solace in anything E did that was baby-like. Eating was a victory. Not because he struggled with eating, but because it was one less thing we had to worry about.
In the first few months, we were doing everything a parent would normally do to ensure their baby was healthy, but with the constant fear that E would hit a major roadblock. Finally, we snapped out of that mindset and said, “what’s next?”. And for the first time, we said it with meaning. What can we do to make sure that E has every fighting chance to be great? What is next?
We are incredibly lucky to have health insurance that provides E with opportunities that are well beyond what we could possibly afford for him otherwise. He has been able to have constant physical, occupational and speech therapy since he was first diagnosed. We are also fortunate to have a physical and speech therapy service provided by our state at no out of pocket cost. We have appointments coming out of our ears, and at every stage of progress, at every advancement of skills, we ask, “what’s next?”.
It is important to celebrate the victories. No doubt. And I will clap and cheer and hug my little buddy every time he does something he hasn’t done before. But when the embrace is over, it’s time to do it again, or move on to something new. If we linger in the celebration, we become complacent. There is no room for complacency in this game. We have to challenge him, and encourage him, and support him, and realize that there is no finish line. We are never done. So we catch our breath and smile, and then we figure out what’s next.
So, as I looked around my yard, I realized that I needed to dispatch with the growth that had invaded my patio. Not only was it unsightly, it also seemed like it was breeding new hybrids that would eventually attack my house. So I took care of the weeds and the lawn, and the cleanup, and all the various tasks that I am called upon to complete as a neighbor. And I did all those things with the certainty that I was only doing them so I could move on to the important stuff. Like sit down to a meal with my family. Like tuck my boys into bed. Like hang out with my amazing wife. Like take a second to relax so I can prepare for tomorrow. Because tomorrow is not today, and all the accomplishments will be past. Tomorrow I’ll wake up, do all the little things I need to do, and say to myself, “OK, what’s next?”


I really appreciate this post. The bits about “what’s next” and how if you stay in celebration it becomes complacency. Spot on. Which has been a challenge as most people who communicate with me about my son (13 months, RH) only want to talk about how amazing he’s doing. But they never really acknowledge all the work it has taken or the fact that this work will never end. The work has really only begun. And as we move forward, working hard, I just pray things like seizures don’t pop up and interrupt his progress. It can get tiring sometimes — the feelings I really have about having an infant stroke survivor and over-riding them with the ones I’m expected to display publicly.
Thank you KD. Sometimes I almost feel bad because someone will say how great he’s doing at walking, and I’ll downplay it to acknowledge how much work we have yet to do. All they’re really doing is trying to be nice, but I don’t care about being nice. All I care about is helping E progress.
Whatever roadblocks may pop up (be it seizures or anything else) or not, I wish the best for you and your son.
Topher, this is such a beautifully written essay about your wonderful family. Having taken care of a little boy who is a Pediatric Stroke survivor I completely understand when you write, “It is important to celebrate the victories. No doubt. And I will clap and cheer and hug my little buddy every time he does something he hasn’t done before. But when the embrace is over, it’s time to do it again, or move on to something new. If we linger in the celebration, we become complacent.” That is one of the things I find challenging, but necessary. I could tell there are days that he just wanted to “take it easy” like other kids his age, but there is always something to learn, a deadline to reach. Always a “if he doesn’t do this motor skill by this date…it means this.” I know the little guy who I have the pleasure of knowing has a huge support base and is truly loved. His father and family are incredible and do everything in their power to make sure his goals are reached. I can tell that you, Laura, and the rest of your family do the same. I am so glad that I had the chance to read your words and learn more about what you guys face on a daily basis. Let the grass grow and the weeds come. You’ve definitely got your priorities straight.
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Thanks Annie! I am hoping that once E is able to better communicate some of his frustrations or hardships, it will make it easier for us to not feel bad when we push him as hard as we do.
I am not sure if I am replying in the right section or not but my son had a stroke in utero at around 34-36 weeks gestation. We had planned to have a C Section at 39 weeks and ended up going into labor at 38 weeks. I labored at home for most of the day because I knew that if I wasn’t progressing then they would just send me home. We went to the hospital when contractions were about 10 minutes apart. They saw I was in true labor and we went ahead and had our C Section. He was born perfectly healthy with Apgars of 8 and 9. He was a little “grunty” after he was born but my husband and I did skin to skin with him and he was fine. We did notice that his body temp was a little warmer than normal but the nurses said he was fine and had no fever. He roomed in with us the first whole day and night and then the second night I need to get some rest between nursing sessions, so we sent him to the nursery. Around 3 am the nurse brought him in along with NICU Nurse Practioner and said they noticed he had been having seizures and were taking him up to the NICU. My husband and I got ourselves together and went up with him. By the time we got there they had an IV started and were going to do a spinal tap on him to rule out meningitis. The fluid was clear and he didn’t even cry during the procedure. Next they did CT and while on the way to CT they noticed a couple more seizures that affected his breathing. Once he got back from CT they started him on pheno barb. They then took him for an MRI. He also had an EEG and Echo done as well. The neonatologist came in and told us what would be going on the next few days. The neurologist came in and gave us the worst news ever. He told us that he had had a significant stroke on the left side and would have problems with the right sided and would also have cerebral palsy. We were devastated. I kept asking what I did wrong during my pregnancy and no one would tell me how this happened. All we could see is this normal newborn boy. They did numerous blood tests on me and him and everything came back normal. No one could tell us why this happened. My OB said he went thru my chart and there was never a problem with my pregnancy. I am breastfeeding him and he is doing awesome. He has always been a great eater. We have seen the neurologist, physical therapist and his pediatrician on a regular basis. They all say he is doing well. I think my biggest fear is that now is getting a little older that he may start to fall behind. He see the physical therapist once a month because she said she doesn’t see a cause for concern with him.
We have another appointment next week with Z’s PT to have him taped with Kinesio Tape. He is starting to favor his left hand over his right. He will grip things in the right hand if we open it up and put a toy in there. He does grab onto fingers and has a firm grip with both hands though. He has been fitted with thumb supports to bring out his thumbs a bit because he tends to keep them clenched in tight.
We also recently saw another neurologist at our University Hospital and she didn’t see his scans but went by the hospital notes and notes from his neurologist that initially diagnosed him. She paints a much gloomier picture. She says that Z will not have use of his right hand and will walk with a limp and probably have some learning disabilities. It felt like she punched me in the stomach when she said that.
I guess I didn’t know if there were special things you did to help him progress as well as he did. Any help or advice would be greatly appreciated. No one around us has had to deal with something like this and so it would be nice to hear from someone who has been where we are. My OB has been great. He was shocked when he heard about what happened because the statistics say that only 1 in 4000 births and the neurologist said it actually occurs more often than they realize.
Hope to hear from you soon. Feel free to email me if that is ok.
Thanks