Katie Franklin – Raising a Toddler with a Stroke Survivor June 17,  2016  7:32am EST

 Katie Franklin’s husband, Morgan, had a stroke nearly two years ago, when their daughter was not yet two years old. Katie now volunteers her time with the American Heart Association/American Stroke Association and loves sharing her experiences with other young families touched by stroke. Find Katie on Twitter @KatieFrank0825.
 
Tell us: In honor of Father’s Day last Sunday, how are the dads affected by stroke in your life beating stroke?

I used to stereotype stroke patients. They were older. They were smokers or had a few unhealthy lifestyle habits. They were probably retired with grown children. This stereotype, I sadly learned firsthand, is nowhere near reality. I never expected my then 37 year-old, physically fit husband to have a stroke. Certainly not in the first two years of marriage – and absolutely not when our daughter was just a few months shy of turning two.

Nearly two years ago when my husband, Morgan, suffered an ischemic stroke (stemming from what we now know were complications from iron deficiency and gluten intolerance) our world, and our young daughter’s world, was drastically altered. It’s challenging enough navigating the post-stroke world as a caregiver. But in addition to being a caregiver for Morgan, I also worried about our marriage, our daughter, Aubree’s, perception of the situation, and how to make sure she wasn’t left behind in the chaos.

Whether you and your partner are navigating the aftermath of a stroke with one toddler, two toddlers, or a handful of elementary school children, it will always be a challenge. It’s hard enough to raise a young child when both parents are healthy, but it can feel like someone is holding your head underwater when you’re taking this task on with someone who is in the first few months of recovering from the beastly attack of a stroke. Luckily, I happen to work in health communications and have been involved with a number of patient-advocacy health campaigns. This experience gave me a good idea as to how to approach the urgent medical situation we were facing. As for how to approach the immediate needs of my daughter, well, that was another story. I knew within the first 24-48 hours that I needed to develop a plan to get her – and us – through this time.

Here are a few things I put into motion to help keep her life and our family as normal as possible.

1. Call in reinforcements – Within the first 24 hours of Morgan’s stroke my sister (who happened to be living with us) and my parents were at my side. While my dad provided me with support and guidance during the day at the hospital, my mom and sister took care of Aubree. They were with us for the first few days and then I thankfully had a friend who works remotely come stay for a few days. Between my sister and friend, our house was cleaned, dinner was provided and Aubree was picked up and cared for after daycare each day. My sister soon became my co-parent, and helped Aubree maintain a sense of normalcy.
2. Communicate with child care providers – At the end of day one of the stroke I told our day care provider what had happened. As a home care provider, she has a decent amount of flexibility for unforeseen circumstances. She made it known that it was fine if we needed to drop off early or pick up late, and was flexible with a handful of different people picking Aubree up as needed. As Aubree had been attending her day care for two years, she was well loved and cared for. To Aubree, it was a safe place with people who comforted her. Aubree was a stressed out toddler and I was told for the first two weeks of the stroke she would cry for her dad. For me, I was relieved she was in a nurturing day time environment to help her get through this time. Overall, we did our best to not change anything about Aubree’s routine.
3. Carve out special one-on-one time – The physical effects of a stroke can be difficult for a young child to see. To them, their parent is a superhero who can do anything. Seeing a parent weakened in such a way causes uncertainty and anxiety. It was important for me to spend some one-on-one time with Aubree both while Morgan was in the hospital and when he came home. I would always be the one to get her ready and take her to day care and would come home from the hospital to eat dinner with her. On the weekends I would make sure we had at least one outing where we were doing something fun, like the farm, park, indoor playground, etc. She needed to know that she was important and that she still had her parent’s attention.
4. Be aware and protective part one – In the first few months after the stroke, Morgan had a short fuse and got overwhelmed quickly. This is not unusual for a stroke survivor. But then in-explainable anger outbursts began. We later determined that he actually had Pseudobulbar Affect (PBA) where he would have sudden anger, usually over very small things. Once diagnosed, he was put on medication and it became well controlled. However, early on it was scary – scary for an adult which means scarier for a child. I was more guarded with Aubree, and if it seemed like he was going to burst I would distract her or have my sister take her out of the room or house. I also decided that I needed to be present until we figured out what was going on. You can’t be afraid to set limits and separate yourself at times.
5. Be aware and protective part two – Speaking of PBA, after the first few outburst I knew something was wrong. I immediately contacted Morgan’s neurologist and she quickly identified the problem and worked with us to get him on a treatment plan. The medication he was put on takes about four weeks to get fully into the system and begin to work properly, but once it did we saw immense improvements. As a caregiver, it’s important to recognize any behavior that isn’t normal. This can be confusing because there are a variety of behavioral changes that come along with a stroke, but being able to distinguish what is typical of someone who has had a stroke and what is clearly atypical and alarming is important. The sooner you can recognize it and seek help the better the outcome.
6. Be open and talk about feelings – We started seeing a therapist early on in Morgan’s journey to recovery. I knew that the first year would be the hardest, but that it was important to discuss how we were both feeling and figure out how to navigate our “new normal.” For us, we needed to get our marriage back on track, raise a daughter, function in our jobs and hopefully expand our family at some point. We talked through our emotional states, solutions to help ease some of the challenges we were each experiencing, and learned how to effectively tackle issues that popped up at home. This was one of the most important activities we took on during Morgan’s recovery because it helped set our path forward and made our family unit stronger.

Six months post-stroke is when we saw a shift in Morgan. His recovery was going well, he was able to change diapers again and he began to be the playful father to Aubree that he was pre-stoke. At eight months post-stroke Morgan had recovered enough through occupational therapy to do Aubree’s hair again. By the one year mark, there was a noticeable difference in our household and I’m pretty sure that to Aubree, this was how her dad always was. Now, at nearly two years post-stroke, I finally feel like we are in a strong, happy place. We are even expanding our family – this fall we will welcome a new baby into the world.

 There will always be lingering effects from the stroke in our marriage and life. This cannot be helped. But we aren’t unique in that. Many marriages go through trials and tribulations. It’s how you handle those circumstance when they arrive that matters. A year and a half ago a wise friend told me “this is going to test you. If you can get through this time then you can get through anything life throws at you.” And now, I would have to agree.