A Mama's Encouragement-My Son is a Survivor of Pediatric Stroke

Photo Credit: Ashley Ridder and Caitlin Olson

It is with great joy that I welcome the first guest contributor to my Acreage of Grace today. Alysha is a lot of things, but to me, she will always be my little sister. God has given her insight into the world of pediatric strokes through her son Carter and she is great at providing encouragement and resources for other mama’s who may be going through something similar.

A Mama’s Encouragement

My Son is a Survivor of Pediatric Stroke

By Alysha

I’m a mother of two boys. I’m a happily married wife. I’m a Christian. I’m a sister. I’m a daughter. I’m an auntie. I’m a friend. I’m a registered nurse. And I’m the mother of an in utero stroke survivor. Those are all titles that I am blessed to hold, that I would say define who I am. May is Pediatric Stroke Awareness Month, so I tend to fixate on the pediatric stroke portion of my life, which is a huge part of who I am.

Realistically, I go in phases where I am at peace with the way things are, and then I go through other phases where I have a pity party for my sweet boy who has challenges that many other kids don’t have. I need to stop that. He can run, he can jump, he can climb, he can make me laugh, he can harass his puppy Mabel, he can play with his baby brother, he can spell his name, he can (sort of) write his name, he can give the best hugs/kisses…he makes me so proud!

Let me back up and introduce you to Carter. Carter is my 5 year-old son who suffered an in utero stroke, and now has the following diagnoses associated with his condition: right sided hemiplegic cerebral palsy, epilepsy, developmental delays, periventricular leukomalacia, hyperopia, white matter volume loss in the brain, and moderate intellectual disabilities. Do those things define who he is? They contribute to who he is for sure, but they do not define who he is! If you had a chance to meet or get to know Carter, you would not even see most of those things. What you would see is a handsome child of God who has massive amounts of energy, over the top determination and perseverance, the most loving heart, the greatest sense of humor, a love for Jesus and prayer, and a twinkle in his eye when he looks at (and pesters) his baby brother, Silas (13 months).

At a recent visit to Carter’s pediatric comprehensive development specialist, it was recommended by two specialists that Carter become involved in sports or community activities. They said that this would eventually help him to develop more social skills, as well as physical “therapy” and would possibly eliminate the need for so much actual clinical therapy. Carter is so excited that his first t-ball game is this week, and has really been enjoying practices. He is learning (with the help from his amazing physical therapist) to play one handed ball. This is similar to the famous Jim Abbot, who was a MLB player who was born without a right hand. (http://www.jimabbott.net/biography.html?submenuheader=0). Carter keeps his glove on lefty (his strong hand), and quickly takes his glove off when he gets a ball, then throwing the ball with his left hand. It is an unexplainable feeling as his mother to see how well he is doing with this, and how proud it makes me! Carter will also start AYSO soccer in the fall, and he’s very proud to tell people who his coach is….his mommy!

Carter-bug 2013

As a special needs parent, I have found that finding a support system is essential for everyday survival. I have an amazingly supportive husband now who would give anything to make things easier for Carter, and our family. He makes sacrifices for us, and I am so blessed to go through the journey of raising Carter with him by my side. Our parents, grandparents and siblings have a special/accepting love for Carter which is such a comfort to me, as his mother. My biggest support, though, comes through prayer! What a beautiful gift that I can find comfort and decreased anxiety from talking to God and trying to listen to his response!

Finally my other “family” is my CHASA (Children’s Hemiplegia and Stroke Association) family. Although we have tremendous support from our families, it is still impossible for them to deeply understand some of the struggles we have, or answer some of the “what if’s” that we encounter on a daily basis. I have talked with several other pediatric stroke mamas who are marching through life with similar struggles, joys, and triumphs as we are; and they can surely relate. I also feel so blessed to share my knowledge and emotion with mamas of newly diagnosed babies. These mamas of CHASA are inspiring to me, and provide me with such encouragement in times of doubt. They understand the crushed feeling I encounter as we walk up to a playground, knowing that Carter will struggle with some of the equipment. They understand the emotions that I feel when Carter wants to ride his bike like the rest of his friends, but needs an adaptive bike. They understand that when you get a power wheels John Deere gator for your child’s birthday, you must have it custom made to move the gas pedal to the left side instead of the right. They understand that at times I purposefully avoid certain situations where I know a 45 minute tantrum is about to happen due to frustration.

Carter May 2016

I first stumbled upon CHASA in 2012. Carter was born March 31, 2011 via emergency c-section at 35 weeks. After his birth, to make a long story short, he wasn’t meeting many developmental milestones, and hardly used his right hand, instead kept it curled in a little ball down by his side. After much persistence, and telling medical professionals my gut feeling, we started therapies, and then had an MRI done. Carter was diagnosed with his in utero stroke when he was 11 months old. Carter saw many different specialists in a couple month span, and we got some answers. I was bound and determined that I would do ANYTHING to make life more “normal” and easier for him. CHASA has resources on their webpage http://chasa.org/ for how to apply for financial assistance, where to get adaptive equipment, statistics on pediatric strokes, the next steps, etc. I found so much useful information on their site and some of the stories on the website helped me get through some dark days! In utero strokes happen in 1:2800 live births. Most of those are ischemic, meaning due to lack of oxygen. In Carter’s case, he was born with a true knot in his umbilical cord, and it is suspected that this contributed to his stroke, as well as my preeclampsia issues during pregnancy.

I want to make others aware that pediatric stroke is a real thing, and it does happen. May is Pediatric Stroke awareness month and purple is the designated pediatric stroke color, so please feel free to join me in wearing purple for the remainder of May, and anytime you feel like supporting Carter-bug. We have been honored to receive Pediatric Stroke Month proclamations every year since May, 2012 from the governor of the State of Nebraska.

Carter was presented the 2013 Proclamation at the Nebraska State Capitol by Governor Dave Heineman

Carter has taught me several things in his 1,882 days of his life so far:

1) Impossible is not a real thing…you can overcome anything if you believe, and have the support to accomplish it.

2) It is ok to be “different”!! Carter has so many friends, especially older kids who take him in and love to play with him. Everyone knows Carter, too!

3) Having role models is so influential to kids, and helps them dream big from a young age. Carter’s biggest role models are his daddy, who is a Head Football Coach of a State Championship 2015 high school team; and a star linebacker/fullback on the team. He even dressed up as this specific player (#38) for Halloween (custom made etsy jersey and all!). And a great kid he is for Carter to look up to!

Tyler (coach), Carter (football play), Alysha (cheerleader) and Silas (football) Halloween 2015

4) Carter taught me how to be a mommy, and I try every day to be the best mommy possible to him. I never imagined loving a little person so much. Watching him develop is the one thing in my life that makes me the most proud!

5) God has a perfect plan for each individual, despite how devastating some days feel. (For example, the day of Carter’s diagnosis). For one.single.second…I cannot imagine life without Carter. His neurologist told me that if his stroke would have occurred in the first or second trimester, we would have lost him. God is good, all the time!

###

If you, or someone you know, would like more information regarding Pediatric Stroke or have any questions or encouragements for Alysha, please feel free to email me at acreageofgrace@gmail.com.