To the Mom Whose Child Just Had Multiple Strokes

Dear old me,

I see you sitting there in that room, reeling from the revelation as you stare at the MRI. “He has experienced multiple strokes in the left hemisphere of his brain… five actually.”

I would like to impart some wisdom of what you have ahead of you.

First of all, you are going to own the next phase of endless weeks and months of rehab and therapies and doctor visits. In fact you will be become so well-versed with medical terminology and the brain, you will be questioned several times if you “are a nurse or something?”

Warning: You are going to fall apart many times into an ugly crying pile of tears and snot and screaming. Try your best to do this privately because no one around you will understand. You will lose your patience. You will feel defeated and lost. You will feel like you have no control over your life and seriously question every choice you make. I promise it will get easier. In the near future you are going to have some of the most amazing moments of pride and overwhelming emotions as you watch him not only meet but knock down each and every limitation you will be warned about: “He will never walk again unaided without a walker or cane,” “He may never regain his eyesight or peripheral vision in the right eye,” “He likely won’t regain his full use of right arm and hand,” “His aphasia will prevent him from communicating for himself.” Smile politely, and then silently ignore each of those recommendations/predictions/pieces of advice. Doctors are advised to give you worst-case scenario, and they have no idea how tough he really is. Honestly, you have no idea how strong he is, but you soon will know! Be patient. God totally has this.

Your brain will be fighting hourly to regulate the grief of the changes and loss and euphoria you are feeling that he is alive. Do not try to tell him over and over everything is going to be OK. I know this is a natural response, but fight the urge. Everything will be OK, but he has to get there in his own time, not on your time.

Study and read up on everything you can get your hands on about empathy. This will be a skill you will need to be adept at. Learning how to sit with him in those dark moments and not rush him through the process. Supporting vs. pushing are very different skills you will need to master. He has to grasp and understand how the stroke(s) have affected him, and he will need time to grieve any losses. Don’t try to fix everything that is hard or a struggle both emotionally and physically. He has to learn to cope, and he has to learn to compensate. This will be very hard for you, and you will receive criticism and guilt for it. Let him cry, allow him a day of rest and no therapy when he tells you “I just can’t today.” Give him grace. Don’t try to convince him he is the same but “just a little different.” He is not the same, and he never will be the same. Inwardly and privately look forward to the future new and improved Ryley. I promise he is there. It will just take time to see it.

Now, for the ugly part you need to prepare for… from the first day you bring him home from residential rehab just know he will begin facing an excruciating and painful reality of all he has lost to the strokes. The depression is inevitable. Get a good counselor as soon as possible. Take what he says seriously. Understand the depression will come and go many times, but each time he will learn a new coping skill or something about himself and will make the future bouts seem easier.

He will get tired easily, really easily. Stroke causes brain fatigue. Teach him this early on so you can both learn how to stay ahead of the fatigue.

Seizures. This is going to start happening unexpectedly about six months post-stroke when things seem to be going smoothly. It’s not rare, it happens, but unfortunately for Ryley, he will continue to battle seizures even three plus years post-stroke, with no end in sight. This will intermittently cause more bouts of depression because it’s one more thing the strokes have taken away — what every teenager looks forward to: driving and independence. Again, be patient. God totally has this.

The first year will be more downs than ups, and they will be unpredictable and leave you feeling like you have been emotionally hit by a truck. Yes, physically he is still here and you will never look at his existence the same. You will never take his or your other children’s lives for granted. Every day is truly a gift when you know how close he came to death.

Early on in this journey expect to question your faith and your religion. It will be a short time because the mere fact he is still alive is enough miracle to snap you right out of “Why God?! Why him!?” Your faith will be tested in many other ways but mostly in patience. Trust me when I say in all of your life no other event will create such a test in patience. All of your relationships, friendships, career and marriage will change and be pushed to the limits. Know you are going to feel incredibly lonely at times, as everyone around you continues on with life and all his friends continue on with their lives and inadvertently leave him behind. This is all going to teach you about what you are really made of. You are going to come out of this a completely different person, weathered and slightly aged but so much wiser and more patient.

It will slow you down. You will learn to stop and be more reflective and considerate. You will eventually mend some of those broken friendships that got lost in the fray early on from your stress. Others will be gone forever and it will turn out to be a blessing in disguise.

Understand you were chosen to mother this amazing human who withstood a gigantic life event at the young age of 15. Your heart will be content to know you have perservered. A silver lining is you will gain some amazing lifelong friendships with other stroke moms through social media.

You will be told more times than you want to accept “how incredibly strong you are” because you won’t feel very strong and will feel like you are hiding a huge secret. I know you won’t believe it or feel it. You will often just think to yourself, “I’m just doing what I’m supposed to do!” Accept the compliments! You totally deserve them! Accept the empathy and strength others want to pass along to you. I beg you to take those friends up on getting out of the house and doing something for yourself. The benefits will pay off from clearing your head for a couple hours. Find a song that speaks to you, listen to it often, in the car, at work, on your headphones. Blast it and sing and cry along to it. (“Oceans” by Hillsong United will be your song.) When things begin to get better, that song will become your anthem for life and mean something completely different throughout the journey.

He is going to be OK, Mom. He will eventually get a job, have a girlfriend, break a heart or two, graduate high school and go to college, and he will have future ideas and aspirations of sharing his story and journey. He will be OK. In fact, he will be better than OK. He will actually become a better and a more improved Ryley than the one you had hoped for and make you prouder than you ever would have imagined! Again, be patient. God totally has this, and the journey is still not over. It never really will be. Hold tight to your faith.

Yours truly,

You from the future

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Thinkstock photo by saiyood