Jacobs medical support
I found my 9-year-old son lying on our bathroom floor. He was using his right foot and pounding on the toilet. He was face down with his left arm in a horrible position. I began to call his name and asked him to get up, thinking he was having a bad dream or something.
I started to rub his back because it seemed he was in a dream or something and I couldn't understand what his responses were. He was mumbling and I couldn't make anything out. I then became more persistent and said "Jacob let's get up and go to bed". He yelled "I CAN'T". He was able to get that out.
I scooped him up and immediately felt his left arm had no response of feeling. Same with the side of his face and he could not stand as his left leg gave out. I yelled to my wife "we need to get him to the hospital". I placed my son in the back of our vehicle, my wife sat with him until we made it to the emergency room.
They thought a seizure, which he never had before. They said an ambulance from Cleveland Rainbow babies Children's hospital was coming for him. My wife went and I followed. I got there and they were already in MRI and I was notified it was a clot in his brain and he had a stroke. I had to sign some papers that no parent should have to sign.
They performed surgery immediately and removed it. A miracle. Jacobs’s brain is recovering and he is able to use his legs and walk and he is able to use his left arm. Little difficulty, but he is improving.
The next steps were to see what caused the clot, we found out his heart is enlarged and he has a rare affliction called restrictive cardiomyopathy. It is fatal unless he receives a heart transplant. I'm so scared. I want to help my son. I want to fix him, and I want him healthy. I am crying right now.
Every night is the same, I am at the hospital till 12:30 a.m. or so and return home to take care of Daisy, his dog and get some sleep. My wife will not leave the hospital. An hour and a half from now will be a full week since this happened. This is the most pain I have ever experienced, but it is nothing compared to what my son is dealing with.
I am trying to be strong for him and it is so hard. I just cry and find the words to ease his mind, but it’s hard. He is so bright and tries to rationalize what he understands about this, but keeps saying he wants to come home. He misses his home, room and his dog Daisy.
He is constantly poked with needles and I pray all of this would just go back to the way things were. We never knew he had any issue. Not a single Doctor, Nurse or Physician ever noticed anything out of the ordinary over 9 years. He played baseball and scored the tying run that morning. We had his favorite ice cream after the game and went on errands.
That evening my wife and him watched Jurassic Park 1 and 2 while I studied in the computer room. They also watched a documentary about how elephants were mistreated at the Circus. After the show he came in around 10 p.m. Saturday night before bed and told me all about it. He went to bed and later that morning it happened.
My family never expected to be in this position and we are desperate. The social worker at our hospital along with a friend suggested we begin a gofundme account, simply because the medical expenses are astronomical. The insurance we have covers only so much and my wife will need to stay home and care for our son. She is an amazing person and has sacrificed so much for our son without a second thought. Now her portion of family income is sacrificed and we have no idea how we are going to get by. My income will have to suffice, and with the medical expenses already accumulating, I am not sure how we are going to do this.
So far Jacob has had a defibrillator implanted and is a 1a urgent level candidate for a heart transplant that will take place within a few months. Hug your children and always say I love you. I am scared of losing my son. He is my pride and joy, my world.
Please help, I don’t know what else to say.
For over two months after his transplant, Jacob and Mom were fortunate enough stay at the Ronald McDonald House next to the hospital in Pittsburgh, PA. We are so grateful for all of the volunteers and employees of the Ronald McDonald House. They made it possible to feel somewhat normal during a very difficult time. After two birthday celebrations and nearly three months, Mom and Jacob came home. Words could not express how Jacob felt when he walked through the door. His bedroom, living room, the kitchen-he couldn’t stop laughing-and he eventually began to cry tears of joy. He was happy to be home!
We enjoyed Thanksgiving and Christmas celebrations with family. Even though my wife and I were still worried, it didn’t matter, Jacob was home and we were happy. After the New Year we began home schooling Jacob. Home instruction started off great and we also had a fantastic tutor that helped oversee several subjects. After two months Jacob seemed unhappy and more irritated with us during assignments. We could not figure it out, but what Jacob said spoke volumes about what we were assuming was the correct way to approach school. Jacob wanted to simply be with his friends. He came right out and said it, “I want to be in school with my friends”. The both of us were beside ourselves, we were holding him back thinking it was the best thing for him, but he needed the school environment. This was a huge dilemma for us, but our boy needed this.
With the assistance of the teachers and staff at Amherst City Schools, he rejoined his class. Everyone was so helpful and I can’t say enough about everyone involved. Most importantly, the children of Amherst City Schools, you all were the reason he wanted to be back in school. Thank you, to every single one of you, we thank you. With all of your help Jacob finished 4th grade and we had a nice and relatively calm summer. We learned to enjoy the calm and uneventful moments together; going for a walk in our neighborhood, getting ice cream, going for a drive with our dog. Just relaxing and talking around a campfire feels like a mini-vacation.
As my wife and I continue to overcome many challenges, we do so knowing all of you helped us when we needed it the most. We have nothing, but gratitude and respect for our family, friends, and community. Many of you we have never met, but please understand you are included in that message. Every single one of you moved mountains on our behalf, and we are eternally thankful. I am still unsure of so much, but I am positive about one thing -I love my son-and I believe every one of you helped make “the good” happen. God willing, your prayers made all of the difference. We are so grateful for your prayers and support during the past year and a half, thank you!
Martin M. Heberling III
He also described it as if he had three towers inside of him and one fell apart like Jenga. He elaborated that the he feels this when family come over and visit. He gets mad at himself when he is not excited to see family. He gets angry inside because he wants to be happy to see his grandfather or grandmother and he doesn’t show it. He feels that the happiness is missing and he feels bad about it.
It hurts me to hear this. I think its his happiness that is left because now he is scared, confused or sad. The fun is taken out of his life for the moment and it is wearing on him. I don’t want him to feel this way. It is hard to hear because he knows he is caught up in it and is unsure of how to deal with it. I wish this burden was off of him and only on me. I don’t want him to suffer this sadness.
After a doctors visit today my wife and Jacob stopped over Grandma Maples house to pick something up. They did not exit the vehicle, and Grandma began to talk with him because she was happy to see him. Jacob tried to show excitement for you today, but it didn’t happen as he wanted. He noticed you were not impressed or may have been a bit disappointed. It made him feel even worse because you noticed it. Jacob said that he felt the same way when my father came over last week.
He almost feels like he is letting loved ones down because he is not super happy. I told him it is ok to not feel 100% all the time. This is another “before” and “after” discussions that really are so common. I love you Jacob, I truly love you bud.
I really didn’t want to post this and I do feel this is way too personal, but please understand when you see Jacob, he is trying desperately to process all of this. He is having a difficult time grasping the emotional aspects of all of this. Personally, I feel this is the most important. Any motor skills or physical issues pale in comparison to his happiness and emotional stability.
The P.M.A. will prevail. I will never give in, for my son, I will never give in.
He asked me to rub his back and no sooner than I started he began to talk about his original heart, God, mother nature, Dr. Goldstein, and the stress he feels before heart biopsies. I will not go into details, but my ten-year-old is talking some really heavy stuff. Something I never imagined he would say. I realize every time we talk that he carries such a heavy burden and I feel so much for him.
Many of the things I think about as a father, he is in fact thinking about himself. The stuff that hurts me and pains me deep inside is weighing on his shoulders as well. We always have a “before” and “after” in our discussions and I try to keep the focus on the positives of “right now”, it works sometimes, but not always. I get schooled by my ten-year-old expressing how hard it is to get heart biopsies and having an immune system that is very challenging.
I get caught up in the good of right now and sometimes I gloss over the precautions we must take at every angle. Call it comfort, call it just trying to make things a bit normal, but what really is normal anyway? This is our normal and I just want him to enjoy life. Its hard keeping him at home when he desperately wants to be with friends at school. Those normalcies are what he craves.
That is painful for my wife and I. We remember the usual school complaints and that’s just it, children complaining. Kids really do love school on the nuances that come along with it. The teacher interactions, the goofing around in class when they are not supposed to, it’s a thrill for them and a right of passage. Listening to an adult, other than your parent, spread some knowledge about subject matter, that may not be interesting to them. Its all special and it all matters to all our children. Even the bonding of friends and the fall outs that come with making friends. My son is missing out and it is really showing. He is tired of the one on one interaction of mom teaching him, he wants to be with friends and teachers who will let him be him.
This will not happen anytime soon and we must make the best of it. I am not sure why I am choosing this update to be the recent update as I have so many others that I have neglected to post. I guess, this is what is really hurting the most as a father. Hearing my son lay some heavy info on me about Science, DNA, God and his original heart. I never imagined this, no parent does.
Jacob is scared and I wish that I could make this all better. I cry sometimes when he talks to me while I rub his back. He doesn’t know, at least he has never let on. I dislike it so much, but I love being with him and having him confide in me. That is what a father does and I love being here for him when he needs to talk. I am blessed to to be able to do this, its painful, but I am so very blessed.
Thank you for these updates.. it's so uplifting to see your sweet sons smile!
Awesome ! News !!!
I'm sure Jacob's drs. can guide you toward a therapist who can help him deal with these issues that are bothering him.
My son had a heart transplant so i know what his parents are going through, he also had a defibrillator Just keep his spirits up and pray
It would be helpful and less stressful if the family would set up "Caring bridge" to post the updates for Jacob... it helps.. My prayers are with the family.. God will watch over him..
I hope he gets his transplant. When my daughter was burned a nurse told me about bureau for children with medical handicaps. They paid a large amount oh her hospital bill .
I will be praying for your son. I am not able to help financially right now as we have a granddaughter who has been in the hospital most of the year. We know what you are going through. God bless you and keep you through this ordeal.
Although everyone's donations are wonderful, I can't help but wonder "if every one of the 2.3 thousand shares donated even $1 (that's one single dollar), this family would not have to stress about money." Come on people, let's help!
Please look into BCMH. I will keep you all in my thoughts. Hope the family can make a full recovery.
I would like to help. Can someone contact me , message on Facebook? Thanks, Mary Ann Laihr God bless!
Lots of Love. XOXOXOXO
Remember our family has "Factor V Leiden" Grandpa Stevens die from it, my mother Rita Benya die from it, my sister Kelley Benya died & my brother Jim Benya ( your grandfather) might of died from it, in April 2006 I was rushed to the hospital & I had 4 blood colts on my lungs & was in the hospital 5 days & have been on coumadin ever since, my son Charlie had blood clots in his legs for about 10 years now & he has been on coumadin ever since, my brother John had to go to the hospital about 2 weeks ago & had a mild stroke & he also went last night but he was all right, he is on Plavix. My daughter Jackie & her daughter Britney both tested positive for it, it runs in the family is all I am telling you so you might want to get your wife & kids tested for it Love all you guys & hope everything turns out ok for you Uncle Charlie
Marty and Kyle my prayers are with you and Jacob. I love you guys, Marty
Marty, prayers go out to you and your family. I am so sorry to hear what happened.