Jacob Update

I have struggled with writing this post, but as always for me writing is how I cope and so I will write and share because I need to stop crying.

Three weeks ago Jacob went for his physical.  My goal was to talk about some of his learning challenges and to talk about seeing a specialist for some educational evaluations.  The appointment changed in an instant when the Dr listened intently to Jacob's heart for more than 3 minutes.  I knew in my mommy gut something was wrong, but this wasn't our typical pediatrician  we were seeing and so I assumed the doctor was maybe just being extra cautious.  Unfortunately, after a long listen the doctor explained that Jacob had a significant heart murmur and that we needed to see a cardiologist.  As I panicked, and tried to hold it together for Jacob, the receptionist at the desk reassured me that he would get hold of the Cardiologist ASAP and we would have answers.

My boys has struggled through so much this year:

• Lyme Disease
• Significant learning issues
• Drastic changes in his behavior
• Changes in his ability to write and perform small motor tasks

How is it possible that there was now a problem with his heart?

Within 48 hours we were in the Cardiologists office and and EKG and an Echocardiogram were performed and it was determined that Jacob has a Mitro valve prolapse along with a bulge in his aortic root.  Putting these 2 issues together there is a strong likelihood that Jacob will be dealing with a diagnosis of Marfan Syndrome.  The Dr gave us names of Genetic Cardiologists to see in Boston or NYC and said that this was the next step for us.  We need to have a definitive diagnosis made so that we can know what to expect long term for Jacob, and that we needed a specific type of specialist to help with the diagnosis.  

Jacob, an avid football player, was told in the office that there would be no more contact sports because if he is hit in his heart it could be fatal or he could require immediate heart surgery.  That was all Jacob heard and all I heard because Jacob lives all year to get to football season.  He is not the best football player on the planet, but it is where he feels like part of a team and it is where he is the most alive.  With all of his struggles it was one more thing that he was losing.

As we left the office I carried my sobbing 9 year old to the car as I tried my best to hold back my tears.  My mom was with us, and I think it may have been one of the hardest moments for the 2 of us.  She could not comfort me, and she could not help Jacob.  We were both devastated.

I have done my best to simply ignore this potential new challenge as honestly it is putting me over my limits.  I don't know how to cope with one more challenge.  Between school challenges for all 3 boys, IEP planning, and daily struggles of life, this was becoming too much to juggle.

I told Jacob's teacher and the school nurse of the new diagnosis as I dropped him off at school and the limitations on Jacob for contact sports and then I just knuckled down and pushed ahead.

Having children with so much going on, and balancing it all is lonely and alienating.  I am fighting with the insurance company to get permission to go to Boston.  I am working to ensure that Jacob is safe and feels ok about not playing football.  I am finding child care because our summer plans changed after the heart issues were found.

All week I have cried tears of sadness for another thing on my plate.

I have worked and balanced phone calls and texts as I have had a total of 10 people in and out of the house to care for my 3 children this week.  I have worked to ensure that my school functions and the teachers felt supported and the children laughed all while I wanted to simply burrow and hold my boys and feel like one day it would all be ok again.

As I have finally read more about Marfan syndrome my best guess is that this will be Jacob's diagnosis in Boston.  It explains a lot of his struggles but not his educational struggles.  We will cope and move forward because that is the only choice we have.  He will feel love and connection but I wish he could feel it now, instead of having to rebuild his connections.  He is moving forward as he finds his way at the YMCA camp which has welcomed him with open arms.

Over time this too will just become our new normal and we will move forward, and my hope is that in Boston they will explain a plan of action which will help Jacob and possibly allow him to play sports that create such a strong outlet for him physically.  He will likely not be allowed to play football, but if he can find another sport, another outlet than he too will move forward.