The Puddles

Ben’s medical drama started when he decided to show up at 34 weeks in a town hospital without a NICU or the capability to handle an early delivery IF something were to go wrong. AND it all started on a morning where Chris had a funeral and burial ceremony to preside over (there aren’t any substitute pastors for that kind of job). So the church secretary had to drive me to the nearest hospital with a NICU 1 1/2 hours away.

I say all of this to get to the following point . . . Ben doesn’t know what life is like without all of the medical drama. Ainsley was born into this world. She was one month old when we found out that Ben needed open heart surgery. Madie doesn’t remember a time when she wasn’t worried about her little brother.

I am writing this during Dysautonomia Awareness Month. I have been writing and posting about the diagnosis of dysautonomia for all three kids. It is certainly one piece of Ben’s puzzle. But it is still only ONE piece.

Getting diagnosed with dysautonomia has been life changing. It explained so much of the nuances of Ben’s illnesses and symptoms. But it is only ONE piece of the puzzle.

1. Ben was born with congenital heart defects. The main one being an aggressive sub aortic membrane. It took 2 open heart surgeries (2006, 2009) to finally stop it from growing back. The 3rd open heart (2015) was a Ross-Konno Procedure. The cadaver valve that they replaced for Ben’s pulmonary valve started to fail and so a year later (2016) Ben received the Melody valve. His heart is STABLE. Not cured. He still continues to have other problems but so far no intervention is necessary.
2. During Ben’s last two open heart surgery, Ben’s kidney were damaged. This is not uncommon when someone is placed on the heart lung bypass machine. He has had high blood pressure since he was six years old. He continues to have it. He kidneys have some issues architecturally which doesn’t help the situation. Ben is currently in Stage 2 kidney disease. He was stable for a few years, but this year his kidney function has dropped 20%. His renal doctor is working on that one.
3. And finally, we like to call the following a tertiary issue. Ben was born with GI issues. He threw up constantly as a baby. It never really stopped. It just ebbed and flowed. It didn’t really become a problem until he started school. For some reason (insert eye roll here), the school felt uncomfortable having a kindergartener who threw up after lunch. (BTW, we were totally supportive of the school. What teacher wants a kid who vomits in the trash can every day? That’s gross.) So we needed to find out why . . . and that led us down the path to GI. He has severe acid reflux. He’s been on meds since then and we are still working on finding a way to get him off all of the GI meds.

I tell you all of this so that you understand that getting the dysautonomia diagnosis was huge but it doesn’t suddenly cure him. None of the previously stated issues will go away if we keep his dysautonomia under control. BUT keeping his dysautonomia in control helps our doctors focus on his three main issues. Because when the symptom is severe dizziness . . . can you see where the problem is? . . . could be heart. or kidneys. or stomach. Making sure that the dizziness isn’t one of the first three is expensive and time consuming.

For the average kid, the first three issues are enough. But you add in the fact that Ben had dozens of other issues that we couldn’t figure out and had to make countless trips to doctors, clinics, hospitals, etc. Getting lots of testing done. Some simple (x-ray) and some complex (endoscopy). With lots of helpful ideas in between. Like super strict diet with over 20 avoidance foods (gluten, corn, coconut, oranges, apples, and on and on). Or twice a week physical therapy.

And the list of medical drama continues.

Ben has been saddled with enough “crap” for a lifetime. His sisters have also had their fair share. Like did you know that Madie didn’t talk until she was over 3. I mean, she “talked”. I could understand her. But no one else. This girl was so smart that she knew what language was suppose to sound like so she would jabber with starts and stops, inflection, etc. But very few ACTUAL words. Her verbal IQ was tested at 72 and her nonverbal was 125. See the problem?

One family should not have to deal with all of that. But we do. Every.single.day.

I’m lucky and blessed. My husband supports me. My family is always there. I mean ALWAYS. My children’s issues are not terminal (thanks to current medical technology). Their medical problems do not require 24/7 nursing care. They WILL be positive contributing members of society. I have a strong faith.

Lately, there have been people out there is my world who have been particular harsh in their criticism of me. “You aren’t submissive enough to your husband.” “You come across too harsh.” “You are not a team player.” And so much more. It has become so toxic for me.

Some of those same complaints by these people are the strengths that I call upon in times of trouble in our medical world. These attributes that these other men feel are my “downfall” are the very things that make me a good mom.

I refuse to say “yes” to every test or procedure that a doctor asks us to do. I WILL advocate on behalf of my child if that is what is needed. My “team” includes my husband, my children, and other doctors. So my “team” may not equal your “team”. But by God, I am a GREAT team player. Because it takes my entire team to get through all of this.

And I have learned an important lesson in life. It is NOT my job to make a person feel comfortable when our life is anything but. Either you are or you aren’t. I don’t have the time or energy to put a “smile” on my face when I’m having a rough day just to make you feel better. I will admit that knowing that means that there are certain areas where my presence is NOT helpful (like church), so I’ve given up those areas. I’ve also had to give up some close friends because they required too much of my emotional time and energy. It is not my job to call you and tell you what the latest health updates are, etc. My time and energy needs to go to my family. I need people in my life who understand that my life is complicated and are willing to be there in the good and the bad.

It is taken 18 years to come to that conclusion. And a lot of heartache.

But I’ve made it this far. With lots of mistakes. And lots of therapy. I’m at the stage of motherhood where I am training my children to be adults who take care of their own medical needs. So part of that means: learning you medicine list including doses and why you take them, learning how to explain your medical history to the doctor, knowing how to make appointments, sign up for patient portals, etc. etc.

I don’t think I will ever be able to totally give up the title of “Mom to a medically complicated child.” But I’m looking forward to being just a member of the team and not the team leader. And I truly believe I will get there one day.