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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

 

 

 

 

 

 

 

Maryann May, M.O.M.:  Those are my credentials, M.O.M.

I have been thinking about this for a while now. Over the past few years I have applied for jobs within our hemophilia community and it always seems that the person who gets the job has letters after their name. Upon further investigation, I noticed that every meeting I go to has sessions where each speaker also has letters after their name. I don’t intend to negate the hard work and time that goes into getting letters, I’d simply like to discuss what MY letters mean, what practical experience they have given me.

In my twenty-one years as a “hemo-mom” (and sometimes dad, since I’m a single parent), I have become well-versed in a wide range of professions. Here’s a partial list:

Geneticist

Genetics was one of the first things I learned about when Max was born. I am adopted so I had no family history of hemophilia. This put me on an accelerated course, which I passed easily. Let’s call it a “new-mom-needs-to-know-right-now-how-this-happened” certificate program Nurse

This program took a little longer. The first few years were touch and go, learning the difference between “oh, it’s just a bump” and “we’d better get to the ER; and, of course, everything in between.

I knew I had completed the course the night I called our hemophilia nurse at midnight and she said “I never worry when they tell me it’s Max’s mom, I know you can take care of it.” Max was 7 or 8 at the time. Our nurse would say “You more than passed, I’d give you an A.” I’m a little harder on myself….let’s call it an A-.

IV Specialist Mom's Blog_Maryann

I grew up in New Hampshire, but was living in Connecticut when Max was born.  After about a year, I wanted to move back to my home state, which was much more rural.  I felt I needed to be able to treat him without having to worry about the long drive to the HTC or our local ER. By the time he was 18 months old, I was doing most of his treatments myself. By two years old, he and I were a team, taking care of most infusions without anyone else there to hold him or assist in other ways. “I’ll take an A for this one….I am really good at finding veins.”

Other degrees that I have earned over the years include:

Therapist

“I hate this disease!”

Have any of you ever heard that? How many tears have I cried in secret after boosting his spirits? Need I say more?  I would grade this one pass/fail, as I don’t think there’s a mom out there who feels they can do enough when it comes to soothing their child’s emotional pain.  Let’s just say I passed.

Physical Therapist

In the years before they recommended that Max start prophy, he had a lot of injuries to his ankles and hips. Added to that was the fact that he slouched as a kid because he was always so much taller than his classmates and friends. Injuries and bad posture led to bleeds that caused permanent and painful damage to his joints. I became well-versed in ways to help those pains. What I never became good at was helping him understand the consequences of not taking care of his joints as a child. So, perhaps I didn’t do as well in this course; let’s call it a B-.

Insurance expert

HMO, PPO, POS,out-of-pocket, copay, in network, out of network, Medicaid, Medicare, self pay, home care companies, 340B-pharmacy. Seriously? I just wanted my son to get his million-dollar-a-year meds!! Only once did I make a mistake and ended up owing $2,000 that could have been avoided. He was 2 and I have never done that again.  I’d give myself a B+ for having learned from my costly mistake.

Chemist

Factor. Amicar. Stimate. How many units per kilo? How many kilos is a pound? I will admit, I slacked a little during this class; I often cheated and used the grid the HTC had given me. But, I figure if kids today are allowed to use calculators for math I was okay using the little chart as he grew. I feel like I did pretty well because when it came time for Max to take over it was a fairly painless transition. I’d say I graduated with a solid B.

Advocate

This is a skill I learned early. From standing up for Max in emergency rooms, to teaching his pediatrician about hemophilia, trips to DC to speak to our legislators about healthcare, or asking and demanding his needs be met in schools. I learned early and well how to be assertive without being aggressive. I know that just being a mother is one reason I aced this class, having the support of the hemophilia community is the other. Another “A” on my M.O.M. report card.

Counselor

We hold each other up here in hemo world. We cry together, laugh together and achieve together. Sometimes, we even fail together. But always we listen, suggest, share experience and hope. This is a lesson I have learned to use in every area of my life. Sometimes, I just sit quietly as my “other” friends talk. Sometimes, it’s the hug that makes the difference. I learned that here, among all of you in this wonderful community. I know I passed this course with an A+ because people trust me. What better sign of success is there?

All kidding aside, I actually do have some letters of my own. They are PBT, which is the American Society for Clinical Pathologists’ notation for phlebotomist. Apparently, these letters don’t net me much in the world of hemo jobs and public speaking, but in the real world of hemophilia I know they make a difference.  Those three letters have given me the competence to teach very young kids to self infuse and empower parents with the ability to find those “hidden” veins.  In the real world of hemophilia, most of us would choose a talented phlebotomist over someone else with advanced degrees and a whole alphabet following their name.  It’s something I know I’m really good at, and I am proud that the credentials I earned – the letters that could follow my name if I chose to use them – are valued most by the people that I value most

I have an amazing son. We’ve been experiencing some tough times recently and had some major growing pains.  I know that my M.O.M. training has taught me to do the best I can, even when that best is simply loving him for who he is. I know that my classes in M.O.M. will never be complete and I will keep learning new skills to add to my list. I’m okay with that; it’s been an amazing journey during which I’ve learned more and grown more than I ever imagined.

I believe that the skills I’ve learned while being Max’s M.O.M. have equipped me to succeed at any job. Although they aren’t the letters employers and organizations always want, I feel they are the best ones to have….because these are the letters that help me succeed at life.

Maryann and her 21 year old son, Max, live in New Hampshire.


*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

 

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