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

The thing about kids is that they grow up  they move on and make their own choices.

That’s what Max did – he moved on and made his own choices. That’s not to say he has always made GOOD choices. But what would the point of all the years of teaching him to be independent mean if I still intervened when it came time for him to make decisions for himself? So Max grew up and moved on, which also meant he moved away. Two thousand long miles away from his family, his friends, his treatment center, and me.

I hadn’t seen my son in six months when we had our reunion. I was in Tampa, Florida for the Hemophilia Federation of America’s annual Symposium and he was in Delray Beach, about three hours south.  He got on a train and I hugged him for what in my mind, felt like the first time in forever. Being the typical mother of a child with a chronic condition, I gave him the “mom appraisal” as he walked across the platform and found a plethora of bumps, bruises, scars and the ever telling limp from his fused left ankle.  The thing that alarmed me the most though, was the red, swollen right calf and ankle. Was it a rash or a bleed? Was it both?

That was on a Wednesday afternoon.  The next day we took a cab to the nearby hospital emergency room where he was seen and put on IV antibiotics. The doctor was pleasant enough, but we were faced with giving him the usual lesson in hemophilia 101. After a trip to the hospital pharmacy in a cute little shuttle, we got in a cab, and headed back to Symposium with strict instructions to return to the ER if the swelling or pain got worse.  Friday morning came and sure enough the leg was bigger, redder, and much worse. A hemophilia doc that was attending Symposium took one look at it and told us to go to the ER. Back in a cab, back to the hospital, back to the emergency room.  After another IV, an ultrasound, more fluids and another teaching moment to the hospital staff, the decision was made to admit him.

By the time I was ready to leave the hospital, it was near midnight and my phone battery (and my own battery) had drained to almost nothing. I had hit a point that I am so familiar with — the point where after hours and days of being on high alert I can’t make the simplest of decisions. I called a friend and asked for help. He sent me a cab that delivered me back to the hotel. As I walked into the lobby my friend handed me a sandwich and told me to go to bed. Moms Blog_Maryann

On Saturday, I was scheduled to speak on a panel about, of all things, caregiver burnout. Seriously? I awoke to texts and phone calls from many of my friends asking how Max was, telling me not to worry about the session and asking what they could do. The one thing I knew for sure was that I needed to be in that session, as much for me as for anyone. I walked over to the hospital for a quick visit and to see if I could talk to a doctor. I did, and as so often happens, I left with no answers. All I really needed to know was if I should reschedule my travel back home or if I needed to extend my time in Florida.  I made it back to the hotel for the panel and true to form, I cried and got hugs. I knew coming back for the panel had been the right thing to do.

When I was ready to go back to the hospital there was a tornado warning and it was pretty rainy.  Once again, my hemophilia family intervened. Someone’s mom who lives in Florida drove me and another friend over to the hospital with instructions to call when we wanted to come back to the meeting. He stayed long enough to hear the conversation with the doc and left us.

The conversation with the doctor went like this:

“We’ve taken him off the antibiotics; we don’t think there’s an infection. The hematologist looked at him and doesn’t think its compartment syndrome or a bleed.”

I asked, “Umm, so why is he here? And why is his left leg so red and swollen?”

Pause…no response.

“Never mind, just discharge him please.” I replied.  “We’ll go to the doc back home.”

There comes a point in the life of most people who live with chronic illness when you realize that you need to move on. Those moments when you know that nothing you say will deliver a result and it’s time to move on to people that DO understand. I took Max back to the hotel, to the people who love and understand us.

On Sunday we flew home. Max made some phone calls on Monday and by Wednesday, a week after our mother-son reunion, we had a reunion with his hemophilia nurse and a full day of x-rays, blood tests, and visits with three different doctors. This time, though, we left with answers and solutions.

This latest challenge has been a good reminder to know I’m not alone. I know that doing a quick visual rundown of our kids is just part of life  – whether it’s when they get off the bus from a day at school or it’s the first time we see them in months. We have a mental catalog of “what to do if” that is just a part of our lives. I know that for those of us in the hemophilia community, sometimes a reunion means asking for help and time from others while we are in hospitals. I know those reunions may be challenging and scary but I’ll take challenging and scary over separation by distance when I know something is wrong.

I also know that no matter how old my baby gets, I never ever have to do any of this alone. We move on.  We make choices.  But in this community we have each other to hold us together to weather any storm.

Maryann lives in New Hampshire and her 21 year old son, Max, has put his gift of independence to good use and is living away from Mom.

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*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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