A Glimpse at the Possible

This week we took Lil' Bit in for her routine echo-cardiogram.  The doctor was generally pleased with her growth and development.   The echo looked good--said her heart was very photogenic!  Her pressures are still roughly the same they have been for the past year.  It's frustrating that they have not gone down, but it's excellent that they haven't gone up.  In addition, the secondary characteristics they look at to see if anything is amiss all looked good as well.  Dr. S even downgraded her severity from "moderate" to "mild-to-moderate."  Not much, but we'll take it.  She'll go back in March for another echo and then he'll decide when to do a heart cath.  Depending on the results of the heart cath, they'll decide if they can start to ween her off the meds to see whether she can maintain her pressures with fewer meds.  Wouldn't that be nice!  Dr. S. also said we could expect her to have a pretty normal childhood.  That was wonderful news and we left feeling pretty good.

But the best part of the week was the surprise call we got on Friday from Dr. S.  He had spoken with Dr. T, who had done Lil' Bit's heart cath and who had several other patients also missing a pulmonary artery.  There was one woman they had been following for a while who was now 33.  She had both an absent left pulmonary artery and a VSD, making her comparison to Lil' Bit pretty close.  She also had some other issues Lil' Bit doesn't have for which she had needed surgery, but in terms of problems from the VSD repair and absent pulmonary artery, she had had none.  And the best part--she currently has an 8-month-old baby!  Although we had previously been hopeful for her future when we heard of a very active and athletic 13-year-old who had a missing pulmonary artery, to find out that, at this point, nothing is off the table for Lil' Bit's future is huge.  Getting this glimpse at the possible makes it so much easier to keep trudging through the complicated med schedule every day.  Lil' Bit is an amazing kid.  And, if she wants, she may get the chance to be an amazing mom.  Yes, it probably sounds crazy to be worrying and thinking about that for a kid who isn't quite two.  But to me, it puts her one step closer to normal; one step closer to being able to do anything she wants.  To me, it means the world.

Adjustments in Perspective

Last week, it occurred to me that I had never researched Lil' Bit's pulmonary hypertension.  When I found out she only had one pulmonary artery, I scoured the web for information.  But, somehow, when the doctor said she had increased pressure in her heart and labeled it "pulmonary hypertension," it did not occur to me that it was A CONDITION.  Imagine my surprise when I found gobs of information, including a Pulmonary Hypertension Association, which included (wonderful!) resources for parents of kids who have it.  Sadly, one of the things I discovered is that they don't know much.  Part of the problem is that the research generally involves adults, making it hard to know if the same will hold true for children.  In addition, research and treatment are pretty new.  Thus, much of the information still talks about a 2-3 year morbidity rate for adults who leave the condition untreated.  It is extremely hard to find any information about morbidity rates for those receiving treatment, let alone for children receiving treatment.  But, even in my frustration at not finding all of the information I had been hoping to find, I did learn a few things.

First, I learned that Lil' Bit had a chronic condition.  I know this seems like a "well duh," but actually it was was hard to accept.  Back when we were told she needed surgery, we assumed that once she had the surgery, she would be fixed.  Then, we ended up having to do meds, which we thought would be for one year.  Now it looks more like two.  The truth is, we don't know how long she'll need the meds.  It may be forever.  And so, I have decided to treat it like it will be forever.  If I tell myself that she will need meds 6 times a day for the rest of her life, I can quit waiting for the next disappointment.  I can figure out how to schedule my life so that I can do things and get out of the house instead of telling myself that, if I just hold out until X date, things will get easier.  If she ends up getting off meds, or has fewer, BONUS.  But, if not, I'm not stuck in a holding pattern.

Second, I learned that we were doing a good job.  When I went to my doctor to get my anti-depressants, since he is also Lil' Bit's GP, I asked him if we were doing a good job with her.  I certainly thought we were, but I had no frame of reference.  I have never raised a "regular" child, let alone one with special needs.  I could tell myself that we were doing well all I wanted, but it would not calm me.  I needed someone who knew what he was talking about to tell me so.  I can believe an expert.  What he told me made me cry.  He said we were doing "phenomenal."  He said that when he had other people bring in children who had semi-serious conditions, he would hold us out as example parents.  Me.  An example parent.  Huh.  We thought we were failing at normal.  Turns out, we're exceeding at very hard.  Which leads me to...

Third, what we are doing is very hard.  We talked with Lil' Bit's cardiologist recently about what he thought Lil' Bit's long-term care needs would be in an effort to factor that in to our consideration of whether we would have additional children.  We also talked to him about the increased risk of additional children having heart issues.  Like Dr. R, Dr. S was extremely complimentary on how we are doing.  He acknowledged that the social aspects of giving meds to anyone, let alone a child, 6 times a day is difficult and admitted that he had a hard time taking one med once a day for 10 days.  He said he understood that he made recommendations and wanted people to follow them, but he also understood that it was difficult to do so, and that we deserved a medal for doing as well as we were.

Fourth, I learned that what we are doing is very hard.  This lesson is listed twice because it cannot be over emphasized.  I have to stop comparing myself to parents with children who had no or few health issues.  I also have to stop comparing myself to parents whose children have more difficult conditions than mine.  You know, I think the lesson here is to stop comparing myself.  But, I digress.  I need to, and must, allow myself to acknowledge that what I am doing is not easy.  Only by doing so will I schedule time for my own self-care.  Otherwise, I will just try to power through because I should be able to.  If it's hard, there is no reason to power through.  I can give myself permission to be tired and exhausted.  These are reasonable feelings when dealing with "something hard" and allow me to take time for me.  

With these lessons, I have two choices.  I can accept them, or I can ignore them.  I have opted for the former and am working to adjust my perspective to the "new normal."  I don't know how bad Lil' Bit's condition will ultimately be, so I am going to enjoy every day I have with her.  I don't know how long things will be difficult, so I will make time for me in the craziness that exists instead of waiting for the calm that may never be.  And, I don't know what it's like to parent any other child, so I won't try; I will just work on being the best parent I can be to the child I have.  If I can do those three things, it will be enough.