Oliver had his cardiology appointment this morning.  We recently switched cardiologists because the one we have been using is seriously ill and taking a leave of absence.  We decided to head back to Georgetown to see the doctor who helped Oliver right after he was born.  

Oli had a spent 2 weeks in the NICU after he was born.  He had some serious heart and lunch problems.  We thought we were going to lose him during those first few days.  It was horrible.  Then we met this wonderful cardiologist who reassured us and helped our little boy get strong.  

We hadn't seen her since Oliver was about 4 months old, so it was lovely to catch her up on both Waverly & Oliver.  She was quite surprised that the little baby who lost so much weight in the hospital grew up to be such a BIG boy.  She is very familiar with MPS, but has more experience with the other types.  Oliver shook her hand as soon as she came into our office and at the completion of the exam he gave her a high-five and a hug.  The most difficult parts of the appointments are the EKG and ECHO.  Oliver sat on my lap, while we watched a very old *tape* of Sesame Street.  He would intermittently, but all in all did a wonderful job.  I snapped this photo of him after the tests, while we were waiting to see the doctor to discuss his results.  He was given an A- from the doctor.  Everything looked great, just a thickening of the Mitral Valve.  The valve is functioning normally and unfortunately this is a common symptom of MPS.

As we were leaving her office, she commented on how well I am doing with the kids.  She thought I showed so much patience and love.  (I think we were having a good day, since it was just Oliver and I.  It is always easier with just one.  Wait until she sees me with both of the kids.  Frantic mom here!)  I told her that the diagnosis brought a sense of freedom for our family.  It is a horrible diagnosis, but we now know what is going to happen and why.  Expectations were shifted, frustration diminished, and an entirely new perspective took over.  Oliver is lucky being the second child.  Since he was diagnosed at such a young age, he has been parented as a child with Sanfilippo since he was 15 months old.  Poor Waverly had to wait until she was nearly 4.5 years old.  She was parented by 2 very scared and frustrated parents, who wanted so desperately for her to be like the other kids her age.  I wish I could go back and have those years back.  I would do things very differently.  I would have taken time to enjoy who she was in the moment and not who I thought she should be.


Laura said…
I know exactly what you mean, Shannon. But we did what we thought was right for our girls at the time. I also wish I could take back some of my frustrated moments pre-diagnosis. I have mostly forgiven myself and moved on. I hope you have, too. I can assure you that I have more to be forgiven for than you do!!!!!
I try to channel your optimism and patience these days when I am overwhelmed. You are a wonderful mother and I am so glad I know you.
erin heiser said…
Shannon, Waverly and Oliver are so lucky to have you and Matt as parents! I agree with what Laura said above - forgiving yourself and moving on is all you can do. I know you can move forward knowing that you've always tried your best and it is so obvious the way you love your children fully. You are human and you have been given an inhuman task to endure. Grace, grace, grace, grace, grace.

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