The good, the bad, and the ugly

This Friday, I had the pleasure of meeting with a Mom whose son has also been diagnosed with PBD.  With a diagnosis this rare, it truly is a blessing to find someone who is slightly further on this journey than we are.  She will hopefully be someone who helps me navigate this complicated world of specialists, treatments, and therapies.  More importantly, for 2 and half hours, she served as my sounding board, allowing me to say so many things that had been pent up in my mind, but which I was too afraid to say.  I was afraid to say them for so many reasons – fear of judgment, fear of misunderstanding, and fear of it making it real….

It was only when I found someone who had traveled the same road that I’m traveling could I let my thoughts be known, because trust me, they are unpleasant.

They’re devastating thoughts like “maybe my husband and I weren’t meant to be together.”  Before Max, I had always thought fate had brought Todd and I together and no matter what, we were 2 puzzle pieces that just naturally fit together.  Nothing can make you question fate like knowing that when you come together, 25% of the time you make sick babies.  These are sad, dark thoughts – and these are thoughts that she did not judge me for. 

Now, please don’t take this as me not loving Todd, because he is truly my everything, but I’m telling you to show you how situations like this can truly torture you from the inside out. 

We also talked about how there are good days, there are bad days, and then there are the ugly days. 

On the good days, I can rationally see God’s plan and realize that he purposely sent Max to our strong and loving family in order to give Max the best life possible.  But then there are the bad days – these are the days where you question why a disorder like this would exist at all.  How would it ever be fair to strip away a normal life from a helpless child?  Then there are the ugly days, which are filled with pity, jealousy, and anger - pity for myself and having to watch my child suffer and the general unfairness of it all – jealousy of all those mothers with little boys who get to live normal lives and anger at their lack of understanding and perspective.  These are the days where I hate myself for not being stronger.  

Do you know how amazing it is to talk someone through these thoughts and to know there is no judgment – only understanding?  She has been there and truly understands the pain.  Hopefully, I provided her with a fraction of the comfort she provided me.  

Also, I wanted to mention how much I truly appreciated everyone's notes and comments following Max's diagnosis.  I read each and every one - multiple times - because it never gets old hearing people tell you how cute your kid is, no matter what the situation, right? 

Speaking of which, check out this stud: