Some days I sit around wondering if I can ask my doctor to write me a valid prescription for a chill-pill.
So let’s talk logic:
1. I know that when someone comments on their own child, and their relief that they have a healthy child, that is not a direct stab at my child.
2. I know that when someone is excited about all of the things their child can do, and how big their child is getting, that is not a direct stab at my child.
3. I know that when I read things on the internet about people who are terrified that they may receive a diagnosis or that they are devastated that their baby’s long bones are not growing and that something may be wrong, that is not a direct stab at my child.
Now let’s talk reality:
This stuff bothers the crap out of me – it makes me cry – and it keeps me awake at night sometimes.
Ever since I started this blog – and started documenting my journey with Asher a year ago through a pregnancy app, dozens of mom’s to be have reached out to me because they received the news that their pregnancy was not going as expected – their baby’s long bones were behind – and they wanted advice, guidance, reassurance etc. And let me tell you – I LOVE it when i hear from these moms, under most circumstances.
I know what it is like to feel lost – and I know what it is like to have negative Nancy doctors who are telling you absolute worst case scenario, and giving you vary little hope. I have also had some doctors admit that I know more about dwarfism than they ever will, because let’s be honest – it is rare, and it is not something all doctors encounter during their careers. Especially since Asher does not have Achondroplasia. And I have spent the past year of my life researching everything there is out there to read about dwarfism both in utero, at various stages or pregnancy, at delivery, and post natal. Am I an expert – no, not by the farthest stretch of the imagination. But can I be helpful – yes. I’ve been there, I know how it progressed with Asher, during my pregnancy, what was important, what we needed to look for, and most importantly – that I now have a happy, healthy 9 month old little nugget who I love more than life itself.
When I can’t handle it – is when these mom’s are reaching out to me to try to provide some assurance that their case is different than mine – and that their baby couldn’t possibly have dwarfism (this one does not happen often). Or they reach out to me and want guidance, and they say they are 100% ok with their child having dwarfism, and then when they find out later that their child does not have dwarfism, seeing their "Thank God they ruled out dwarfism!" posts (this one happens a lot).
My heart gets crushed – every time. And I get angry.
I know that these moms are simply relieved that their babies are healthy, and that they are ‘normal’. And I know how I felt initially when we found out Asher wasn’t growing as expected – so I know it isn’t fair for me to get so angry. Logically – I know this. But my mama heart cannot handle to actually see and hear other women celebrating the fact that their child is not going to be like mine. And this isn’t limited to dwarfism – since I know how moms of children with special needs or a special diagnosis feel. When you post something on the internet – you never know who is going to read it. Your post celebrating the fact that you are so unbelievably happy that your child does not have Down Syndrome may be read by a mom of a beautiful child who does have Down Syndrome – and she is having to see you celebrate the fact that your child won’t be like hers – her perfect, sweet, beautiful child that she loves more than life itself, and who she couldn’t imagine being any other way.
Now maybe it is just me – maybe this doesn’t bother other moms as much as it bothers me. Or maybe it bothers all of them. I don’t know. And maybe in time it won’t bother me – or maybe in time it will bother me even more as I watch my miraculous child grow into this incredible person.
So here is where I take my lumps and try to make my heart and my brain see a little bit more eye to eye. Will I celebrate everything my friend’s babies learn to do, their milestones, their achievements, their health – YES! But please know that I will do this outside of the realm of comparisons. I’m not going to compare what they can do vs. what Asher can do – and I ask, no I beg, them to not try to do that either. And while I can ask this of my friends and family – I accept that I cannot control the masses on the world wide web (oh, if only I could). But I can plead with those who find this blog during their search to understand dwarfism, who may be facing that possibility with their own child – to please be wary of the celebration of normalcy – and find a way to do so that does not insinuate that having a child like mine would have been earth shattering. Because let me tell you – he is nothing, if not the greatest blessing that I have ever been given.