A little piece of heaven

This was probably the hardest lesson that I’ve learned in this journey, and I think it may arguably be the most important one.

When Nathan was 2 weeks old, he started crying uncontrollably, day and night. It was a shrill, painful scream that would break your heart. We took him to the doctor who sent us to the neurosurgeon. The neurosurgeon didn’t look at any of the documentation, didn’t examine Nathan, and told us he was fine and to come back in 3 months for an MRI. 4 agonizing months later, the MRI was finally done which proved that Nathan had terrible hydrocephalus. A shunt was finally placed and he was instantly a different child.

A few days after he came home with the shunt, he started running fevers and vomiting and I took him back to the same neurosurgeon. Once again the man didn’t examine him and sent us home saying he hadn’t had a case of shunt infection in 3 years and Nathan wouldn’t be the first. 2 more visits and one ER visit later, the same neurosurgeon still claimed Nathan did NOT have a shunt infection. 6 weeks of Nathan burning with fevers and vomiting later, I finally took him to ER and said I wouldn’t leave until the shunt was tapped to check for infection. Finally it was done and it turned out he had one of the worst cases of bacterial meningitis that they’d seen at UCLA. They couldn’t understand how Nathan was still alive.

Why, you may wonder, did I insisting on seeing the same doctor, over and over again?

Because he is a world renown neurosurgeon. Because people travel from all over the world to see him. Because I felt that he must be right because of his experience and reputation, and that I must be crazy for doubting him. Because I couldn’t believe anybody would be so idiotic, especially someone in such a position and with such a great reputation. Because I hadn’t learned to trust my mommy instincts. Because I hadn’t learned the importance of always getting a 2nd opinion.

Today, every time I have even the tiniest question or doubt about something a doctor says – I get a 2nd or 3rd opinion. I question everything the doctors say. I make them explain to me their reasoning for doing/saying things. I force them to be accountable and I demand the best from them. I show them I am a force of nature and not to be taken lightly.

I leave you with that thought: When in doubt – get a 2nd opinion. When not in doubt – get a 2nd opinion. When something tingles in your mommy gut – get a 3rd opinion. Especially when it comes to surgeries and life threatening situations.

To read with more details about our experiences with Nathan’s early days and the doctor, please read our Closure & Warning post.

I remember when I started my journey with Nathan, I felt SO overwhelmed. There was so much to learn, and I didn’t think I could ever figure it all out, much less where to start. There was so much to learn about – therapies, medical issues, equipment, advocating, daily care, etc.

But here I am, 4.5 years later, and I’ve made a dent. I’ve learned a little bit about a lot of things. I understand the special needs world.

I’ve decided to start a new column/category, called “Everything I know”. And for the next few weeks, I mostly plan on sharing KNOWLEDGE. Not so much about our life, but more about the things I have learned.

I wish to create the kind of resource that I wish I’d found when we were just starting out on our journey.

I will write about different topics as I feel inspired, and slowly I will try to share the knowledge I’ve gained after 4.5 years of being a Mother Warrior.

Much of it I have already shared here, but it is all pretty spread out and hard to put together. I hope this will make the information in the blog more readily accessible. At times I may just link to old blog posts. But generally I will try to write about issues that would help new families as they embark on this journey.

If you have topics that you’d like me to write about – please leave me a comment and I’d be happy to oblige!!!

Often I read posts on the blogs I follow and I hear myself screaming YES!

So I am going to start a category called “What she said” where I simply link to these posts.

Here’s one that I totally agreed with and felt like I could’ve written it myself:

No Words Needed