Meet the McNeil Family

Meet the McNeil Family

Friday, February 28, 2014

Finished Shower

They installed our glass shower doors this week and the kids' bathroom is complete. It looks beautiful!! Thank you Ryan Reph Remodeling.

Now we just need their rolling shower chair to arrive. We have one on order, however the FDA isn't allowing the import of the chair until at least July. We are trying to get an exemption, although that doesn't seem likely. 

Rare Disease Day

Today is World Rare Disease Day!!!

In the US, any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983. There are nearly 7000 rare diseases affecting nearly 30 million Americans. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions make medical research more difficult.

Alone we are rare. Together we are strong.

Tuesday, February 25, 2014


A friend of mine who had her first child last year mentioned she felt like she was losing herself in motherhood. Her identity became so wrapped up in being a mom, she was neglecting the other parts of herself. I have heard this sentiment before, but I must finally be ready to understand. I get it. Totally and completely. 

Since the kids were diagnosed life has changed dramatically for our family. Matt changed his career, we moved to the DC area, and I threw myself into caring for Waverly & Oliver. However in the process of caring for them, I have neglected me. I used to feel selfish for feeling this way, but I am realizing that if I care for myself I am better prepared to care for the kids.

So begins my journey of refocusing, not to the detriment of the kids, but to the betterment of me. I need to take care of my body - eat better and exercise - to be healthy and strong. I need to take a class or find a hobby, taking some time each week to learn and grow. The most difficult challenge will be developing friendships and connections. I often feel so lonely, connecting with people via phone calls, texts and Facebook. I need local relationships.

I am beginning to realize that when Waverly & Oliver pass away, I need to have some support and structure built into my life to carry me through.

*ISO compassionate women who will accept a loyal friend with lots of baggage and a very complicated story*

Monday, February 24, 2014

Bathroom Reveal

It's finished!!! And it is beautiful. We are over the moon excited with the kids' new accessible bathroom. We installed a 36" pocket door to save space and easily navigate a rolling shower chair into the bathroom, grab bars by the toilet and in the shower, zero lip entry into the tiled shower to roll the kids right in for bathing. The custom glass doors will installed within the next week or 2 to finish the project.

I cannot thank our contractors - Ryan Reph Remodeling - enough for creating such a perfect space.

Thursday, February 6, 2014

Life Lesson Learned

I'm not apologizing for my kids anymore.

Oliver had his 7 year appointment today with our pediatrician. I adore her, but the nurses can be iffy. Today's nurse obviously hadn't read the huge note on the front of his chart briefly explaining Sanfilippo Syndrome. She was irritated that Oliver would not remain still for blood pressure and pulse - I warned her. And she got a bit huffy when Oliver was unable to stand on the scale for more than a few seconds. Typically I would apologize for his behavior and let the person know developmentally he is only 18-24 months old. As I started to utter these words once again I realized that there is no need to begin my sentence with "I'm sorry" or "I apologize". My children have done nothing wrong.

My life is complicated enough. To move through it worried that Waverly's wheelchair may take up too much space, Oliver may get a bit noisy, people may judge me as a terrible mother for allowing 'Mickey Mouse Clubhouse' to play on an endless loop. I have to let it go. No more "I'm sorry". I have to move away from those words. Leave them behind.