Teddy

Disclaimer: This post is depressing. It's also been in my 'drafts' for almost a month, because hitting Publish made it real. You've been warned.

I have been dealing with a very sad, depressing and life-changing situation...and masking it with Christmas carols, Sparkes & Fur parties and shopping....but in reality...it will never go away.

Wednesday, November 13th, I got the call. It was one of my very best friends Mary asking me if I could pick up her dog Tuna (he's a star on my Instagram feed) after I got home from work. I had plans after work, so I told her it would be late...very late. She sharply replied that she didn't care when....she just needed me to get the dog. Something in her voice told me this was no normal call to watch her dog. I asked her where she was that she needed me to watch Tuna... her response: 'I am at Children's Hospital, and I am heading to the airport to pick up my mom.' Her mom was flying into town, so I knew things were not good to say the least.

Mary has an eight month old son, Teddy, who has spent the better part of his life in and out of the hospital and a LOT of time seeing medical specialists of all types. Literally, I can't list them all for you because I've never heard of them. My best friend from high school had a baby 4 weeks before Mary, and the only time she was in the hospital was when she gave birth....so I knew this was not normal.

The next day, Mary & her husband learned their son has an extremely rare and devastating genetic, terminal illness called Menkes Syndrome. I simply can't type anything else about it because it's too hard...but type 'Menkes' into Google, click on the first link, and I think you will understand why. Anything there is to know about it (which isn't much...there are only about 30 documented cases of this syndrome in the world) can be found on the internet.

One of my best friends has a son that is eventually going to die. 

Her life will never be the same ever again.

Not a single doctor seems to give a glimmer of hope. 

There is no cure for this syndrome, and his case is classic.

I feel helpless.

I can't help at all...I am a helper. I always want to help. But there's nothing I can do to make him better, and there is nothing I can say to take away the sadness.

How in 2013 is there no cure? How can this happen? What baby deserves this fate?

Nobody should have to bury a baby....ever.

I was the only non-family member she let come visit Baby Teddy in the hospital. He is very important to me....for most of Mary's pregnancy her husband was out of the country for work. I was her on-call person in case she went into labor and Daddy wasn't home yet. We spent many hours decorating his nursery. Mary has amazing taste, and this project was no different. Countless trips to Homegoods and Pottery Barn Kids later, Teddy had the ultimate little boy's room. It was so much fun to put together and I was so excited to meet Teddy. The day he was born (Daddy got home 4 days before....phew!) all I could think about was rushing home from work to get to the hospital to hold him...which makes me his first friend- badge of honor I wear with great pride. 8 months later, the same six of us that were together April 23 (Mary, Teddy, her husband, Mom, Mother In Law & yours truly)  were together in a hospital room again...but this one was hot as happy....this one was small, hot, and dark....and it took everything we had to try and not to tear up knowing our precious time with Teddy is severely limited.

No sooner than Teddy was diagnosed, Mary and her husband made the decision to move back to the Boston area (where they both are from) to spend the rest of Teddy's life surrounded by the support and love of their extended families. While I was devastated that my best friend, her husband and their adorable baby were leaving so suddenly, I knew it what was best for everyone. Eventually, they would move back to Boston...but I thought I would have more time to say goodbye. So I helped the only way I could at the time- by helping them pack up their beautiful house....which is now on the market.

I know it sounds selfish and slightly crazy, I feel like this house was kind of mine too. I was always welcome there. I have a set of keys and the alarm code....and we watched  Scandal & Homeland together every Thursday & Sunday night after I got to snuggle with Teddy.  I was always in awe that Mary & her husband had a real house. With multiple rooms...and it was gorgeous. Most people in this area have to save their whole lives for a house like theirs--they did it in their mid 20s.

(one of our Sunday snuggle sessions.....I mean can we talk about that smile?!?!)

When it sells, I will help pack up the remaining furniture and boxes. Again, it's the least I can do from 600-some miles away.

But that doesn't really help with the pain and the never-ending sadness.

She & her husband went from being an independent couple with two booming careers for people their age (Mary & I met at orientation for our first job out of college....and let's just say she has run LAPS around me in the corporate arena) and a gorgeous house in one of the area's most prestigious neighborhoods to full-time caretakers of a terminally sick infant living with her parents.

They spend most of their days now at Children's Hospital in Boston meeting with doctors, specialists, and end of life care teams for hours on end, facing the inevitable daily. I cannot even imagine how they make it through the day...but they do. They have endless amounts of strength....and the way Baby Teddy's face lights up when he sees his Mommy & Daddy can literally make a heart break into pieces. It's amazing. He LOVES his Mommy & Daddy. 

I do not know what to say...ever.
But I call at least once a day. I know they are busy and sometimes don't want to talk, but I want them to know I am thinking of them and am always here when they need it most. When she can answer, I listen, and attempt to keep it upbeat. I just hope that I can take away an ounce of the pain, even for a couple minutes.

I've learned a lot from this. I try to live more positively....yeah there may be aspects of my life that are less than ideal...but I am alive, and I am healthy. I have learned to cherish every single moment--you never know when suddenly it will become a fleeting moment. I have learned to be less selfish....one of my best friends moved away...but it is what is best for her and her family, so I cannot complain-but I can book a plane ticket to visit! (...and just did....can't wait to see you baby Teddy!!)

So...in the midst of all the Holiday craziness, I ask you to take some time to be thankful for all that you have and all the healthy loved ones around you. Be grateful for the love you are surrounded with...because you never know how long it will last. This holiday season has not been as 'merry' as the ones before it....it's hard to get to excited when there is so much pain and suffering so close to my heart.

Please say a prayer for Baby Teddy & his loving family--the physical and emotional pain can be overwhelming.

You can read all about Baby Teddy's journey here:  http://www.caringbridge.org/visit/theodoreteddyfish

A friend and I set up an account to help with medical bills. It is not currently tax-deductible, but if you see it in your heart to donate, please leave a comment below and I will personally email you with information on how you can help. The medical bills from the multitude of doctor visits are mounting rapidly, and finances should be the least of their worries. Any amount helps.

Teddy Fish, I am so sorry that you are in so much pain. I would do anything to make you healthy again. I love you so much.

xoxo,
Auntie