Oh The Places You’ll Go!

So…Back in October, we took a leap of faith by moving to California.  At the same time, we took another leap of faith and applied to have Elizabeth participate in the IGF-1 drug Clinical trial being run out of Boston Children’s Hospital.  This study is a double-blind cross-over study that require a lot of commitment from the families (as well as the researchers).  Elizabeth qualified for the trial, but we had to stabilize her schedules.  With our move to California, we had to stop all therapies and schooling for some time.  Finally in March/April (after 5 months), we had all her therapies consistent.  She does OT and hippo therapy (horse riding therapy) and of course schooling.

We set off on a course to do the screening visit July 14 with the first study visit to commence the same week.  This is the end of our first week here in Boston.  We arrived Sunday morning after a 5 1/2 hr red eye from San Jose.  Both kids did great.  I did not sleep, but sleep is for the weak, right? :)  We are lucky in that I grew up in Massachusetts and our family (parents and siblings) are within 30 minutes from Boston.  Elizabeth has been an absolute rock start this week.  She has had blood work and done lots of baseline testing.  She is a champ.  we have been up at 5:30am every day this week and driven into Boston and the first time she complained was today.

We have met lots of amazing people in route to our destinations for a cure for Rett Syndrome.

First, I will start with JetBlue.  The staff and flight attendants were amazing and helpful.  They stepped up and helped get the luggage and kids off the plane (2 kids – 1 parent = completely outnumbered).

Second, Hertz…we had a rocky start with no EZ-Pass transponder, but the extremely diligent cashier was able to find me a comparable car after an hour of me waiting with a transponder…Not sure if she felt bad for me waiting or what!  But their employee gets credit for going out of the way.

Thirdly, and really they should be first because that is really where they belong, but we are working in order of attainment this week… My parents and siblings.  My parents for giving up their some of their planned summer vacation to babysit a whiny 2 year old and to support our efforts to get Elizabeth in and out of Boston every day this week.  My siblings for stepping up and help in the same way and being consistently supportive.

Fourthly, the amazing stranger who is a Boston CHildren’s Hospital employee who guided me by walking partially with me to my initial destination on Monday without question.  She sought me out and asked me if I needed help. I really didn’t need it, I was looking at directions and reviewing instructions, but I took the helping hand:)

Fifthly, the amazing nurses, doctors, researchers, research assistants and every one else we have come into contact with at Boston Children’s Hospital for making it look easy and making it easy every step of the way.  There is much drama in a 5 yr old’s life and much exhaustion when it comes to participating in major research (clearing my throat)…and they take it all in stride.  They attempt to make her smile, laugh, and attempt to soothe her when she is hysterically crying and no one else knows what to do.  Sitting on the floor in knee length dresses (never would I do that…but some of these ladies…they are amazing!) and btw did I tell you, some of them are in heels!  Say what!!!

When in Rettland (thanks Colleen)…sometimes it can be isolating.  When we are in Rettland, we lose ourselves and it can be scary.  But we pull up our boot straps and move along and live another day.  Participating in ground breaking research…is SCARY.  You don’t know what to expect.  I had panic attacks every day last week before leaving California for Massachusetts (And I have family here…I grew up here…I am here).  The unknown is scary, but ignoring the unknown is far more scary.  We have to takes risks, calculated risks for ourselves and our children to better their lives and our lives.  We need to show courage in the face of adversity and show that we support the Doctors and researchers who know they can find a way to better our children’s lives.

A random mutation is like winning the lottery.  You are a celebrity.  Isolated because you don’t know if people are nice to you just because or because they see a greater purpose…  Does my analogy make sense?  It is a crappy way to look at it, but really it is true.  I had a better change of having a child with Rett syndrome than winning $1 million dollars.  haha  that is quite funny.  I know some people would change it, I would be lying to say that I wouldn’t change it for $1 million dollars, but if I took Rett syndrome away from Elizabeth…I would change who she intrinsically is…it would change all the people I have met and it would change who I am.  And let me tell you…If you have to belong to a special needs family, there is NO other family like the Rett Syndrome family.  Efforts are always made to see each other, even if only for a few minutes for a hug and laugh and sweet baby kisses.

Elizabeth and rett syndrome, has made me a more genuinely caring person.  I look at people rather than their disability.  I am still curious, but I am aware.  I see the person, not the disability.  It has brought me to a career I would not have found without a child who has a profound disability.  I have been a special needs parents, but also an advocate.  In the past week, I have become, along with my beautiful 5 yr old daughter, part of a clinical trial.  It is exciting and scary and wonderful and exhausting and eye opening.  There are so many details that go into a clinical trial and you only see it if you are a part of it on the patient side or the researcher side.  SO MUCH DETAIL!  It will be a brutiful (brutal and beautiful) experience.

    This entry was posted in Rettology. Bookmark the permalink.

    Leave a Reply

    Your email address will not be published. Required fields are marked *