Connections

Nothing about a Hydrocephalus diagnosis is "good"....or so I thought.  When you first get the news, it is such a shock.  And then you Google, and freak out.  And then you worry and fear for your child.  But then things settle down and you start to do your own research ....which ends up leading to people.  People who are in the same boat as you. Talking with these people leads to more accurate and full spectrum information....and that leads to hope.

 I had always been a woman of faith - especially when things were down.  If my kids were sick, I always felt they would recover ok.. and they did.  If we were about to overdraw our account and I was worried about bills, I would just have faith and somehow, a random check from some random music gig I'd done would "show up" in the mail to cover us until the next payday. After a few days of Meagan's diagnosis sinking in... I honestly had this strange "peace" that came about me and I just felt like everything was going to be ok. 

I will never forget after Googling "congenital hydrocephalus" the feeling I had in the pit of my stomach. I decided to do a little more ' in depth' research on the diagnosis. I found a website called www.fetalhydrocephalus.com written by another Hydro mom along with doctors.  For the first time on this journey, after reading through her site, I remember having peace of mind.  Michelle's son, Owen, also had congenital Hydrocephalus.  She, too, found the "Google" information scary and put her head together with several doctors to write this site for future Hydro parents, like myself.  Her website covered absolutely everything - from intitial diagnoses, to possible complications from the condition, to equipment or things we may need for Meagan down the road, to anything and everything a Hydro parent could possibly want to know. Among the most valuable pieces of information was the link about the stem cell infusions Duke University was doing for Hydro kids.  Michelle is the very reason Meagan ended up accepted into the Duke program and is able to receive these valuable cells.  Without Michelle's site, we may have never learned about this new hope for children with Hydrocephalus. 


 I decided to search among baby websites as well and see if there were any other personal stories out there.  My search brought me to a website where they had several message boards on a variety of topics.  I remember typing in "hydrocephalus" and holding my breath - praying a message board would come up with the subject I was looking for...and sure enough, one did.  I clicked on it, and brought up the page.  I decided to leave a message and see if anyone would answer.  In less than a day, a woman named Amy messaged me back.  She was the mom of Parker, a little girl also with Hydro.  She talked to me right off the bat as if I were family.  She told me of her story, guided me to her family blog, and gave me a lot of great information about Meagan's condition.  She also was one of the first people who gave me great hope as a mom.  She was one of the first people that made it personal.

Amy also sparked an idea in my head - she had a blog. I wondered how many other Hydro families also had a blog?  I started to google fervently and searched for hydrocephalus blogs, blogs with hydro, etc.. anything I could think of. I searched and searched and happened to come across a blog by a woman named Lisa.  She had a beautiful blog and I noticed she also had two older girls, besides her youngest, Elisabeth, who was her Hydro girl.  On her blog, there was a letter to all future Hydro parents, and an invitation to email her.  I took her up on it.  I emailed Lisa that day and detailed our story to her.  She wrote me back the next day and this is some of what she said:

 I was encouraged multiple times to terminate Elisabeth when they first discovered the hydro. They said, “most parents aren’t prepared to deal with a child like this” and “Do you really want her to live a life of handicaps and surgeries?” But I knew there was no way I would abort my sweet babe. On the contrary, I was going to love her and protect her with my life – she was my baby. And that decision, to keep her, has been the greatest blessing in my life. Elisabeth is an angel on earth.  She fills our home with a love that is indescribable. I feel like the luckiest mama in the world.
 So don’t spend too much time worrying over the details of the future. Just know that she will be yours and you will be hers and that’s all that really matters.The other things will work there way out. You’ll learn more about her abilities and disabilities and figure it out one step at a time. And if you ever need advice from someone who’s been there before, you can always ask me

Words to live by.

************

Lisa also mentioned to me that she knew another couple, Brad and Amy, who had a daughter, Claire, that lived in the Atlanta area.  She said there was a group online where Hydro families "met" and talked, asked questions, and supported each other and that she would add me to it. 

I was added into the online group, and soon connected with Brad and Amy.  It made sense not only because they had a baby girl with the same condition, but because they were also right here, in Atlanta.  I remember immediately finding their blog, scouring it for information, and reading all about little Claire's journey.  We chatted a few times over the Hydro online group, and soon became friends.  Through the rest of the summer, and through the early months of Meagan's life, my posting on the board has now led us to several other Hydro friends as well.  We have met up to 4 or 5 other families in the Atlanta area, several others from around the U.S., and even a few from the UK.  These families helped us with details we hadn't even thought about - for example, a hat for Meagan when she was born.  No 'regular' hats would fit her head.... so a fellow Hydro mom crocheted a beautiful hat and sent it to Meagan before she was born.  The fact that most of us have never met "in real life" shocks me sometimes because there is an incredible bond that exists among these families. 

This past weekend, Brian and I were leaving Brad and Amy's house.  We met up with them, had dinner, and just chatted.  It was honestly one of the best nights of my life.  It was nice to connect with another family who knew exactly what we were going through day to day in person.  We held each other's children... Meagan got to snuggle Brad and Amy.. and I got to hold Claire. We talked about Hydro, but, for the majority of the time, we didn't. The conversations flowed along many subject lines ...  It just felt comfortable to know that if Meagan had an off night, they would just "know"... there was no stress.  Meagan dozed off to sleep in Amy's arms... Claire slept in mine.   In the midst of holding this other beautiful child, rubbing her hand, and then looking over at Meagan peacefully sleeping on Amy, I realized what a gift these connections were going to continue to be in our life.

Looking back on that first day where we learned about Meagan's diagnosis, one of the best things I ever did was get on the internet and search.  I didn't really know what I was searching for.  An answer?  Some piece of information that would suddenly make all of it make sense?  No.  Those things weren't there.  Among the scary words, worrisome predictions and unknown outcomes, there was a whole new family just waiting for us.  And with family, anything is possible. 

Hydrocephalus is not what I expected for Meagan's journey in life.... but I now cannot picture our life without these other incredible people that this journey has brought us.. I am forever thankful to the group of Hydro families that originally reached out to me and offered me a glimmer of hope..I am thankful for their openness and all they offered us to help us prepare for such an unknown path..... and also thankful to those we have connected with since then who continue to renew that hope. 

There is an old song called "The Rainbow Connection."  I never really paid much attention to the lyrics until I started thinking about this post.  The chorus goes "Someday we'll find it... the rainbow connection. The lovers, the dreamers, and me." ... Well, if I do say so myself, I think we have found our 'rainbow connections' in our Hydro families.  No one else understands the 'down days', the worry, and the pain like they do... and no one else understands how truly wonderful it is to celebrate every blink of an eye, every smile, and every little moment that may seem insignificant to others. These families are connected to us now through Meagan.  And it is through these special connections where we hold the highest hope, feel the greatest peace, and experience the strongest love.

For more information on the families that first reached out to us, see their blog links below.  

 

Elisabeth's story: (Lisa)

http://donaldandlisasorensonfamily.blogspot.com/

Owen's story: (Michelle)

www.fetalhydrocaphlus.com

Claire's story: (Brad and Amy)

www.prayersforclaire.blogspot.com

Parker's story: (Amy)

http://www.i-am-pregnant.com/vip/turtlemom