Train Ride... or not.

I was very prepared for Meagan, in large part due to the wonderful Hydro families I communicate with online.  I talk with these families almost daily, and we truly have a special relationship, though many I have never met in person.  I knew there would be ups, downs, and everything in between.  I knew there could be great strides in development, and regression... and I knew that things may actually be "ok" later but Meagan may need more time.  I also learned that sometimes this is not the case.  I was honestly ready for any of it, any outcome, and any path Meagan chose to take. 

I tended to think of our journey like a train ride.  We all know trains. Especially if you've lived in a city.  There are so many stops.  Half the time, it is annoying to stop because you just want to get to your destination and get off the train already.....but it's out of your control, and minute after minute, you have to sit and wait at one stop after the other until you finally reach where you were going.

I think this week, I've experienced a few of those stops.  This past week, we were with a group of moms from my second oldest daughter's school.  A lot of these moms have younger kids, like me, and there happened to be a baby there Meagan's age.  The baby was sitting (supported) in her mom's lap... hitting her hands down on her mom's knees and laughing every time.  She was looking around, and bending forward trying to land on her hands and just having a grand old time.  I happened to look down at Meagan who I had "sitting" in my lap.  Her back was completely curved against me, looking like a curvy wet noodle.  Her head was hanging to the side, supported by my arm which was wrapped around her upper torso to prevent her from falling over.  She was looking, but not doing anything, and not really "interested" in her surroundings.

In that moment, I thought "Oh my..look at what that little girl is doing...she's Meagan's age..."  .. and then I immediately felt guilt right afterwards! I said to myself "What are you thinking? How can you compare Meagan? That is so wrong!" ... but it had happened. I did what I said I was never going to do.  And it was such a "natural" reaction... to look at this cute little 4 1/2 month old having a ball with her mom, and having Meagan slumped on my lap like a load of potatoes.  I couldn't believe I had let myself "go there."  I knew about Meagan's struggles.  I knew all she'd been through.  I  knew that one day, Meagan may do those things.. but she just needed time.  And I knew that perhaps, she wouldn't but I was ok with that and just loved her so much.  And I could not believe that I had just given such a 'snap' judgement of my situation...by my own thoughts!  How dare I think that way, especially after being so well prepared by other families. Meagan is so young, and I don't know where she will end up... and I had just judged her because I saw one happy little baby Meagan's age.  What was wrong with me?


Fast forward to Thursday night... Brian and I were sitting around, watching TV and just enjoying our "down time."  Suddenly, Meagan woke up out of her sleep and started having a seizure.  Oh boy.  "Seriously?" I thought.  It was so obvious this time, Brian even looked over and noticed.  And we are used to her seizures by now, so for us to take note that quickly was new.  It was a biggie.  I couldn't believe it.. we were at over 2 weeks with no seizures.  Friday night came - and bam.  Another seizure.  Then, today we went to Vigil Mass. Meagan was a little fussy, but I just thought it was something else. She'd eaten, been burped, changed, etc...  Then, my oldest daughter was standing next to me looking down at Meagan. She asked, "Mom, look at Meagan's eyes... is that a bad sign?"  I looked down and Meagans eyes looked so strange.  I knew immediately - it was the "pre seizure" eyes.  They started to flutter and roll, and I noticed this time that her pupils were huge, and then would go extremely small.. and the process would repeat all over again.  Then, sure enough, she had a 14 minute seizure during Mass.  The lady in front of us turned around, and stared...stared....at Meagan with a horrified look on her face.  Honestly, I can't blame her - I'm sure she just didn't know what was going on...but I still felt awkward. Why did I feel so awkward, so defensive?

The other family sitting in front of us had about a 2 month old baby.  The mom was playing with the baby, holding her up.  The baby was very alert, looking around, holding her head up well and really enjoying herself.  My oldest daughter tapped me on my shoulder again and asked "Mom, does that baby have Hydrocephalus?"  I said "No, honey, I don't think so."  She looked at me and said  with a huge sigh "Oh, good." .... It was then I realized that Meagan isn't the only one with 'stops' along the way.  Her condition is also weighing heavy on her sisters' minds..especially my oldest.  She is a worrier, and also very protective of Meagan.  As time goes on, she will adjust, but, it tugged at my heart to think she was so worried that other baby had the same condition as Meagan.


I remember hearing another special needs mom tell me "It's ok to be thankful and happy for your daughter's life... and at the same time, grieve the life you might have originally pictured for her when you found out you were pregnant.".. and after this week, I realize she is so right.  I think at that moment, watching that little girl in the moms group, or having my oldest ask me about the other baby at church, I realized that this is a process.  It's a process of letting go of what I had pictured for Meagan that I had projected onto her before she was born, and also a process of embracing who she really is by being open to whatever she does do, whether on time, late, or never. 

This week we have unfortunately had a few stops on our train.  It was weighing on me heavily yesterday.... The biggest thing that kept going through my mind is how I had actually "compared" Meagan to that other baby.  I felt like such a horrible mom!  And then I realized that I really can't look at our journey with Meagan like a train.  If I did that, it would be a never-ending ride we would be stuck on for life.  And that is not setting a good example for my other kids either.  That is not how I want to view Meagan's journey with our family.

 
I think instead of being on a train, I am going to view Meagan's life like an open book.  That way, when these incidents occur, I can not be annoyed that we are "stopping" or "pausing"... but rather can write it down as just a page in her book.   Like any novel, there will be happy pages and sad pages. I will write down Meagan's little accomplishments with great joy..but I will also write down the frustrating days.  And I have to promise to be honest with myself.  I know if I ever feel like I did at the moms group again, it's ok. Or if I ever feel defensive of someone staring, that's ok too.  It is nothing negative against others, or against Meagan's life... but just an emotion I'm going to have to go through at different levels to live the truth of Meagan's story.  No matter the page we may be on at a given time, though, I know there is another one we can turn anew.  What that next page is, I won't know.  But what I do know is that with her book being open, anything is possible....