Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, July 9, 2015


The last few weeks have been filled with such busy times, I realize I haven't updated the blog in a while.  So many people comment about summer break, but, those of us with busy schedules, lots of kids, or other things going on know it's just as busy as the school year.  Add on to that a child who can be unpredictable, and has a lot of extra needs and extra "stuff" it can be overwhelming.  What should be fun times to travel can sometimes turn stressful.  Luckily most things went very smoothly this time.

Towards the end of June, I had another follow up with the perinatal specialist.  This time I brought all of my girls with me so they could see their little brother or sister on the ultrasound.  I was a little concerned about Meagan because she freaks out when the lights are turned off, but she actually did ok.  A lot of that had to do with the doctor I saw.  After my experiences with Meagan and the last appointments with this baby, I told my OB about what they had said.  She was not happy and told me that I had to see Dr. A from that point on.  Upon checking in at the specialist, I asked if I was seeing Dr. A and they said yes.

 I knew from the minute he walked in that it was going to be a great match.  The very first thing he said to us was "I know we aren't going to find out gender, but I'm going to call your baby 'he' until the birth because he or she, I can't say 'it'.... there's a person in there!"  Yep.  My kind of doctor :)  He talked to all the girls about what they were doing this summer, wished them luck at Nationals, and asked them if they were excited about a new brother or sister.  Surprisingly, Meagan didn't freak out either.  I think she could tell his sense of calm, and also that he was genuinely interested in our family.  He talked to Meagan and told her she was pretty and directed her attention to the big screen on the wall so she could see the baby.  Meagan was hilarious - she kept saying "wohhhhhh" and "hi baby!"  It was the cutest thing ever.  The rest of the girls were equally excited and noting every part of the baby and were completely amused by the baby rolling around, stretching out, and ultimately, resting his/her hands under the chin as if we were taking a picture.  Dr. A said all looked ok so far, and we would go ahead and have another scan at 18 weeks to look at the brain anatomy in more detail.  He told the girls if they had any Irish dancing shows locally to tell him and he would definitely come.  We left with a good feeling, the girls were ecstatic having seen their sibling, and Meagan of course continued to ask for "the baby on the movie."

After the appointments, we hurried home because we had a lot to pack.  Nationals was in just under a week and we had to pack the car to leave.  We brought Meagan's wheelchair and walker so for longer distances she could rest, but in the hotel she could practice walking and keep up her progress. We stopped on the way up at my parents' house to see my brother and nephew, and also take a little break so I made sure to get out and walk as much as my OB instructed.  Meagan had fun at Nana and Pop Pop's on our stop over.
Trying on Pop's hat

Riding on my brother's old horse from
 when we lived in Germany

The week was a lot of fun for everyone.  Reilly and Kaitlin competed in their first North American Irish Dance Championship ever.  They danced really well and were so close to recalling! They learned a lot and are excited for a great Oireachtas (regionals) in December.  Anna, Maura and Meagan were enjoying time with my parents, who came up to help us.  They got lots of trips to the pool, some exploring of Providence, and also lots of time to watch dancing.  We were able to have a little break in the middle of the competition when both girls had some time off and took the family up to Boston.  We visited Quincy Market, walked the entire Freedom Trail and climbed the tower at Bunker Hill.  The girls had a great time seeing all the historic sites and getting out in the fresh air. Kaitlin was able to find a new solo dress and was over the moon to wear it on her dance day! The girls were excited to see their cousins who also dance, and also stop on the way home to see Brian's sister and her family.  They just pcs'd from Newport back to the South so it was the perfect stopping point on the way back to the house. 

Reilly having some fun after her soft shoe round

Kaitlin ready to dance treble jig in her new dress!

Along our walk in Boston of course...

Meagan at the Market

For Meagan, it was a very exciting week as well.  Since she can't walk, we all know how obsessed she is with the Irish music and rhythms.  She loves looking at the dresses, shoes and all the dancing.  She would clap every time dancers took the stage and ask when the music would start.  She got a lot of practice in her walker around the hotel.  One night she met a few dance teachers from Chicago who talked with her a little bit.  Every time we passed other dancers or dance families they would smile at her, or tell her encouraging things like "good job!" or "wow you will be dancing in no time!"  It was so nice to see and hear all the positive responses directed towards Meagan.  She was extremely spoiled (in a good way) the entire week with the positive attention and motivation to keep moving.  She even got to spend some time with Emma and Erin as we went over scores one night.  Meagan was in heaven spending about an hour with them talking about dance, playing with them and flipping through their phones looking at videos and pictures.  We are very grateful to have such warm hearted teachers.

Meagan talking to anyone who walked by as she 
worked her way through the hotel lobby

At the pool with mommy

As we made our way home and started to unpack, I got a reminder on my phone that Meagan has an appointment with her Neurosurgeon next week.  I had almost forgotten but sure enough it crept up on us.  My second thought was that we have finally had a summer with NO hospital visits.  No ER trips, no admissions, and no surgeries.  It feels strange to say that, and I'm almost wary to admit it, but I have to.  It's something to celebrate.  Meagan has been able to just have summer for the first time in her little life.  No pokes, owies, hospital gowns or recoveries.  It dawned on me that for just a little while, we have actually functioned as normally as we can and didn't even realize it.  

Meagan will continue with her PT now that we are back home - more meetings with her therapists outside of the home to facilitate more functional walking with her walker.  She does well but still tires out so easily.  She stops a lot and will just sit down.  I can't blame her! It probably feels like us running up hundreds of stairs every time she pushes her little legs to take step after step. To help with her balance and hopefully build more strength in her hip area, we have been working with her on independent standing.  On the way home in the hotel, Meagan decided that was her time - and showed us this: (don't worry, I was right there and caught her :) )

Sometimes things with Meagan and life in general can seem overwhelming.  I hide it pretty well (thank you type A personality) but it's just our existence.  So when we have these experiences of a great week away with great family and friends, and great encounters with strangers, it just reinforces the strength in me that I need to save up for the harder times. Seeing Meagan maneuver her walker through the hall, bumping in to tables, chairs and walls, but then self correcting... or seeing her get stuck but have the awareness to say "help!"..... or seeing her be able to go where SHE wants to go and talk to whom SHE wants to talk to.... it was overwhelming in a different way.  For the first time in almost four years, Meagan was finding her own independence.   She was making choices, making her own path, and for better or worse, deciding exactly what she wanted to do.  She's always had that spirit in her - and now seeing her body start to respond somewhat to that is amazing.  

We hope everyone had a wonderful Independence Day week with their family and friends.  We know we did - and watching Meagan begin to find her own way made it that much more meaningful.