Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, October 26, 2016

Which time?

I was having a conversation with Reilly and realizing this was the week Meagan came home from the NICU, I said "remember when Meagan came home from the hospital?" Reilly's answer was "which time?"

Blah.. Such a tough answer.  But it has been the  reality for her and her sisters the last 5+ years.  In and out. In and out.  Meagan has had so much go on in her short little life.  I always have to remember that there are 4 (and now 5!) other little people in our house who are also affected by that.  Sometimes it gives me pause.  I remember those words clearly from my perinatologist when I refused termination .... "but... you have four other children!"..... I have a small flash of sadness for all my other girls go through.... and then.... I get mad. How dare they question what my kids would be capable of handling.

How many 11 1/2 year old's have to ask "which" hospital stay I'm speaking of? Probably none in Reilly's class, and in the grand scheme of 11  1/2 year olds, not many at all have to deal with a quarter of the hardship Reilly has seen firsthand.  But - my anger then melts in to peace.  PEACE!? What's that?  With all that goes on? All the uncertainty, stress and worry? Yes, peace.  You see, while it really stinks that Reilly (and her other sisters) have to know about hospital stays, and seizures, and delays, and worry...... there is always a positive to that.  Because of all the "adult" things they have had to deal with, they also have had to grow up as much more sensitive kids.  Much more in tune with the plight of others, the challenges others may face, and actually live out my "rule" of the house to "always be kind."  

So now as I think about my daughter's earlier question of "which time....".....instead of remembering a homecoming from a hospital stay, I think of.....





....which time Reilly taught Meagan how to hold a pretend microphone and belt her little heart out in song..........





....which time Kaitlin cradled Meagan's head in her hand, hurting from headache, and read to her to distract her from the pain......


....which time Meagan had a really tired day and couldn't walk... so Maura scooted with her to "make her feel like she belonged..."



...which time Kaitlin helped Meagan make a basket at the Native American Museum in DC..
.so she could also learn



....which time Reilly stopped her intense practice because her sister asked for a drink...
and she wanted her to be part of the process....



....which time Anna shared the Kindle and when Meagan couldn't manage,
helped her navigate the game.....



....which time Meagan's favorite song came on, and Maura asked Meagan to
have their own dance party......



....which time the girls played pretend doctors, and made
something typically scary for Meagan, a fun game of pretend....



....which time Meagan desperately wanted to dress herself....and Reilly
helped her arms in her shirt saying "great job Meagan, you did it!"



...which time the girls have given up countless hours with mommy, daddy, friends,
school events, dance classes, and anything else that brings them joy to
walk in to a cold hospital just to give their sister the love she shows them everyday.....
 


Five years ago this week was the first week Meagan was able to come home, feel our warmth in our house, be around her sisters without beeps and wires and nurses, and just settle in to our daily life as a family.  But, it was also the week that my other girls' lives changed forever.  Their realm of normal was forever changed to something unique, and something very few other kids their age would truly understand or feel empathy towards. 

Reilly answering "which time" really showed the maturity she has gained in the last 5 years of being Meagan's oldest sister. It has led her and my other girls to ask really tough and thought provoking questions.  One they asked the other day was "why does a "good life" always have to be a life that's painted with rainbows and roses?"  The answer is, it doesn't.  And they know that it's just not the case. 

Ours is a different life than a lot of our friends.  Our kids have a different perspective than lots of their friends.  But, that's ok.  As much as I missed my sweet girls on the countless nights at CHOA, as much as I felt the 'mom guilt' over the many events I had to forego to make sure their sister was safe, as much as the sacrifices we have had to make as a family to just stay above water that other families couldn't possibly comprehend have caused stress or worry..... I would not change one moment.  Not one.

Recently, I have seen Meagan imitating these behaviors - comforting her sister when sick, and now warming up to the idea of being a big sister herself with the birth of Cara.  Sometimes, she is a little rough on Cara too, but, that is typical of older siblings right? Nonetheless, no one in our family is "worse off" for her being present.  I can tell you one thing for certain - I cannot think of "which time" it would have been easier on us to not have Meagan in our lives. 




I think the biggest lesson Meagan has taught me... is to not doubt the strength of a family.  Sure, it's not what I originally pictured ..... but let's be honest.... what ever turns out the way we originally planned? And even if I could go back, I wouldn't change it. 



My girls, albeit 'young,' have the fortitude of 50 adults. They have not only grown as siblings, but more importantly as compassionate human beings.  They understand the concept of being kind to those different than they are.......they understand that all people have worth and dignity.  They have a very clear vision as to what is right and wrong, and they know how to be independent when mommy or daddy cannot be there in an emergency.  This has started to transfer to motivation well beyond everyday life.  Reilly conquered a 24 mile, 3 day hike at merely 11 years old.  The older 4 girls regularly practice their dancing on their own and keep up a practice chart I could only beg half of my high school students to accomplish.  They let things roll of their back better than a seasoned adult.   They wear their emotions on their sleeve to fuel their passions....... they aren't afraid to "feel," and they persevere even in the most difficult of circumstances.




I don't doubt at times it is difficult to be Meagan's sister.  I think Cara will realize this as she grows and starts to recognize some of the struggles of being a special needs sibling.  So tonight as I reflect on Reilly's answer of "which time?" when asked about Meagan's homecoming 5 years ago this week....... I think she has a point.  Which time? Which time was really the most important that Meagan was home with us?

Every time.  Every time her sweet smile, stubborn attitude, and persistent drive entered these halls was the best time.  Every time was a special time.  And we will continue to have special times.  Every day we have with her sweet soul is a gift - a gift full of continuous lessons my girls will continue to take with them each year they navigate this journey alongside myself and Brian.

Five years ago our lives changed forever as Meagan finally came through the doors of our home.  But five years ago, we didn't realize we were already changed.  Because Meagan had already entered the doors of our hearts.....


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