Darkness Into Light

Today at Mass, I was listening to the Homily.  The Deacon talked about change and about being grateful for what we have. He used many anecdotal stories and passages from Scripture to relate all of this to perspective in our life, and how to have the correct view of our world. He also talked about how this attitude can bring us from "darkness into light."  These were the words that stood out to me the most...because I truly feel like that is how this weekend has been for Meagan.

Meagan's entry into our family,her Hydrocephalus and all that has come with it so far, certainly has given our lives perspective.  She has forever altered our perspective of the world, how we view our children, and how we view life in general.  This was a given, considering all she has been through, and all she will go through in her life.  However, I think in today's Homily, God reached out to me. I have been so focused on my change in perspective, I have completely overlooked what Meagan's perspective of the world may be. 

What must it be like for her to be growing, gaining weight, getting bigger, but still not able to control much of her body movement? What must it be like for her to try to look at things, but not be able to focus for more than a second? What must it be like for her to be so content, and then to have a horrible seizure wake her from a restful sleep? I feel like Meagan's perspective of her world was probably pretty dark.  Not because I believe she feels this way deep down in her soul....but because during these times, the Hydro and all its 'accessories' were able to rule her life, and therefore, unfairly overtake her perspective.  Trials she has had to overcome and didn't know why ... pain she had to live with and not be able to tell what it is.... strange occurances in her body that she could not control. 

Ever since we changed the dose in her seizure medication, I have seen a little change in her.  After the new dose was in her body for a full two days, I started to see things shift.  We are now on day 3 with NO seizures.... she has slept 5 hours in a row the last two nights, and when she has awakened, she is content, calm, and looking around the room.  She doesn't have awful shaking waking her from her sleep in the last 3 days.  She doesn't have anything jerking her body in an uncomfortable and unnatural manner in the last 3 days.  Meagan's perspective on her world is changing.  She is slowly realizing the wonders of the life around her.

Just yesterday morning, she was sitting in her bouncy seat.  I noticed her bringing her hands to her face.  Her mouth would immediately react to her hands, trying to eat them, suck on them, or drool all over them. I realized...she was trying to put her hands in her mouth! This may seem silly, but, this was an amazing step for Meagan. It showed progress.. it showed her starting to think of how she could soothe herself.  It showed she was thinking about a process of how to get her hands to her face...something important for eating later on... and a huge milestone for her. 

Pulling those hands to her face!

Mmmmm.. fingers!

Content baby sucking on her own fingers... what an accomplishment!

I was so happy she'd found her hands. We had a sign of progression forward after so many weeks of struggles with her seizures.  I was holding Meagan last night, talking to her, and trying to keep her awake for a little bit.  In the past, she has mostly stared at me when I talked to her.  Recently, she had started to look at me when I would speak to her, rather intently, for a few seconds as if saying "Yea mom? What mom? I'm listening!"  But last night, she chose to tell me something else.  I said to her, "Hi Meagan! How's my girl? How's my baby? How are you doing tonight?" And instead of staring at me, this is the reaction I got:

A little, teeny, beautiful smile.  So content.  So happy.  So gorgeous! 

I couldn't believe she just smiled!! I kept talking to her, and this time grabbed my phone to snap a picture... and she did it again! What an amazing moment!

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Just in the last 2 days, she is becoming curious about her life.  She is interested when I talk to her.  She is getting the rest she needs.  She is able to communicate with me for the first time in her little life.  That one little, tiny, beautiful smile was a huge conversation for Meagan! She was able to tell me more than she has ever been able to in 3 months.  Her smile in reaction to my questions was her answer.  She is still in the game.  She is still fighting.  As we begin to, dare I say it, successfully manage some of the immediate challenges Meagan faced, she is reaching out and grabbing onto her life.  She is showing me her perspective....not allowing the Hydro, or seizures, or pain,  to falsely represent her anymore.  Meagan has seen some light from her darkness.. and she is running to that light full speed ahead, for that is where her hope lies....

Her smile was also a small message to me about my perspective.  While it's important to embrace her challenges and realize how these things change my life, it is also important for me to take those challenges on. Full force. And always be careful of the perspective I'm giving off to other people, most importantly, Meagan herself.  She can sense if I am stressed or disappointed.. and while it's ok for me to appropriately vent these feelings, I need to always be strong and positive around her.   I need to keep reminding myself to celebrate every little milestone Meagan accomplishes.  If she is, say, still not able to hold herself up by this Spring, but can continue to give me those little smiles, I need to relish those moments.  I need to let her communicate with me the way she does best and let her perspective of the world guide us on this path.   I have to give off a positive attitude....because there are going to be many dark days ahead.  That is just a fact.  So when Meagan's perspective gets clouded once again by one of the many monsters she fights everyday, I need to be right there - shining my light brightly ... so she can grab on to it, and pull herself from that darkness once again.

I have no doubt that I was meant to hear that Homily today... because ultimately, God will guide Meagan best.  Today, He reminded me through the Deacon's words that my perspective is not always the right perspective for her.  Meagan, I will do a better job trying to focus on your view of the world, and hold myself to that same high standard.  What you are going through is a constant battle to move from the darkness into the light, yet you press on.


Megs, this week,  I am so thankful for that sweet, sweet smile.  Because through it, you have shown me your perspective - stay focused on the light.  And the darkness can never win. 

Darkness

Light