Monday, February 6, 2017

Day 6 - Maggie Mei Henderson

Great Is Thy Faithfulness

When Maggie came home from China, I chose Great Is Thy Faithfulness as the hymn that I would sing over her every night before she went to bed.  Little did I know how much power and truth that song would bear on her little life.   In the first few months home, Maggie suffered a massive stroke and we spent 3 months in the hospital recovering.  In that first month, she was completely blind, completely deaf, and completely paralyzed on her left side.  She is now 80% recovered from that. 

One year later she had a single stage Fontan procedure (to address her single ventricle) because she had not received the first two stages in China.  This was a dramatic change to her circulation and landed us back in the hospital for a total of 4 months fighting pulmonary and cardiac effusions. 

Through each of these tragedies and challenges, that Hymn (Great is Thy Faithfulness) took on deeper truth for me and it still brings me to tears when I sing it over her now. 
“Thou changest not, Thy compassions they fail not”-  I needed to know that when my world was spinning out of control, that God was still the same.
”Morning by morning new mercies I see”- When you are in the thick of it, the best you can do sometimes is take it day by day.  Then when you feel like you have reached your end, the next morning brings new hope.
”All I have needed thy hand hath provided”- Some days it felt like I didn’t even know what I needed but when it came up, God was already providing it.
”Strength for today and bright hope for tomorrow”-  Yes and amen!

Thankfully we are now into “tomorrow” and we are seeing the fruit of our hope played out in the every day.  We have been post-Fontan for 17 months now and hospital free for 13.  We do normal stuff like go to ballet, take swim lessons, attend preschool, and have dinner together as a family.   Maggie loves dresses and admiring herself in the mirror.  She is our family princess and we let her play it up.  Our home is her stage and every day is a new performance.

Being a year on the other side has given me a new perspective on some things that some other heart mommies might relate to or find comfort from:

1. It can take an entire year to recover from the traumatic stress that a long hospital stay puts on you
.  I felt like with each month out, I had energy for something else again.  Whether it was work, cooking, exercising, or going to church, it did not all return to me at once.  It takes time and that is okay.   You will feel like you again.   
2. You experience a bit of an identity crisis
.   For two years my identity was being the mother of the incredibly sick child.  Every phone call and every casual conversation started with, “How is Maggie?”  I was defined by my role and when my role changed, I felt lost for a moment.     

3. You have a new appreciation for boring
.  I remember earlier times in my marriage when I felt guilty if life was predictable.  I felt like we should be doing more.  That is not the truth today.  I am all game for a good boring day.  Bring on the predictable.    
4. You feel abundantly more compassion for families with sick children and are less tolerant of those who complain about minor things.

5. Your calling changes
.  You can’t sit beside the bed of a child struggling to live and not question how you will spend your time from that day forward.  God uses our struggles to develop in us the character and passion needed for what He is calling us to next. 

6. You view every day as a gift.  My husband and I adopted the phrase, “You can’t put a price on a good time.”  For us, it is about making the most out of every moment because the next one is not guaranteed to us.  Now we don’t run up our credit cards or anything like that, but we don’t hesitate to do something as a family that we might have avoided before because of resources.  Our other saying is, “Let’s go make a memory.”

We are making memories every day because we know the statistics for single ventricle kiddos.   I pray that her life would be a lengthy testimony to God’s faithfulness and that we would all  “join with all nature in manifold witness
To Thy great faithfulness, mercy, and love.”


Andrea Olson said...

Thank you for sharing!

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