Friday, April 8, 2016

It is a Fierce Love

Fierce:
"having or displaying an intense or ferocious aggressiveness";
"showing a heartfelt and powerful intensity"

Love:
"unselfish loyal and benevolent concern for the good of another"

I was recently asked to describe what is means to be a mom to a special needs child, a child with significant medical needs.  I have the privilege of being one and knowing others.  We are all so different and our children's needs are different.  Pausing to think about the one thing we have in common; without a doubt it is a fierce love for our children.

A fierce love that powers us through so much; it has changed the fabric of our being. And we love our child with every fabric of our being. 

It is a love that is so aggressive and ferocious that gets right in.  A love comes barging in when we first hear a diagnosis and/or a grim prognosis.  We hear that we have a child that will struggle, daily, just to be in their own body.  Oh that love digs deep down in. We learn that every day will be a battle.  Over time, we realize that the battle is still present but it really becomes a privilege.  This fierce love sinks it's teeth in deeper and deeper each day.

This fierce love is more powerful than anything I could have imagined. I had no idea it would come with such extreme joy and grief, all because of your child. Your child. We have been knocked down to some very low lows but we get right back up, for our child.

We have gone to battle for our child.  Making medical decisions that we never thought would happen.  Understanding those medical decisions, sometimes more than the doctors. But we still have to find a balance of how much medical intervention and their quality of life.  One of our early decision came when with addressing seizures, how many seizures in a day can he handle or how snowed with medication will he be, are the seizures bothering him more than the medication, etc.? Now it has become, how many more surgeries, hospital stays, etc.?  We battle with ourselves to make those decisions.  Sometimes we battle with God, pleading for our child's comfort, asking why, when is enough, enough?   That fierce love comes with some fierce responsibility and questions.

Our definition of happiness and being content has changed.  It changes the moment your child makes progress or, at least, is stable. You have new standards. It changes when they smile and when they need you.  They need you for their survival, for their well being.  As a result your parenting becomes the most unselfish, loyal and benevolent concern for another that you will ever know.  One you did not even know you were capable of having.

Over Easter weekend Brayden was not happy; fussy about everything.  I just could not get him to settle down. We thought he might be tired or just all of the chaos of people around.  I decided to put him to bed early. I was rolling him over in bed. He rolled his head right in to my shoulder and he stopped the crying. I scooped him up. He sat in my lap. I know I heard him give an audible sigh of relief. All he needed was his momma to hold him, to quiet his body, to provide comfort and finally peace.  And I stopped everything else that night, just to hold him...for a few hours we sat there. His world need to be stilled so I had to still mine.

This fierce love could be defined as a momma bear.  We pull out the momma bear with insurance companies, schools, doctors, equipment companies.  Fighting, protecting and providing for our child. But that fierce love come roaring up faster when someone has harsh words about our child. I will not share any words that have come our way because I do not want to even acknowledge them.  But trust when I say that having a special needs child comes with all kinds of comments, criticism, unwelcomed "advice", etc.  This fierce love had to make us stronger.

The powerful intensity of this love is almost terrifying. This child has changed us so much, changed our world, that we cannot fathom a world with out them in it.  Their care, happiness and comfort consumes every part of our day and decision making.

We have had sleepless nights being up with our child at home or in the hospital.  Or we even have sleepless nights worrying, thinking about them. Even our dreams (or nightmares) include them.  We live at a constant level of stress.  But to be without that stress would mean that we would be without them. Some have already lost their child, others are battling major medical issues, others are grateful to be in a "healthy" phase and we have learned to live day by day or sometimes even just moment to moment.  This fierce love has taught us not to take one day or even sleepless night for granted.

I am forever grateful for this fierce love.

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As I said, this fierce love has changed that fabric of our being. This list is what I pray becomes more and more of my character.

From Focus on the Family: Characteristics of a beautifully fierce woman
  • She's filled with gratitude for God's good gifts. Her heart is ruled by the peace of contentment.
  • She's passionate about things that matter rather than living for the trivial.
  • She's willing to battle for a worthy cause rather than shrinking in defeat.
  • She protects and defends the helpless rather than using her strength to bully others. She is known as a sincere encourager.
  • She's honest but kind.
  • She walks in confidence and humility that flow from her recognition of Christ's work of grace in her life.
  • She has the power to influence and inspire because she lives under the Spirit's control.
  • Her identity and value are rooted in her relationship with Christ.

4 comments:

Elena Jarvis said...

Hello Carrie,
This is an amazing piece of written love. I am so encouraged to hear of your ferocious love. I totally get it... after all I am a mom. :-)
As I read these words, "when someone has harsh words about our child," my heart was crushed and the Spirit within me brought me to tears. I immediately thought of the verse that speaks about those doing harm to little ones, that it would be better for them to have a mill stone placed around their neck and for them to be thrown into the sea. If they only knew the damage they can cause with their words, their thoughtless words. Oh how precious Brayden is to you, and my children to me, (I know our journey's are different) but if we attempted to imagine that Someone loves them more ferociously than their mamas... we couldn't come close enough to know the depths of God's love for them. His love included providing you as the mama... the ferocious loving mama, just exactly what Brayden, Luke & Carter needed - oh and let's face it, Jeremy too!
God bless you! I see in you those qualities you listed, but I also understand they are work to acheive, so press on, and I will always be here to cheer you on.
~Elena

Anonymous said...

Simply beautiful! I too know that fierce love! Because of Meya we have learned what is truly important in this life. My faith in God has strengthened, as we have learned to rely on God more and more during the tough times and come to have that relationship with God at all times. I never dreamed that this little girl, who came into our home at midnight, would be forever ours and teach us so much, even while being nonverbal. Thank you for having the words to explain our fierce love for our children.

Dannette

Anonymous said...

No posts for a while... Is Brayden still OK?

Anonymous said...

I've not heard anything from this Blog in a long time but don't want to assume the worst as the last post entry mentioned Hospices. Please post something and let us know