Thursday, January 26, 2017

Heaven needed him more...

While our Nation seems at war over what rights women do or do not have,
 my Twin sister was fighting a battle all her own.
One that ONLY women can do.
This is a true women's right movement,
The choice to be strong when you feel broken, 
and bring a baby forth you know you won't be able to bring home.
Whether you are Pro-choice or Pro-life is not the issue in this instance,
All that matters is a baby's heart stopped beating and a mama who loved him had to make choices.
D&E, induction, or go into labor on your own?
All risky, all a heartbreaking end to pregnancy.
I have always been absolutely proud of the mother my sister is, 
Any child born to her is going to be cared for, healthy and loved beyond measure.
But I do have to say, until this moment I didn't realize I could be MORE proud of her.
2 miscarriages for her, Multiple for our younger sister and one of my own have taught me she is a fountain of reproductive knowledge and support. 
But a stillbirth? 
This is something completely different. 
You knew for sure the heart was beating, body moving, baby growing...
You had made it past the supposed "scary part" where everyone is just counting the weeks until the magic #12...
The part where you can for sure tell friends, family and shout it from the rooftops 
"We are having a baby!"
But to be in an appointment past the magic 12 and there be no heart beating where you knew there was one before? 
That for a mom is the stuff nightmares are made of...
and I believe was in the top pregnancy fears for my sister as I know it was in mine.
Well she has now lived it.
She has handled it with a grace and peace that I have never seen,
She is the one keeping other's strong and consoling them when she should be consoled.
She is proving that when a woman makes a choice she can move mountains.
And that a woman of faith is not a weak and cowed person, 
they are strong because they have hope for the future weather it be here or in heaven.
She has done this all despite being alone with her other children because her husband is away training for a medical alert dog.
When she told him about the loss of their unborn son he wanted to come home.
She told him No, not because he didn't need to be here with her.
But because she knew that watching and waiting for her to deliver this child would be more painful for her whole family, and the dog was needed more.
Yet another choice my strong sister made that impressed me in this tough circumstance.
In the days preceding the news she made the choice to deliver her son WHOLE.
I only say this because at the gestational age he was his body wouldn't have survived a D&E.
She wanted to see her son, Hold him, let him be born with dignity and love.
To use this to heal her broken heart and mend herself. 
Having done what she set out to do,
Be his Mother, 
Something she had dreamed of from the first moment she knew he was coming.
Something she had prepared herself and her other children for with anticipation, now never to be.
My own daughter asked me "why did God take the baby away?", 
My only answer was "Heaven needed this baby more..."
How else do you explain life and death to children?
It's a hard subject for Adults.
I have seen more teachable moments in this circumstance, 
More times where Nicole could have been angry, lashed out, 
but instead she has shown her children a loving example of how to deal with dashed hopes and tough circumstances.
She herself has drawn strength from the compassion of her kids and the child-like faith that they will see their brother in heaven.

SHE knows she delivered a child,
 but to those outside they don't know that... 
  • No maternity leave to recover from her 16+ hours of labor, 
  • No healing time from the daily marching on of life to grieve, 
  • No baby in her arms to distract her from the after pains that leave you exhausted and on edge.
  • Back to school just one day after, and back to work at less than a week.

McCleod Eugene was born the day our nation was Marching for Women's rights, and my sister "marched" right along with them in another way, 
her own way. 
She may not look "fine" but she will be.

She said it best...

Nicole:
The day I went in to deliver my child, many other women were marching at capital cities across the United States.
They say they were marching for women's rights, reproductive rights, the right to choose what happens to their bodies and the right to abortion.

My heart on many of those subjects are vastly different than the women who participated, but I was expressing my own reproductive rights, the right to choose what happens to my body, and the right for my son to be born whole, no matter his gestational age or what the medical community considers him. 

 The point is that we have rights as women. Some of us choose to stick up for the opposite side and it doesn't make us oppressed. I believe if many women saw the masterpiece I got to hold in my hands on Sunday morning that they may feel the burden I do. I was a mother, a wife, a daughter, a sister, a friend, and most importantly a woman that day doing something only a woman can do...bring forth a child from my own body. In all it's painful, heart-wrenching glory it is going to be one of the top 6 blessed and WOMANLY moments in my life. #iamfree #allwoman #daughteroftheking

Tuesday, January 10, 2017

Do you get time away?


While having a house full of 8 kids this week (yes, I said 8) ranging from 1-7 years old,
 it made me pause and think about how often we as parents of children with special needs get time away.
These kids have multiple diagnosis, disorders, allergies, delays etc...
  • Autism
  • Dysphagia
  • G-Tube
  • Apraxia of speech
  • Celiac with Dairy intolerance
  • Sensory Processing Disorder
  • Frontal Lobe delay 
  • Gross/Fine motor delays
Now I list this not because I want to get sympathy or a woe-is-me, I love having all these babies under the same roof.
They get a long so well with minimal fighting, and the food restrictions are not difficult to work with and everyone can eat and be healthy.
Just ask my husband I can't stop cuddling the baby because she is squishy and snuggly and my 2 yr old (baby)  is a touch me not because of his sensory needs.
I am posting this because for the first time in 7 years my sister is having a break.
I kid you not she has been with one or all her 5 babies since birth for the last 7 years.
 She needed a break a LONG time ago, but it's sad that we as parents of special needs kids struggle to feel comfortable leaving these babies in the care of other even for a few hours let alone a day or more.
Parts are certainly overwhelming and we all learn to move into a new "Normal" once a routine or plan of care is in place.
But it's terrible that we don't get to take time for ourselves. 

I am happy for my sister!

She is currently pregnant with #6 and will be welcoming that precious baby in July 2017.
She is also working and going to Medical Assistant school and will graduate in May 2017.
 My Brother-in-Law is in Florida training with his new service dog.
And honestly if he wasn't needing to be down there I know this 8+ days with the kiddos wouldn't have happened. 
Not because we weren't willing or able (we offered to take them so they didn't have a babysitter for 3 weeks to help while dad was gone).
 But because I think as parents of kids with multiple special needs/dietary restrictions we feel guilty.

Yes, GUILTY!
  • To take any extended time/vacation away
  • Ask for help
  • Make plans that would involve more than a trip to the store
  • Feel vulnerable and less than Super Man/Woman to friends and family
Why is it more acceptable when your child is "Typical"?

We all need time away to recharge and date our spouse.
We need to make sure our own mental and physical health is met, and that we can detach ourselves from wrapping up our whole identity in our child's disorder/condition.
Have we ever thought what life may look like when we no longer have to be the 24/7 caregiver? 
God willing because they have started living on their own or have mastered enough skills to function unattended outside the home at a job or school?
There needs to be a life for us outside of "mom/dad/therapist/teacher/driver/cook/maid" otherwise we will have a very hard time transitioning from carer to just ME.
And I know I am being optimistic, sometimes and actually more often than not the parent(s) have:
  •  A limited and really non-existent local support system.  
  • Don't get out much to be able to meet good friends. 
  • Too expensive to pay a suitable babysitter.
  • Child's needs are too great to have someone who doesn't understand complex medical needs
So friends and family of these special parents please I beg of you...

If you have an afternoon or evening offer to watch their child, 
If you don't know how to care for the child ask to be taught.
Come over and have coffee or lunch with them if they can't leave the house.
Call and chat with them.
Let them have a NAP! Believe me they are chronically exhausted.
It is these moments where someone else can meet them where they're at that will make such a difference.
Don't be afraid, if the parent's can learn and handle this then so can you it just takes a willing heart.