There will always be sad days...

It's amazing, how you never forget your birth story.  The littlest details, the people, the place, your perfect child who was just given a diagnosis that you didn't even know they had until they were born.  All of a sudden something reminds you of your experience and you feel overcome with this insane about of sadness and despair.

Like everytime we go to my husbands sister's family house, I drive by the hospital where Ronin was born at.  My stomach drops everytime and I can replay the entire week were there in my head.   I still can see the doctor at the end of my hospital bed, waiting to tell me something.  Where the ice machine was, how my room was the furthest away from the NICU and how I had that long walk to go cry behind closed doors.  I remember cuddling my baby boy in the corner spot in the NICU,  hooked up to all these cords, being poked to check his blood sugar so, so often.  I can see everyone face, hearing the nurses play acoustic lullabys on their phone for the babies there. I still remember the other family's stories that were in the NICU with us; the stories never told to me but learned through observations.  I remember my baby boy having to have to get his heart checked after the official diagnosis of Down syndrome came through on paper.  The doctor checking and listening so close and was sure there was no murmur.  Learning of the results that his heart was ok and the emotion with that.  There are so many more details that I will never forget, I can't forget, forever etched in my soul and mind.  So to have these infinite thoughts when just looking at a building, is a powerful thing.

Sadness is a powerful thing
But to know true joy you need to go through a true despair.

I welcome the sadness because I know it will always come but I am given a gift right after I go through it everytime.

The gift of Trust

I could go through this life being sad that my son has Down syndrome. The constants of "Why did this happen to me, to us?", like an itch that you just cannot scratch.  But I am choosing to trust instead. He is closer than we know...

"Lord I hear You I know You're there
Closer now than my skin and bones could dare
Breathing deep within me
You are always with me

I can see You where eyes can't stare
Brighter now than the sun could ever dare
Breathing all around me
God I know You're with me here"

-Closer than we know-Hillsong

So after the sadness comes the most beautiful sunrise.  I trust that my son and possibily even I have a greater purpose.  I may not see it now and I might never see it but I know God made Ronin the way he is for his devine reason. I will never question that reason.  I am blessed beyond belief that Ronin calls me Mommy.

My story...aka A Birth Diagnosis

" Just another minute," the doctor said.

 Ronin then made his appearance with a loud cry.  Tears streamed down my face before I saw him. I was the mother to three little boys in that instance.  I was in complete bliss.  They finally told me how much he weighed. 6 lbs, 14 oz.  Totally not expected as his brothers were about 9 lbs each.  I thought it was cool that my son and I had the same birth weight.  He was 20 inches, while I was only a mere 18 inches.  He was little and 8/9 on the Apgar but then the nurse changed the score to 9/9.  A sigh of relief as an Apgar score could determine a baby's health at first.   They finally brought my boy over to me. He was still crying, when Jakin laid him next to my cheek.  He immediately stopped crying and joy filled my innermost being.  A baby, my baby, a new life, the life that was growing inside of me was right beside me.

I was all stitched up after having my third c-section and then wheeled to recovery.  Ronin followed me to my room where we immediately initiated nursing.  I had just quit nursing my three year old only six months prior, so I knew what we had to do.  Ronin latched immediately and stayed latched for over an hour.  The nurse then laid him next to me in his clear bassinet.  I was flooded with nurses telling me what a beautiful baby boy I had.  As he laid next to me, he looked at me with his eyes wide open. I looked at him and thought " He has Down syndrome."  I closed my eyes and shook my head, not knowing if my eyes were foggy from all the medication. I looked again and I didn't see Down syndrome again that night. The next visitor was a pediatrician from the clinic. They looked him over. I didn't think much of him checking on Ronin as he was doing well I thought.  I figured the doctor would say he looks good, keep nursing. But instead he walked in front of the bed and said there were some concerns....

He expressed that Ronin showed a few characteristics of Down syndrome

I screamed in sheer panic and in horror.  My husband's eyes immediately started filling with tears.
I felt like my heart fell out and was no longer beating to make me exist. 
He explained Ronin's chararcteristics; thicker neck, small ears, almond eyes, flat nose bridge.  He said however he was not sure because his features he was presenting could be still swelling from living in amniotic fluid.  I proceeded to tell him that Ronin is 1/4 Asian.  Most the features he listed were those also that some Asian people possess. I was actually born with all the same features minus the thicker neck.  The only way we'd know for sure was through a blood test.  We would get the results as soon as they could; roughly 3 to 7 days.

What was I supposed to do until then?  I've never been so lost in my entire life.  It was literally like picking a flower's petal saying  "He has Down syndrome", " He doesn't have Down syndrome."  I did that for four straight days.  Meanwhile Ronin was admitted to the NICU for temperature and blood sugar issues.  He would not latch for breastfeeding after that 1st day.  I had my heart set on nursing him, like I did his brothers, even with a goal for 2 to 3 years.   After him getting constantly poked and prodded , I asked the nurses to try a bottle with him. My milk was not quite in yet, so he did get a little formula.  Mind you, this hospital and staff never once mentioned the "B" word, even with all these issues going on.  They were so respectful and we even tried the nasal tube for feedings.   Ronin really started taking to the little bottles they had. So i at that moment, said I'm going to work on pumping to get my milk going.  

Life was really settling into the NICU.  You are grateful for the wonderful and modern medicine that saves so many babies.  The  NICU nurses are really angels at the hospital.  They take care of all the babies while their parents are away and truly comfort parents who are there. Looking at all the babies; a micro preemie who had been there a while whose mother had six other children to care for who couldn't be there 24-7, the baby who had a meth addicted mother, whose grandma came to visit every other day, another baby born a little early whose mother couldn't make it to their hospital in time, who had to make a pit stop here.  And then there was Ronin.  The baby who maybe had Down syndrome.  The longer we stayed in the NICU, the less of a chance his blood test would be negative.

Day 4 in the NICU, we received Ronin's genetic results.  The head nurse came in as soon as she saw that Jakin had arrived for the evening. He words were quick, " His genetic test was positive for trisomy 21. I'm sorry."  She handed us a packet of info then high tailed out of our room.   Days before, I had never in the 8 years of knowing him, have ever seen him cry.  We both cried when she left but then the most amazing thing happened to me.  The weight of sacredness had been lifted.  Like watching a bird fly into that brilliant  distant sunset,  it flew away.   God had set things into motion at that very moment.

My heart was not mine but His and He had plans for it.  

 Just like how He has a plan for Ronin.