Love will carry you-from a NICU mama.

I could barely focus. My mind trying to slow down. To comprehend it all. I didn’t know that babies could be born this early and survive.

I didn’t want to know the statistics. I didn’t look up stories of hope or google any diagnosis-not right away. It was too much. All I could process was one thing at a time in that moment.

They were alive.

I didn’t know what the days ahead would look like, so I focused on the minutes instead. New problems arose every couple of seconds. And so I prayed. Each new complication was a a burden I gladly carried, if it meant they were still breathing.

Every organ was premature. Being artificially maneuvered to provide bodily function. A ventilator and airway to breath. A feeding tube to eat and give the intestines enough stimuli to function. A intravenous line for fluids and medications. A arterial line for monitoring of vital signs and adequate perfusion of their delicate organs.

Every life saving measure was not without risks. Too much oxygen and you risk damaging the blood vessels in the eyes causing blindness. Too little oxygen, you risk brain damage and failure to vital organs.

It was a balancing game.

I often heard the doctors say that Neonatal medicine was much more of an art than a science.

It is also often described as a roller coaster. Everything can be going smooth, and then one infection or a single new disease-such as necrotizing entercolitis-could be fatal.

You live every day “on edge.”

And then, at some point you are faced with the very real possibility that your child may have developmental delays, Autism, ADHD,  cerebral palsy, etc… None of which could possibly devalue the love you have for your child, but frightening nonetheless.

But in those moments. None of that matters. And honestly, when your child has gone through so many near death experiences, or when you lose your baby in the NICU, your perspectives shift.

You are never the same.

You are more tender.

You see your child go through so much.

Cranial ultrasounds. Chest x-rays. Blood draws. Surgeries. Suctioning. Pain.

The NICU is extremely busy and incredibly scary.

Life as you know it is on stand still.

Friends may think you are distant. People don’t understand the intensity and validity of your pain. But I understand.

I remember vividly walking down the hallway back from the cafeteria towards the NICU. I couldn’t eat. I was wearing a black maternity shirt that hugged my postpartum stomach, yet all I could see was an empty womb that screamed betrayal. My body had failed my boys, at least that how it seemed. I had pink striped pj pants on because it was all I had at the time to wear. I looked disheveled, and I didn’t care. I walked slowly. Counting my steps. Face to the ground. My body was numb in disbelief.

I washed my hands up to my elbows in the sinks by the NICU doors. And as it always did, my heart dropped as those doors opened.

I would walk those NICU halls over a hundred times. Those sterile smells. The alarms that I could hear in my sleep. I didn’t feel much like a mother.

Not until the NICU nurse told me I could touch my baby.

img_0018

The nurse slowly pulled back the snuggy that tightly held my Michael. And before my eyes was the most beautiful little boy. Hair so blonde. His arm the size of my pinky. His eyes still fused. My heart felI to my stomach. I couldn’t fathom losing something so precious. Lord save him I cried.

IMG_0013.JPG

He was so fragile. Fighting with everything to live. I wanted so desperately to take his place.

A similar scenario played out as I saw Malachi. He looked similar to Michael, but also different. He had more petite facial features and was a little more bruised. Yet he was breathtakingly beautiful and stole my entire heart in seconds.

I would spend every day with them. Every moment that I could be by there side I was there. I tried so desperately to feel like a mother. Praying for them. Singing to them. Holding their tiny hands. I pumped breastmilk for them like it was my job. It was the one thing I could do that I knew was directly helping hem live and thrive. I read stories to them. I talked to them about my fears and told them how dearly I loved them no matter who they became. I changed their diapers, and helped the nurses reposition them. These seemingly “little” things meant the world to me.

NICU Nurses became family, and soon days became weeks. Weeks became months. February brought snow, and then spring was here.

By this time two became one.

Grief and numbness fell on me with intensity. Instead of fingers to hold I had a small blanket that once held my lifeless baby boy in it to cling to. It smelled of adhesive remover- the chemical used to gently remove the tape from his face after his heart stopped beating. But that blanket was the only tangible thing I had left to hold onto to. So I squeezed it tight, wishing that for a moment I could just breathe him in again.

And with the passing of Michael, a small piece of me also died.

But here I was. Gathering strength from wherever I could find it to fight for my remaining surviving boy.

IMG_2935

It is amazing the bond that NICU mothers have. While my primary source of sanity and strength arises from my Lord and Savior-an absolute strength beyond myself. There was a great amount of love and compassion that came from relationships with other NICU moms. Especially Micropreemie mothers.

They understand.

Each of our sons and daughters battle different fights.

For some reason some did not make it. But the journeys they gave us by allowing us to carry them in our wombs and give birth to them have forever changed who we are. Their fights to live inspire us, and while we cannot physically hold and love them, they live and breath through us. Surely we are so much better because of them.

And our little warriors who do come home. Their stories amaze us. They are not known by there limitations, but for their bravery and all the countless obstacles they overcame.

Malachi is certainly the greatest gift I’ve ever received. Ever fiber of my being is drenched in love for him.

The love we have for our tiny warriors will certainly overcome all fear we may have.

If you currently have a baby in the NICU, I am so sorry.  You are carrying a burden that is so tightly woven.

I know that a piece of you is having to grieve the hopes and dreams that you had for your pregnancy, and for the life of your child.

But mama believe me when I say, you are so strong.  So brave.

You will make it to the other side of the storm.  You may feel like you are in a fog, but soon the clouds will break, and the love that your baby brings to you will carry you.

So much love to you.

From one miracle mama to another.

img_3498

 

My intention. 

I hope you don’t mind my vulnerability and rawness.  

“Lord, please don’t give me a child with special needs.” 

I’ve prayed this prayer. 

“Mothers of children with special needs are courageous and well equipped. I’m not strong enough for that” I thought. “God will give me healthy children. I am his child, and I am blessed and highly favored.”   

Have you ever wondered if Gods plan for your life could actually be greater than what you imagined for yourself?  Yes, you may have to suffer for a little while, but what if that suffering gave birth to new life and purpose?

My intention after suffering grief is to love harder. To not take things for granted. I am a not the person I was before grief, nor would I ever want to be. Losing Michael took something from me. It ripped me to my core, and made me question everything in life. At first it made me bitter, but then my heart was softened and my burden was lightened. I was made for this moment. I needed to be stripped of all pride, to be broken down from within-so that I might know how to truly rely on the Father.  

So where do I go from here? My hope is to help others realize that Gods grace is enough. That even in your darkest hour, his love is sufficient, and his mercies are new. Yes, it is unfair. It aches to the core. But, with great pain, there comes great triumph and healing.

My intention is to turn my pain into something well formed. I will never take Malachi’s life and his abilities for granted. Yes, his life involves struggles, but he is alive-he is my child and he is loved. Forever he will be loved. I am a mother of a child with special needs. You make it because you have to, not because you are “strong.”

I am a mother of a child that died in my arms. I have grieved until my heart felt shattered. I have cried enough tears to fill the oceans deep. But I am here, and I have purpose. My intention is to be more than a survivor, but to be an overcomer-through Christ. This is my intention. 

My calling is more than just writing. If you would like me to speak at a small group at your church, an event for grief support, a Wednesday night class or service-please contact me at allisonstone0422@yahoo.com.  I would love to share my story, about how God has given me new life, even in the mist of bitter suffering-and how he can do the same for you.  His grace is enough. Period.