It’s 1:00am and I am in bed listening to my dear daughter cough her lungs out. It reminds me of all we have been through with this horrible ailment they call “Asthma”. She is in a bout, but it is mild compared to what we have been through during the last almost eight years of her life….
From her first horrific beginning of this journey, it has been an intensely exhausting terrifying experience. I could write pages on her long struggle, but I will only tell a short story instead of a novel.
Sit down, grab your coffee or tea and let me take you on our journey… it’s heavy.
She was only 18 months old, and gasping for air….I was holding her pacing with hysterical anxiety in the ER in Florida praying and crying for help. After the RSV diagnosis and days of medicines, and breathing treatments…she healed. The nightmare was over….she survived….I survived. It was awful.
Her life had just begun, and so did this awful debilitating ailment. There have been countless doctor appointments, ER visits and urgent care treatments to follow in her young years. As unending medical “remedies” all failed, this was our hopeless and helpless way of life. This terrible road has been excruciating to both her and I. And yet, we are here. We have come so far…. We have survived the agonizing hours and days and weeks of ongoing bouts that shake me to my core.
We all have those “raw spots”, don’t we? My greatest weakness is fear. My most profound disability is anxiety. Her life from the moment she was born and turned blue….has struck me to my core. Like lightening….Fear. Anxiety. Angst. Terror.
My deepest moments of despair lie in those circumstances that are still vivid and alive in my memory. Such moments I remember all too well…. I’ll just share a few:
Leaving my 2 year old in the isolated respiratory unit of Children’s Hospital at 2:00am, sobbing…after begging the doctors to please let me take her home. I was nursing my 5 week old baby boy, and had to leave her alone with strangers….tubes…hospital crib…. so tiny…so sick…her oxygen was just not going past 80 after hours of breathing treatments and shots of steroids. I had no choice. I had to leave my baby girl. I cried as hard as my screaming infant all the way home. I was grateful that my husband could stay with her….but only a mother can feel this pain. I was always the one that took care of her through those dark long nights while I tried to protect his sleep. He was our provider. He had his own nightmare of finding work. It was only in my most desperate moments that I would come into the guest room where he slept and jolt him to his feet begging for help. He jumped every time I would open that door, always expecting a crisis…..it was our way of life.
I flash in my mind to another snowy torturing night alone holding my baby as she clenched her chest and cried in her sleep coughing, wheezing, gasping. I knew full well where I was headed in the snowstorm. My husband out of town and my baby boy asleep…..so the nightmare unfolds. There was always that breaking point I felt that slowly crept in. The time that I dreaded would come. The time where what I thought was the worst was not. The time where I begged God for healing, and it didn’t come. The time when I pleaded for another answer. None. No doctor had it. No specialist had it. To this very day….after every treatment known….there is no solution to her relentless ailment. No answer. Hopeless.
I could never begin to give a number to the amount of hours, days and weeks I have held my child in my arms with a bowl while she gasped for air and praying desperate prayers for help. I could never begin to find the words for the hell we have endured. I can only use the description of my baby pulling her hair out in clumps to somehow convey the pain and the throttle of existence that rocked me to my core so many times. Her bald patches and all the clumps of hair I would find through the years was the deep reflection of the trauma she endured. I too, wanted to pull my hair out in clumps. I too, felt that unending crack in the earth that engulfed us for days without air. To this day, my chest tightens every time she coughs. To this day, I still find hair after a bout.
It’s not clumps anymore, and I don’t shake as hard either….
We manage. She has gotten stronger. Every time she starts, however, I still respond physically…clenched teeth, chest tightens, perspiration, blood pressure flies, pulse quickens. Mentally….oh no no no no…..I can’t…….no please…..help help…..God please no. Emotionally……angst….anger…..fear……anxiety. It’s been learned. I don’t know if that will ever change. I listen to her now, and I still tighten, plead, and tear up in anguish. I know it could be worse….I tell myself that all the time.
I am sharing this part of my motherhood for a reason…. I believe that I am learning how to survive my core “black hole”. I believe that it will never ever go away. It’s who I am. But this child was given to me and has led me on a journey of the most critical growth I could ever have imagined. I believe that through it all….all the pieces…..that came crumbling down inside of me over and over again…..somehow….continue…..to rebuild…..stronger…..more durable….refined…. a little….as our journey unfolds. All this time, it was all about her. And yet, I find that maybe it was about me, too.
There is this theme of motherhood that portrays a beautiful sentiment:
…”You were put here on this earth to be your children’s mother….they are a gift and you will teach them and grow them and help them find their way. You will direct their paths and you will guide them through learning and understanding who they are. You will care for them and provide for them all that they need in order to become the human being they were meant to be. You will challenge them and test them and allow them to fall, in order for them to be able to find their footing on more stable ground. You will show them that the make of who they are, is both worthy and worth working on….You will press upon your children, the beauty of their core, both in the dark places and in the light. You will be there with them through it all.”
What if, by chance…..It actually was the opposite?
…“You were put here on this earth to be your mother’s child. She is a gift, and you will teach her and grow her and help her find her way. You will direct her path and you will guide her through learning and understanding who she is. You will care for her and provide for her all she needs in order to become the human being she was meant to be. You will challenge her and test her and allow her to fall, in order for her to find her footing again on more stable ground. You will show her that the make of who she is, is both worthy and worth working on…..you will press upon her the beauty of her core, both in the dark places and in the light. You will be there with her through it all.”
Our children…. It’s not just about them. Apparently, it’s about us too.
Aubre Rice says
Oh my goodness, I was stressed and could feel your anguish just reading this! I love the way you write, it is so real and so touching. I don’t know you well, but I pray that we can become close friends. I feel a connection to you, as a mother, and as a woman. You are a wonderful mother and I only hope to raise my son as you have raised your children. I will pray for your daughter that God would heal her asthma. Remember, He is bigger than her ailment and he is a God of miracles. I pray that He will heal her and free you both from this “black hole”. Loved seeing you tonight!!
If your interested, I have my own “raw” and “real” blog:http://aubresrecovery.blogspot.com/
And my family blog: http://thericesworld.blogspot.com/
Kristi Campbell says
OMG I am so very grateful that you shared this with me and am utterly in AWE over both quotes. What if, my friend? WHAT IF??? What if they are here and we are here just as much for one another? What if??? My take-aways are awe, wonder, God, motherhood, that my son is here for me as much as I am for him, that we just do what we can, and that it is all terrifying and beautiful and so very very worth it. I can’t tell you how grateful I am for you sharing this post with me tonight. Really. I was getting ready for bed, saw your comment and figured I’d wait until tomorrow. Then, I saw the next comment, leading me here, and I’m so grateful. Thank you. Thank you a lot. Huge and beyond the thanks.
Oh dear mama friend, I am SO glad you took the time to read it… you are heavy on my HEART!!! And I want so badly to instill in you that peace in knowing that YOU and TUCKER were meant to be, and that every single detail is planned and in the making!
Thank you- oh thank you for taking these words in…to your precious weary and worried heart. I adore you- and I believe in my deepest parts of me- that this is TRUTH.
You GOT THIS. God’s GOT THIS. Tucker? He’s GOT THIS. Trust that.
Huge massive HUGS!!!!!! XOXOXOXOXO….
Kerri @ Undiagnosed but okay says
Oh my. I have chills. I came over from Kristi’s FTSF post (no I’m not a stalker at all). This post so resonates for me. I remember when Boo was in the NICU for her 4th night and the nurses convinced me to go home and sleep, see our other daughter. I left Boo alone. Alone. I left at 10pm, cried all the way home. When I opened the door my husband thought Boo had died because I was so upset. I left the next morning dropped Abby off at school. I must’ve looked a wreck b/c her teachers offered to drive me back into the city. I entered the NICU to find they had moved Boo without telling me to another part of the NICU. My heart stopped. Literally stopped. I have never gotten over that moment.
Anyway, I wanted to let you know that you are not alone. And while Boo’s health issues today are not nearly as overwhelming as your Daughter’s, you are not alone in your fear and your bravery.
I LOVE that you came over to read this Kerri!!! It means the world to me, and although this journey has been so so hard- you need to read how far she (and I) have come!!! My recent post is one big amazing celebration… ya gotta read it!!
Praying for your mama heart, my friend!!! And your journey… it’s all meant to be.