Thursday, November 4, 2010

Like a Snow Globe Turned Upside Down

I write for Caleb...
Today, I am chasing a busy two year old with a bag of Halloween candy in each arm around the house. He is a bundle of energy, feisty, all smiles and giggles and sweet, sticky kisses. He is my delight, my precious baby boy who changed my life two years ago in ways I am still seeing unfold.

Today I sit for a minute and I remember how far we have come in two years; he as a determined, tenacious fighter, and us as his family, his support system, his prayer warriors and his cheerleaders.


Today I write for him, my baby boy, my fourth child, my only son, who came so early into this world; born at 28 weeks weighing 1lb and 11 oz and less than 13 inches long. My baby boy is now a toddler, and we are out of the life-and-death mode of his early months. He no longer struggles just to breathe or hold his temperature. He is no longer fed through a tube, or given platelets and blood transfusions. We haven't seen an operating room in quite a few months. We attend more well-child visits than sick. He is finally on a growth chart for both height and weight. I celebrate all of these accomplishments.


As he continues to grow and develop, I feel myself exhaling, letting out a collected breath held for so long. He took us on quite a journey, this little miracle child; ups and downs and an endless cycle of good days and then bad days, and then very scary, we might lose him days.


Those first few months in the hospital were the worst days of my life and also the most precious days of my life.


My mother's heart was torn between wanting to spend every minute with my new son, and also wanting to be present for my three beautiful daughters.


It was hard to adjust from my anticipated, expected birth to a rushed delivery and a baby hooked to tubes and monitors that kept him alive. I didn't meet my son for 18 hours after his birth. I didn't hold him until he was five weeks old. I was never able to nurse him but did spend hours upon hours pumping breast milk for him.


I wanted a healthy happy baby, a calm birth, a joyful welcome into our family. Instead, we had a very sickly baby, a scary, troubling,emergency birth, and a chaotic introduction of siblings.


My girls spent months shuffled between family members and only infrequent visits with their much anticipated baby brother. I missed the first day of first grade and fourth grade, actually the first nine weeks of school for them. I missed evening dinner conversations, talks about teachers and friends and school events; so much of everyday life was tabled, put on hold as we spent time, energy, and money to will our son to fight and live.

We brought our son home from the NICU three months after his birth on Halloween weekend. My husband and I once again adjusted to having a newborn in the house, the lack of sleep, the endless laundry, the dirty diapers, lullabies, tiny, infant sleepers, and nights spent in a rocking chair.


Just days after he was home we headed back to the hospital for an emergency surgery and spent two more long weeks in the hospital.

Our daughters struggled with separation anxiety and some anger and jealousy issues. But I also saw how much this family crisis shaped each of them in remarkable new ways.


Our family is more understanding and encouraging, more patient and also more in the moments of life now. My daughters are their brother's biggest cheerleaders. Each milestone Caleb has reached has required much work and determination and each one is not just noticed but celebrated. My girls spent months on the floor with him for tummy time, months learning physical therapy assignments to enjoy with him. They have endured countless schedule adjustments as Caleb's needs for therapies have grown (speech, occupational, and physical therapy.)

Our family life has changed. We have grieved for time and dreams lost. We have adjusted to meet Caleb's needs. We have had to provide grace to each other as we each face the way prematurity has affected us. It isn't always easy to provide grace when you are hurting or confused or angry.


None of us are happy about how our life was changed by prematurity. We wish Caleb had not been born early, but healthy and full term. It saddens me to see him still struggle years after his birth. He still faces unknowns in his development.


I've adjusted to a new role, that of a special needs mother. I haven't always been accepting of this title, I haven't always worn it well. I didn't want to be a preemie mom. I didn't want to be a special needs mom. I just wanted to be a mom; a mom to three amazing daughters and one prayed for, much anticipated son. I think in the last two years as I watch my hopes and my dreams get shuffled, displaced, changed, rearranged, that I have realized it is enough for me to be a mom, the rest of the label doesn't matter as much.
My heart is full of love and pride for my sweet children, for how far we have come in spite of the obstacles we have faced.


One in 8 babies in the US are born prematurely. This statistic is heart-rending to me. One in 8 families will go on a heartbreaking, life-changing, breath-stealing roller coaster ride of prematurity. A ride that often times has lingering and long term affects. Families are forever altered by prematurity. The strain is felt physically, emotionally, spiritually, and financially.

Before Caleb I was unaware of how troubling having a preemie could be. Two years after his birth, I feel as though our family was in a snow globe turned upside down and we are still waiting for everything to settle. The acceptance, the moving forward, the hope it all comes in stages.


Christina Craven

2 comments:

MoDBev said...

I love your post and the title is perfect and so true. Thank you so much for sharing your story and participating in the Fight for Preemies. It is amazing to read all of the posts that are coming in today.

Susan Bearman said...

Thank you for sharing your beautiful, honest story. Our twins were born at 24 weeks. People often said: "I don't know how you do it." Well, we didn't have a choice, but reading your story about having a preemie with three other children at home, I find myself thinking: "I don't know how she did it." We spent five months on the NICU, where I, too, became a preemie mom and later a special needs mom. I am sharing the journals I kept during that long NICU stay at Mike&Ollie: 24-weekers Who Beat the Odds. My twins are now 19 years old and happy, healthy young adults. My daughter is away at an elite east-coast college. My "special needs" son is taking two classes at a community college and in a transition program through the high school learning to advocate for your child, to navigate the system and to take advantage of available resources is a daunting yet ultimately rewarding parenting experience. I wish you and your family all the best on your journey. Please let me know if I can help in any way.