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Ugly, regrettable truth be told, after my daughter was born I felt completely robbed from the amazing experience of first time motherhood.

I prefaced that statement with, “ugly, regrettable”; because I am horrified that I felt that way and ashamed to have thought that perfection was having my wistful dreams of motherhood, labor and birth become reality.

I was not robbed, I was not exempt from receiving a perfect gift in being a first time Mom. But the events leading up to the birth of my daughter made me feel that way.

Let me explain.

When we found out we were expecting, we were over the moon excited. We were also cautious and nervous that something could go wrong during the pregnancy. It was so hard to conceive and we were nervous it could all be lost in miscarriage. It really never occurred to us that something could go wrong after birth.

I enjoyed my pregnancy and the idea of being a first time Mom. This event would never happen again, sure, I could have another child, but it would not be a first.

I would never again be so blissfully unprepared in motherly knowledge. I would never again be treated like a queen (that’s how they treat pregnant women, first timers, anyway). I would never again need to learn the intricacies of breast pumps, nursing, feeding, swaddling, diaper changing, etc.

It was all so brilliantly new and exciting. The anticipation and longing for having our little girl in our arms was the only thing that had our focus.

We visited daycare centers, checked out pretty baby equipment, folded tiny little clothes and made all the preparations for our little bundle of joy to join our family. I think my husband coined this exactly right when he said, “You can be prepared for a baby but you will never really be ready“. We found that out after our angel was born.

All of the pretty pink, lighthearted joy and sweet expectations of being new parents came to a screeching halt about 1 minute after Delainie entered this world. We were told, “Don’t be alarmed, but she has extra digits and it looks like her spine did not fully close. We will have the pediatrician come in and check her out to make sure she can go to the regular nursery”.

What?!?!? I was stunned, not joyful. I was horrified, not elated. I was scared, not over the moon. It was NOTHING like I thought it would be. It was NOTHING like the TV baby stories of the baby being handed to the Mommy: a picture of a new and happy family with tears of joy in the Mommy and Daddy’s eyes and beams of love for each other and their new addition.

It was a different picture for us: fear, worry, disbelief and sadly, yes, I admit it, on some level, utter disappointment.

I wanted the fairy tale that I pictured. Most Moms get their babies and count their little fingers and toes to be sure there are ten and ten. No one ever thinks there will be twelve and ten!

After the initial shock, I got back to the task at hand, reveling in the fact that I was a new Mom and had a 7lb 19 inch baby girl named Delainie Renae!

But, that was short lived too. After a while, I realized in all my elation, that Steve and Delainie were not coming back to the hospital room. Finally, I found out that she was taken to the NICU.

No, no, no. This was not how it was supposed to be. For the first 24 hours Delainie fought for her life with the help of the medical team in the NICU and prayers. I crumpled up and yelled to God, “take me, take me, just let her be okay, take me”. My husband was frozen in fear at the prospect of either of us being lost to him.

After that first 24 hours, we had an induction into parenthood that no one ever talks about when you are pregnant (thank goodness, I guess). Our dreams were more like a nightmare. We were on a roller coaster of joy, love and insurmountable fear.

We started our journey as parents with a child that was nothing we ever asked for, nothing we ever dreamed of but everything we never knew we wanted and more.

Having a medically complex child with long hospitalizations and much uncertainty for her future was tough. I wanted to be like other moms, exhausted, nursing, cuddling, strolling, showing off my new little bundle of love. Instead, we were plagued with moments of paralyzing fear as our daughter stopped breathing, we got tangled up in the cords she was hooked up to in the hospital, we spoke to doctors at all hours of the day, we prayed like we never prayed before.

After almost three years, I am happy to say that our daughter, with the support of her adoring parents, loving family members and prayers of friends and strangers, has defied all the odds she was given in those first few days of life. She is a trouper. She is a child with an angelic face, courage forged in steel and a spirit that cannot be broken. I am in awe of her every day.

She still has medical complexity and many special needs but we couldn’t be happier.

Thank goodness not all dreams come true. If my dreams came true I wouldn’t have the life I have now. Thank God that there is room for the unexpected. Thank God that we were chosen to be Delainie’s parents. We know that we were not robbed like we initially thought that “labor” day.

In fact, we were given more than we could have ever dreamed. We were given a gift so precious and wonderful, so inspiring and life changing.

I am glad that I did not get a choice in parenthood. We all know, if given a choice between giving birth to a child with a laundry list of medical and developmental issues and a child with a clean bill of health and a great developmental stride, you would pick the later. That is all you want for your child when you are pregnant, “I don’t care if it’s a girl or boy, as long as it’s a healthy baby”. Right?

Well, I would have never chosen to have a medically complex child with global delays. It’s the truth. Thank God for unanswered prayers, thank God for strength and perseverance. Thank God for choosing US to be Delainie’s parents. Thank God for having the faith in US to be the best match for our little girl. Thank God for letting us learn that the rewards are so much sweeter when the challenges are that much greater.

We are blessed beyond measure, we have been given a very special gift and that makes us very special parents. We were not special until Delainie came into our lives. She makes us special. Being a parent is freaking hard! Being a parent to a special needs child is FREAKING AMAZING and FREAKING HARD!

For parents everywhere, I commend you on your journey, each journey is special, the needs required along the way are just different. The difference between special needs parents and other parents is not much. ALL parents deserve respect and admiration for the little lives they nurture; but, special needs parents also deserve acceptance for who they are, who their children are and the family differences they embrace.

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