June 29, 2010

I Didn't Know What I Didn't Know

Tomorrow my precious daughter, A, turns 4.

While tomorrow I will be celebrating how far she's come, and how miraculous her life is, today I am reflecting on who I was four years ago today. Because, you see, four years ago today I was innocent.

The day before my daughter was born, my primary concern was about my son, D. He had just turned 2, and I was very worried about how the addition of a new sibling would affect him. I had heard all the advice about how to get the older sibling involved in caring for the newborn....helping to feed a bottle, change a diaper, give a bath. How could I have known that D would meet A a total of 2 times, in the hospital, before she was whisked away to the NICU where he would not lay eyes on his new sister for 12 more weeks? How could I have known that D couldn't help with a bottle (she came home getting 100% of her nourishment from her g-tube) or give her a bath (her trach necessitated VERY careful handling in the tub on my part).

The day before my daughter was born, I had rarely considered that kids can have prenatal strokes. Sure, in a previous life I had worked doing language research with kids, and one population that we did language testing on were kids that had had strokes...but really, in my mind, strokes were largely for older people.

The day before my daughter was born, I only thought about cleft lips in reference to the Smile Train ads I saw on tv and in magazines. You know, kids in third-world countries. It never occured to me that my own child could be born with a cleft lip.

The day before my daughter was born, I'd never heard of the word "stoma", let alone had to learn to care for two of them and the tubes that are inserted in them (her g-tube and trach).

The day before my daughter was born, I assumed that I would have another healthy child, much like my son, who is healthy and typically-developing. I wouldn't have believed that my daughter would be born with a heart defect, a balance impairment, deaf/hard-of-hearing, and vision-impaired, among other birth defects she has.

The day before my daughter was born, I thought that NICUs were for other kids.

The day before my daughter was born, I didn't fully know and appreciate the power of prayer.

The day before my daughter was born, I was incomplete. I didn't know it at the time, but having my daughter filled the missing void.

The day before my daughter was born, I had no idea how strong I was. I had no clue the type of mother I would be expected to become. I didn't know I would have to become a therapist, teacher, and advocate as well. I didn't know that I could suffer hearing bad news heaped upon bad news in the NICU and still get through the day. I knew I was an optimist, but I didn't truly know that I would always look for the silver lining.

The day before my daughter was born, I had no concept that some kids don't develop with a little bit of help from their parents. Some children need their parents, physical therapists, occupational therapists, speech therapists, developmental teachers, a team of physician specialists, hearing aids, glasses, walkers, feeding tubes, breathing tubes, and sheer will power to develop.

The day before my daughter was born, I was selfish. Yes, having my son made me less selfish--you can't be a good mother and be totally selfish at the same time---but having my daughter made me put all of my needs and wants aside and focus solely on what was in the best interest of my baby.

Tomorrow I will celebrate the miracle of A's life. Today, I remember the innocent, care-free mother I once was....and know that because of my daughter, I am a much better person today. Thank you, my amazing girl.


  1. Congratulations to your whole family on Aria's 4th birthday! Kelly posted a nice video siblings at Jenelle' journey. Jocalyn at Kendall's Hope also posts on her kids's relationship.

  2. It's sort of a birthday for both of you I suppose. A for obvious reasons but for you too, a rebirth of sorts. You changed that day, because you had to, but also because you loved her. I've said it before, not every mother would be as strong as you were/are. You both were lucky to have found each other. She's thriving in ways no one could have imagined that day four years ago, she's truly an amazing child and I'm so glad that I get to watch her grow-even if from afar.

  3. This is an amazing post! I am sharing it with my NICU parents support group.

  4. Wow! How honest...how true. May God continue to bless your family & give you all the strength you need each day.


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