Monday, November 22, 2010

What WereYou Doing on Monday, November 22, 2004?

Some of my long time readers know that my daughter Ada, aka “Captain Chaos,” was born with a congenital heart defect that almost claimed her life when she was four months old.

Ada - September 7, 2004
2 1/2 weeks prior to her diagnosis

Two days after the condition was diagnosed she suffered a heart attack and a stroke and was placed on life support. Three days later she underwent successful open heart surgery to repair the defect. That began the long, challenging road to recovery. It is a road we still travel and a journey well chronicled.


Ada - October 2004

Six years ago today, we brought our daughter home from the hospital. That was no simple task. We still did not know whether or not her heart would recover enough function to sustain her life, let alone allow her to live anything close to a normal life (or if you prefer, an average life). We were thrilled to have our daughter back home. She had a nasty bedsore on the back of her head that required careful treatment. We had a challenging feeding and medicine schedule that kept us busy from early in the morning to late at night, but I was fairly confident that we could handle it as I spent the previous weekend at the hospital training to do it under the supervision of the nursing staff. Ada “ate” all of her food and took all of her medicine through a feeding tube hanging out of her abdomen.

Ada - Late November 2004

Looking back, the hardest part of that first night was the fact that a few of her meds had to be mixed by a compounding pharmacist. A compounding pharmacist is a pharmacist who can mix medicine from a recipe rather than dispense premade drugs from a container. I did not understand this completely when we arrived home and I called St. Joseph’s lone compounding pharmacist to see if we could get her prescriptions filled, only to discover that they were scheduled to close ten minutes later. I had assumed the prescriptions were like any standard prescription, and could be filled 24/7. In a panic, I jumped in the car and promptly drove to the wrong pharmacy. I remember thinking, "What will I do if they close before I get the prescriptions filled? She can’t make it through the night without her medication!" When I finally arrived at the correct pharmacy I discovered that most of the meds had already been prepared because the hospital had called earlier in the day. The pharmacists were more than happy to remain open a little late and fill our order. Our co-pay looked like a car payment.

Ada remained awake until six a.m. that first night home. I wrote in an e-mail that “She is fascinated by the red bedroom walls. She seems to enjoy her old spot on our bed. She stared at and played with the toys that attach to her bouncy chair (she can see up close - real close - better than the doctors think she can). She also gave her mother a couple of big smiles. Mom and Dad think that Ada is going to thrive here at home.”

Today, it feels like another life in a distant time.

It’s kind of standard at this time of year to write something about being grateful and giving thanks for our blessings. Then we kill a large bird and eat it. Most years I by-pass this tradition and head straight to the killing and the eating and the food coma; however, this entire fall I’ve kept one eye on the calendar while asking myself, “What was I doing six years ago today?” This year each date falls on the same day of the week as they did six years ago.

Last week I sat at my kitchen table and worked with Ada on learning how to add single digits. It was a long, laborious process that she did not fully understand, but willingly worked at. Of all my children, teaching Ada is the biggest challenge, but it is a challenge that I willingly take. She’s here to teach. That’s all that matters.


I don’t know why God chose to bless our lives as He did six years ago, but I am grateful that He did. I could write a thousand words and never come close to expressing what I feel, so I only write a simple “Thank you," and publicly share what He did for us. All glory and honor belong to God.

11 comments:

Anonymous said...

Wow, great post - and you sum it up perfectly..."all glory and honor belong to God". Amen! How good He was/is to allow you to keep (raise, teach, love) your special little Ada! (Happy Thanksgiving, and Hi to The Boss!) ~Jill

Becky said...

Arby, I had no idea that your precious little one had gone thru this! Praise God that she is a healthy and active little girl now. I know of someone whose baby just had open heart surgery this past week. I don't know all the details, but I beleive the baby is about the same age as your little Ada was. I may have to pass your story along to my friend, so that she can pass it along to the baby's parents. ~ God Bless you and your family and Happy Thanksgiving!

Oklahoma Granny said...

Our God is an awesome God!

Anonymous said...

Great blog, Rich! I remember telling Paul once when you were going through this, "if she's even half as stubborn as her mom, she'll be just fine!"

Anonymous said...

Ooops, that last post was by me, your favorite sister in law- Jane

L. said...

This is indeed an extremely special day. I wept when I first read today's blog as memories came flooding back. If any critically ill baby had the right parents to love and care for her very special needs, it was Ada. You and the Boss were specially chosen and you've never let HIM down.

THANK GOD. PRAISE GOD. ADA, WE LOVE YOU!!!

Arby said...

Kind words, but unfortunately, I've let Him down more times than I care to remember. That makes what He did for us that much more amazing!

jugglingpaynes said...

What a wonderful gift you were given. It seems to me she's here to teach you as well!

You should have figured someone with that much fighting spirit would be a challenge once she got her health under control. I know this, because I have a similar spirit in me and my mom could tell you stories about my strong will growing up. Some accept their condition and some insist that their condition won't control them. :o)

Peace and Laughter, Enjoy a blessed Thanksgiving!

L. said...

Arby, that makes two of us but repentence, belief in His forgiveness and love, and living the process of learning not to make the same mistakes again brings us closer and closer to Him. He never stops giving.

Laanykidsmom said...

Thanks for your comment on my blog. I know heart parents "get it" without ever having to say a word. My daughter's surgery anniversaries are both in October, and my husband always takes her out to eat (and maybe do a little shopping!) to celebrate her life. There's something about those surgery anniversary dates that make us pause and give thanks more than any other date. Your daughter looks spunky and beautiful. Happy Thanksgiving!

TobyBo said...

I am thankful.