|lds.org Media Library|
I think back immediately to the time when our 5th daughter, Alyssa, was born with a cleft lip and palate.
We first learned of her cleft lip at birth. I had an on-going feeling during my pregnancy with her that something was not right. A feeling mothers cannot ignore, although we might want to. I honestly thought of anything and everything it could be, and mentally prepared myself for many possible scenarios.
Having a child with a cleft lip never crossed my mind because I thought they were only hereditary. The many ultra-sounds we had during the pregnancy only showed the perfect side of her face, so her cute little cleft lip did not show itself until her birth.
|Picture of my daughter Alyssa at 3 months old|
The birth itself was quite dramatic, and I 'll save you the details, but we ended up having an emergency C-Section delivery. It was so emergency my husband was not even allowed in. The doctors and nurses worked quickly to deliver our baby daughter. When she was born, the Dr. leaned over the blue screen which blocked me from viewing my own C-section surgery, and told me in a careful way, that my baby had a cleft lip. I remember saying "okay", but felt shock, numb, guilt, and devastated at not having a perfect baby.
How did this happen? What do we do now? How is this going to change our lives ?
Having a child with a cleft lip was so foreign to us. The doctor was kind and sympathetic and gave us many referrals and information on how to feed a cleft lip baby and all about the many surgeries she would need.
However, from the moment Alyssa was born, I could literally feel the strength of this tiny infant. I did not feel sadness, or pity for me or her. I would look into her eyes and there was a sense of recognition that we had known each other once before and that everything was going to fine. I could feel she knew something that I hadn't come to yet. I had no doubt that she was very aware. We were not as strong as she was.
The first thing we did was to turn this trial over to the Lord and began waiting on Him, although not so patiently at first. It was kind of a desperate needing more than faith. I learned that desperation is not the same thing as faith.
At 6 weeks old we scheduled her first surgery for her cleft lip at Primary Children's Hospital in Salt Lake City, Utah. It was February 25th, 1998. It also happened to be the date of the worst snow storm Salt Lake had seen in 20 years. We lived 3 hours away and drove out the day before and stayed with an aunt who lived a short distance from the hospital.
As part of the preparation for surgery, Alyssa had to arrive fasting. She could have water. Keep in mind...she is 6 weeks old! I was a nervous wreck with 6 week old fasting baby. On top of that, because of the snow storm, the 15 minutes drive to the hospital, turned into 45 minutes of white- knuckle driving. The entire city of Salt Lake looked like a parking lot instead of a road. It was a crazy day to be on the roads driving, and we had precious cargo on-board, on a serious top-secret mission. That is how critical this day felt for us. No snow storm, nor anything was stopping us from getting to the hospital for our daughter. It was our turn to have a perfect baby.
We finally showed up at the hospital, and Alyssa did amazingly well with the fasting. Once again. she was stronger in body and spirit than her parents. Miracles were on our side. However, we were already emotionally worn out, and wanting this surgery desperately for our daughter. RIGHT NOW was how we felt inside. Our situation was more unique, more critical, more needy than any other patient there....or so we felt. We were very self-absorbed. They honestly, couldn't perform this magic fast enough.
One of the initial steps prior to surgery is a check-up to make sure the children are healthy. It was in this initial exam, that we were told that our baby daughter had THRUSH, and would not be able to have the surgery until that was cleared up completely. Her thrush was so minor, I hadn't noticed it.
'Thrush usually develops suddenly, but it may become chronic, persisting over a long period of time. A common sign of thrush is the presence of creamy white, slightly raised lesions in your mouth - usually on your tongue or inner cheeks - but also sometimes on the roof of your mouth, gums, tonsils, or back of your throat. The lesions, which may have a "cottage cheese" appearance."-WebMD
It was the worst news we could have heard. We didn't take it well. We were upset.
We felt our world had come crashing in.
But, but, but, we drove 3 hours the night before to get here, in the worst snow storm ever.....
...and we have been waiting and anticipating this since- her- birth. We felt our circumstances were more special and more important than anything or anyone elses were. And more important than any medical obstacles.
Needless to say, WE WERE DEVASTATED....and angry, and hurt, that they wouldn't do the surgery for us that day. We weren't ready to accept our reality, and waited for the surgeon to tell these nurses what was up! However, that never happened. The hospital staff was sympathetic, yet their diagnosis was absolute. There was going to be no surgery for our daughter this day. It wasn't going to be happening. It seemed the windows of heaven slammed on us and we were all alone.
On top of that because of the harsh weather that day we were also completely snowed in Salt Lake. We couldn't even go home!! We decided to go to Temple Square and try to bring some joy back into our lives.
By evening, the snow cleared up and we were able to travel back home..although we were in the same place we were when we left. Still needing a surgery for our baby. Except now we were on a mission to get rid of this thrush that had turned our lives upside down.
It took another 6 weeks to get rid of the thrush. Alyssa was either allergic to every medicine we tried or it just didn't work. The only medicine that worked was Genetian Violet. [ If you are unfamiliar with this medicine, it is the color and consistency of purple ink and you have to paint their mouths with it. They look like they just ate a dark purple Popsicle].
This second 6 weeks was like an endless procedure waiting, trying everything, and waiting some more. It was a purifying, unifying, and humbling time as we learned what it meant to wait on the Lord in faith. Not faith in an outcome, but faith in Him.
It was during this time of WAITING that the Lord taught us, helped us, strengthened us, and made us into different parents. It was during this 6 weeks that we came to accept our daughter's cute little cleft lip. We became more patient and long-suffering as we waited on the Lord's time not ours.
From this experience I learned:
Waiting on the Lord is a choice... because HOW we wait effects what we learn and how we grow.
In fact, I don't think I am ever NOT waiting on the Lord for something. We are dependent upon Him for everything. Everyday.
What does it mean to wait on the Lord? Here is an excerpt from Elder Hales talk:
In the scriptures, the word wait means to hope, to anticipate, and to trust. To hope and trust in the Lord requires faith, patience, humility, meekness, long-suffering, keeping the commandments, and enduring to the end.
To wait upon the Lord means planting the seed of faith and nourishing it “with great diligence, and … patience.”
It means praying as the Savior did—to God, our Heavenly Father—saying: “Thy kingdom come. Thy will be done.” It is a prayer we offer with our whole souls in the name of our Savior, Jesus Christ.
Waiting upon the Lord means pondering in our hearts and “receiv[ing] the Holy Ghost” so that we can know “all things what [we] should do.”
As we follow the promptings of the Spirit, we discover that “tribulation worketh patience” and we learn to “continue in patience until [we] are perfected.”
Waiting upon the Lord means to “stand fast” and “press forward” in faith, “having a perfect brightness of hope.”
It means “relying alone upon the merits of Christ” and “with [His] grace assisting [us, saying]: Thy will be done, O Lord, and not ours.”
As we wait upon the Lord, we are “immovable in keeping the commandments,”knowing that we will “one day rest from all [our] afflictions.”
(Alyssa waiting for Grandma to come when she was 2 years old)
Other posts about Alyssa:
Good, Better, Best in Motherhood
A Handbook for our Dad
Modesty is Vague? I don't think so!