It was a cool October day when I was blessed with my sweet little girl Jessica. The trip to the hospital that day was full of anticipation and excitement knowing that I would return in a few days with a new little pink bundle to grace my home.
I think, even being my fourth child, I took the birth process and the baby inside of me for granted never giving thought to the fact that something might be wrong….something may not have went quite the way that we were expecting.
I labored throughout the day…the day seemed to take forever.
As the evening approached, things began to move faster. What started to be some concern raised by a nurse ended up with a rolling rush down the hall to an operating room to take my sweet pink bundle from me because her heart was failing. I was devastated lying on that bed. I prayed for the life of my baby and I mourned for the loss of this perfect birth experience that was fading before my eyes. I was scared and I felt alone, though surrounded by many working on this or monitoring that.
I was quickly sedated and my little girl was born C-Section. There were no moments spent with her…no sweet kisses. They rushed her off to the NICU after telling me that she was really small compared to my other babies and that there had been an umbilical defect. Paul was such a source of strength for me, but I know that he must have been as terrified over what was happening if not more so, because here was his young wife on an operating table and his new little baby in the intensive care unit.
The next couple of days were filled with a whirlwind of activity. We made multiple trips to the ICU to see our daughter. They did allow her to stay in our room some but were watching her very closely. The mornings in the hospital we were asked to come and line up with the other parents and their little babies that had “special” circumstances so that one by one the neonatologist could speak to us about what was going on with our children. One by one, each parent talked with the doctor….the couple in front of us had a son born with an extra finger. We stood in line quietly and listened to the Dr.’s words and the parent’s reactions. It was hard to be excited about a new birth in the midst of so much wrong.
It was finally our turn. The neonatologist pretty much went over what we already knew….she was very small, she had a single umbilical artery, she had a cyst but she seemed O.K. to him, other than those things. Then we started hearing “the rest of the story”. He explained that single umbilical arteries are usually indicative of other things. He said that in the future, we might want to check out Jessica’s kidneys because she might have one kidney or there might be one horse shoe shaped kidney. Either way, there was no reason to worry unless there was a problem. Paul and I insisted that they do testing to make sure that her kidney’s were O.K. We were so relieved to find out that they were normal and felt like maybe it had just been some fluke and that yes, we had experienced some weird things, but now she was here and things would be better for her from here on out.
We were so fortunate to take her home. I wanted to kiss her and I was so thankful to the Lord for her. She was so tiny and sweet and she was mine.
Nine days after she was born was our first “encounter” with what we didn’t see. I was nursing her when she had her first post birth arrhythmia and complex partial seizure. I thought that she had died in my arms. Literally, a cold, gray and lifeless baby, I cried out to God….I couldn’t let my little girl go. When I realized that she was indeed still breathing, I felt such a relief flood over me. We had her seen by her Dr. who told us that maybe she just had a little tummy ache and to watch her.
The next few years brought about many of the episodes.
At first, it was just me who would see them.
If you knew me then, you would understand why when I was once a parent who would listen to everything my doctor said, this experience has changed me. I found the best doctor….we have a relationship and an understanding. This is my child…if I tell you that something is wrong, I expect it to be taken seriously. If I disagree with a method of treatment, I expect that my wishes will be weighed and that I ultimately make decisions on my daughter’s behalf. As her mother, I am her best advocate.
There was a time, when I was actually accused of abusing Jessica.
Her neurologist, who had never seen her seize, actually asked me in front of my other children if I had thrown her against the wall. She said “they see children all the time who are turning colors and we find out later that their parents have been slapping them up against the wall”. She also asked one time if I was catholic. She said that it had been her experience that only catholic parents were this concerned about their children. I’m still trying to figure this one out.
Over time, others began to see these “episodes”. It was the day that the ER staff witnessed one of them that she was diagnosed with epilepsy (but not before being told on the phone that there was really no reason to bring her in because she had been at the park that morning and she probably just needed to go home and take a nap). Her neurologist came into the ER room and said “well, it looks like you are right…Jessica will need to be put on anti-seizure meds”. I was furious. I looked up at her and said “You need to remember this moment. You have chosen to accuse me of the unthinkable….don’t ever tell a parent that you think that they are abusing their child until you know for sure that you are right”. Needless to say, I grew tired of her very quickly and found a doctor that I felt like I could trust, and would make good decisions for my family.
Visiting this new doctor, Dr. Mattheson, was an eye opening experience. I wasn’t sure whether to feel relieved or even more frightened over my daughter’s condition. His suggestion to us was that with all of the events of her birth and the constant seizures (sometimes several a day) that he felt like we needed to go to the Kirklin Clinic in Birmingham and have genetic studies done. It was six or seven long weeks that we waited to receive the results of her chromosome study. The genetic doctor was fairly up front with us that they felt that she had some type of chromosomal “syndrome”. The day the phone rang I was on the sofa. I sat for a long time after that phone call. They were so very patient to explain that although she did indeed have normal chromosomes, everything that she had mimicked something called DiGeorge Syndrome, the differences being that she didn’t have the facial deformities associated with this genetic disorder.
About that time it was also suggested that we see a cardiologist. In my effort to find some kind of answer for my daughter, we agreed and went to meet with Dr. Walter Johnson at pediatric cardiology, here in Birmingham. He did a number of tests but it was during the echo-cardiogram that we first saw the first of her two heart conditions. He showed us by ultrasound the blood escaping from the little hole in her heart. He told us that we would need to watch and wait until she was five because we would want to consider having an Amplatzer Device installed to close the hole in her heart.
Watching Jessica as we left the hospital that day, was amazing.
This little girl, playing in the water sprinkler outside of this huge hospital that held our lives in their hands. “Would anyone ever really know how much this child means to me?” “I hope that they care and know that my life will stop if I have to say goodbye to this precious child after only knowing her for these few short years”. These are the thoughts and feelings that plague the heart of a parent who has a child with serious physical problems.
It would only be three short weeks before we were on our way to the emergency room again. This time following an episode picked up by the little heart monitor during a seizure that sent her heart racing over 300 beats a minute. It was explained that she might be going into cardiac arrest and at this speed, the human heart actually begins to skip beats.
We have since seen our daughter through a heart procedure that has changed all our lives.
I have learned so much from our experience and my daughter.
As a girl, I volunteered in a number of hospitals and at a camp for children with cancer. I can remember feeling that I shouldn’t talk to grieving moms in a waiting room. How could I ever have the words.
I’ve now been that grieving mom. I was right, there were no words that could have comforted, there was nothing that anyone could have done. What does help is to know that there are people around you who love you. What does help is to know that things in this life are so temporal. What does help is to know that some good does eventually come from these experiences. Eventually, you do meet someone that you can pat on the back and let know that you have been there.
It’s an awful thing. It’s an awful thing to live through.
So much sadness, and so much bad news.
I remember being a little girl thinking if Jesus could just wait to return so I could be married, see my children or even to see their children.
Those days are long past. There are day when I am surrounded by so much sadness that it feels hard to stand under the burden that sits on my shoulders.
I’m just going to list my prayer requests today….
Please pray for Nayda and Nate who have witnessed the birth of their first child, born with trisomy 18.
The Smith family, with three lovely children…the Dad, Troy, passed away yesterday after struggling with cancer for several years.
Please continue to pray for our finances. Things have been really tough here.
Today, I’m Thankful For
(These are the days that I really need to remind myself to be thankful.)
My daughter, who seems so healthy and wonderful and is now growing so strong.
This experience that has in many ways made me so much more knowledgeable as a parent.
Some blessings that came Paul’s way this morning.
Listening ears and strong shoulders yesterday. Everyone around me is so saddened for these families. It’s nice to be able to turn to each other.
The opportunity to be able to share this experience with others.
If I could ask everyone today to one thing it would be to pray for the two families above. Please pray that God would comfort them and give them wisdom during this time.
What I’m Learning
My daughter is one of the strongest and most compassionate people that I have ever met. I don’t just mean this because she is my daughter, I say this because I’ve watched her live through more than anyone I’ve ever known with grace.
Today’s Scripture Meditation
The Lord is so good to give us His promise during our darkest of times. It is only through Him that Paul and I were able to get through all that we did with our daughter.
I’m comforted when I read passages like the following:
“Trust in Him at all times, O people;
pour out your hearts to him,
for God is our refuge.
“He will judge the world in righteousness;
he will govern the peoples with justice.
The LORD is a refuge for the oppressed,
a stronghold in times of trouble.
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.”
“But let all who take refuge in you be glad;
let them ever sing for joy.
Spread your protection over them,
that those who love your name may rejoice in you.
For surely, O LORD, you bless the righteous;
you surround them with your favor as with a shield.”
On my knees,