March 30, 2015. The best day of my life.
My husband, Wes, and I welcomed our first baby, Graham, into the world! The next 6 months were all of the typical first time parent milestones. I remember driving one day with Graham asleep in his carseat thinking how wonderful my life is. “I have everything! A husband I love, a beautiful child, my dream job, we’ve just moved into our forever house, a wonderful church.” How blessed am I?
Then, for a reason I didn’t know at the time, my thoughts went to something Pastor Marty said in a sermon “You’re either in a storm, just coming out of a storm, or about to go into a storm.” I tried to think for a moment which described me, but then we got to our destination and the thought left my mind.
Little did I know I was about to enter a storm that I’m still in today.
Psalm 107:29, “He calmed the raging storms and the waves became quiet.”
This part could be a much longer story, but I’ll sum it up: at Graham’s routine 6 month check-up the pediatrician was very concerned about his muscle tone and highly suspected he had pneumonia.
We were admitted immediately to the Children’s Hospital of Georgia where eventually Graham was diagnosed with a genetic disease called Spinal Muscular Atrophy, which is basically ALS in babies, but so much worse. There are different types, we learned, and Graham had the most aggressive, the most deadly, Type 1. About 90% do not make it to their 2nd birthday, however when we got the official diagnosis we were told “you have maybe 2 months, he might make it to 1 year if we’re lucky.” We made it 10 more months.
2 Timothy 4:17, “But the Lord stood with me and gave me strength.”
The main concern (there were so many) was Graham’s ability to breathe since his muscles were always working overtime to complete basic life sustaining tasks.
Graham was unable to swallow without aspirating into his lungs, so he was tube fed. He was unable to clear his own secretions so he was suctioned around the clock. He was unable to cough, so we had a machine that did that for him. All of a sudden our lives stopped and everything was about keeping Graham well.
If you cannot cough or handle your own secretions then getting a cold is very serious. For Graham, it was life threatening. Therefore, anytime he had a cold we were in the hospital. At first we were in a ‘regular’ room, but as his disease worsened each trip was to the Pediatric Intensive Care Unit (PICU).
James 5:15, “The prayer offered in faith will make the sick person well.”
We made such frequent visits to the hospital (almost always in an emergency situation) we had a hospital bag packed at all times with pajamas, a change of clothes, travel toiletries, and all of Graham’s medical information. Those were the basic necessities. Fortunately, we also had friends and church family who would bring us all the luxuries the PICU rooms don’t offer, and more importantly, let us know we weren’t alone.
Each hospital stay became longer and longer and eventually we were experts in converting a sterile hospital room into a makeshift living room, dining room, bedroom, and little boy play room. A list organically formed of all of the little things that make a room with tons of medical equipment and 1 chair feel the most like home.
Galatians 6:2, “Carry each other’s burdens and in this way you fulfill the law of Christ.”
While in the cumulative month that we spent in the hospital, I also noticed other families. It’s impossible not to.
I would see families come in after an accident, having no indication when they started their day that it would end in the PICU. Most I didn’t talk to, just exchanged sympathetic glances. Until one night, I walked into the waiting room for a drink from the vending machine.
I saw a woman sitting alone on the couch with the hospital breast pump sitting beside her. In the early days I was pumping in the hospital too and let me tell you that adds a whole other level of uncomfortable to a hospital stay. I asked her if she wanted a drink and she came over and we started chatting. Her baby was on life support, I can’t remember how old she was but she was very tiny.
The woman told me her story of feeling pulled between her 2 other kids at home and the PICU, how she and her husband just pass each other either from work or handing off children. She cried as she told me her story. I cried with her. There was nothing I could do to make her situation better, but I could tell she was grateful for the gesture and more importantly someone to talk to.
2 Corinthians 1:3-4, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”
I don’t know what happened to this woman or her baby but I do know there are so many more with different details but the same story. That’s where the idea for hospital packages for caregivers (for Teddy Graham Thursday) came from.
There are so many programs in place for the children in the hospital (which are wonderful) but many kids, including Graham, can’t benefit from them because they are so sick or so young. Many times the caregivers in the most stressful situations are forgotten.
The care packages for Serve Augusta Week will make such a difference in the lives of the parents, to know they are not forgotten, they are remembered and loved. The smallest gesture can make the biggest difference in the lives of those who are hurting.
Matthew 25:40. “And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!'”