Our Journey to an LGS Diagnosis
Andrew is our first child. I always point that out because I was in such a different place then. A place where I did not question, I did not really think about what happens when a baby is born with difficulties. I know then I did not appreciate the simplest parts of my day. I would have never stopped back then to think that everyone has a story to tell, the great challenges they face. I recognize all of that and so much more now because of Andrew, and for that I am forever changed.
Andrew was born a full-term baby. His birth was excruciatingly long, after over 3 1/2 hours in the pushing stage Andrew was born at 6lbs, 12oz, and a little beat up, but the most beautiful baby to my husband and I. Andrew was having difficulty breathing in his first moments, but he was kept with me and then eventually taken to the well-baby nursery. I was exhausted after the two days of labor, but was more then ready to take on this new role of mom.
On Andrew’s second day, while attempting to nurse, Andrew turned blue. Our nurses rushed him to the NICU where Andrew would spend the next 14 days. Surprisingly Andrew was seizing, and a cause was being investigated. After countless tests, it was determined Andrew’s brain had bled in multiple areas. We were told to take him home, and we would look back on that time and laugh about it.
Andrew’s seizures were initially controlled, but his development was not typical. His demeanor was not typical. He was irritable, and at times inconsolable with no thoughts as to why. Doctor visits, therapy appointments, support groups became our norm. We were just settling in to this new norm, when on Andrew’s first birthday his behavior and body movements became noticeably different. A hospital stay would reveal a new diagnosis. That of Infantile Spasms. I will never forget being brought into one of those tiny hospital conference room closets and being told that Andrew would likely be, “severely, and profoundly retarded.”
The changing seizures, and medication side effect management became our norm throughout the next few years. I thought these years would be full of firsts, and excitement as I watched Andrew experience the world, but no. Andrew’s toddler years were full of all kinds of devastating seizures and trials of medications, and treatments in hopes to stop them. The diagnosis of LGS came after several years, and only after I asked Andrew’s neurologist, “are Andrew’s seizures now considered LGS?”
Andrew is 24 now. He still experiences seizures every single day. He requires total assistance for all of his needs. His care is an immense challenge for my husband and I. I try not to dwell on that though. I can’t. I purposefully chose to focus on the good that Andrew brings.
It makes my day when Andrew wakes up with a smile, and with eyes that connect with me when they don’t always do.
I have met and maintained true friendships with people who would do anything for me, and I owe this all to Andrew.
I have seen genuine pure joy that may not appear so significant to some, but these moments bring me true bliss. Watching a group of Andrew and his friends gather for a simple meal and dance may not seem like much, but I know it is to them. These moments aren’t always clear to most, but I’m proud to say they are to me.
I have also learned that my input is the greatest of all when it comes to Andrew’s care, and I will not back down. I am the expert when it comes to his care. I didn’t realize that back when Andrew was young. Once I truly believed to trust my judgement a huge weight was lifted.
I have learned to alter my perspectives, the little things are the big things in life. Andrew can not fly on an airplane, to travel we must take our van. Our trips in our van with our family through the years are our happiest of times together as a family.
I am a forever changed person than I was long ago, and I owe that all to Andrew, horrible seizures and all.
– Written and submitted by Andrew’s Mom, Rachel