One early November morning I was fast asleep when an unfamiliar sound on Katie’s monitor woke me. It was a rhythmic squeaking sound…strange. I slowly walked to her room. What I saw was gut wrenching. Her tiny, 2 year old body was convulsing violently in a Grand Mal seizure. I screamed for Andy. What do I do?…What do I do? I picked her up and she was turning blue. Call 911!! I laid her down and blew air into her mouth, nothing, she just kept convulsing with her eyes rolled up. This sight, which would become so familiar to us, was horrifying! All I could think was, she is dying, everything has come to this, it is all about to end. Then her body stopped and she rested. By this time the room was filled with firemen and one said she likely had a seizure and is now in a postictal state. As my heart began to slow down I noticed I was wearing only a t-shirt and underwear…no pants! I was still wearing my big girl panties for all the firemen to see. I slowly walked to my room to get dressed.
At the hospital she slept for hours which was scary, we didn’t know if she would wake up and be her normal self. All of the sudden I realized she could do more than I had thought, because now she was just lying there and I wanted so desperately to see her precious smile. She had more seizures and stayed a few nights in the hospital. She did get back to her normal self and went home with seizure medication. I went home with a whole new perspective.
Perspective is defined as a particular attitude toward something: a point of view. For me it wasn’t a sudden moment, but I slowly started to change my perspective from, “Oh poor pitiful me, why did you have to give her seizures, God” to “Thank you God for sparing her life, for giving us all these wonderful milestones to celebrate”.
“So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:18.
I cannot speak to all tragic situations, because I know people go threw a whole lot more pain than this, but for my journey with Katie I can say it’s all about allowing God to guide my perspective. Facing the possibility of losing her helped me realize how blessed I was. The saying I always call to mind is, “It can always be worse”!
I finally realized God had been there the whole time, He was working so hard to help me put one foot in front of the other that I couldn’t see Him. God had carried me for so long and finally I felt loved again, like an old friend was back in my life. I began to see His gifts in my life. God brought us to a new church, Prince of Peace quickly became our family. There was a precious nursery worker who adored Katie, we could finally go to mass and pay attention. There was no special needs ministry and I struggled with that, then God said, “Why don’t you start one!” so we did. The church was wonderful and allowed me to do whatever I needed. We also started a Special Needs Sunday School program. It was such a blessing.
My heart was finally happy again, nothing had changed for the better, in fact things had gotten worse, we now had seizures, but God was showing me a new way of life.
“A joyful heart is good medicine, but a crushed spirit dries up the bones.” Proverbs 17:22.
I am aware of the fact that sometimes depression can be much too deep, sometimes there can be a chemical imbalance that needs to be addressed especially after childbirth when your hormones are crazy out of whack. So please don’t feel bad if you just can’t get that perspective turned around. I’ll say it again, it is a process and it takes a long time and I did need medication a few times, but it never worked long term for me.
Katie was working so hard everyday. She learned to use a walker with assistance. She could walk straight, but needed help turning and she got tired pretty quickly. But she used her walker in the Mercedes Marathon walk at The Bell Center and we were so proud. She mostly crawled around to get to things she wanted. Katie became a master at activating music and light up toys…she amazes us to this day, give her a toy and she will figure out how to make it work in minutes. She became a frequent flyer as we took trips to Texas Children’s Hospital and Children’s Hospital of Philadelphia, two failed attempts at finding a diagnosis.
Will we ever know? I wanted a diagnosis so badly. I became quiet obsessed, spending way too many hours on the internet. If I could just come across that one piece of the puzzle, we would know. I longed to see other kids similar to Katie, get a glimpse at what her future may hold, hug another mommy who had been through exactly what I had been through. I did find friends in similar situations who were life savers. I cannot express enough that support from other “special” parents or others going through whatever you are going through is crucial!! But getting a diagnosis was not God’s plan.
In starting this blog I’ve had an “ah ha” moment. We still have no diagnosis today. As I watch other parents put all their passion behind raising awareness about their child’s syndrome and raising money for a cure, I think I should be doing that. But that is not God’s plan right now! If we had a diagnosis I would be so busy with that and not have time for this blog. This is where God wants my passion right now.
The other aspect of a diagnosis was in having more children. Without a diagnosis we just weren’t sure what to do. I had not yet mastered listening to what God wanted, I just kept questioning. If we had another child would it have special needs? Would this baby have more severe issues? Would that be negligent of me? What does the future hold? Finally we stopped asking and started trusting. I’ll write about that in my next post.