Anniversaries v. Milestones

I suppose it is that time of year again. When I begin remember where I was and what Jenelle was doing last year, two years ago… three years ago. Two years ago today, we were in the hospital while Jenelle was in “status” - hoping she would make it home in time for her first birthday. Oh yes, Birthdays… those are really tough too. You realize your child is getting older, and yet it becomes so blatantly apparent that your child is so very far behind.
Please click here to read more
I’m not sure which is easier these days; anniversaries or milestones. The last milestone Jenelle actually met was laughing out loud. Most children do this at what… age 6 months? Jenelle was 2 and a half. Thank God for that though because I was about to lose my mind wondering if this child felt any emotions at all. It was probably the biggest highlight of the year (still holding out to see if she’ll start sitting up on her own before the end of the year.) The list of anniversaries for Jenelle gets bigger each year; her first MRI, her first EEG, the day of that phone call from the doctor that changed our lives forever and of course birthdays. I’ve learned to appreciate each anniversary as a reminder of where we’ve been, and of all the potential for where we can still go.

On one of my on-line support groups today, a Mother was remembering a horrible experience a year ago when her child seized uncontrollably for almost 2 hours. They were at an airport and had to be taken by ambulance to the nearest hospital… none of the usual methods to stop her seizures were working, and she feared her child was dying. Because we’ve known each other online for over two years, I too remember that scary day and how I cried and prayed for her daughter. I remember fearing that child would regress from the pro-longed seizures, but as it turns out she has accomplished more in this past year than most expected. Hindsight is a blessing, especially when you can appreciate your fear a year later, and know that the child is fine and doing better.

I supposed I prefer the milestones to the anniversaries. After all we’ve been through with Jenelle; we certainly do have more appreciation for those small milestones that she passes all too infrequently. Once Jenelle finally masters something she should have been doing at age 6 months, it feels like progress, and as if she may exceed our expectations now. Anniversaries are bitter sweet, and like milestones they come in and out of our lives unexpectedly and with great significance. I don’t acknowledge each anniversary out loud, but they are in my mind as the calendar dates fly by each day. A “big one” is coming in just a few days… Jenelle will be three on Saturday. Instead of tears of grief for the three year old child she is not, I have a tremendous amount of pride for the accomplishments she has achieved this year. It gives me hope for the coming days and for her potential in the future.

Meet my Jenelle

My name is Kelly, and I am a married mother of two who also works full time as a litigation paralegal in a large law firm. I found my way here because our youngest daughter Jenelle has special needs. That sentence seems so simple and yet there is no easy or simple way to describe my child. She has literally stumped most of the world’s leading experts in child neurology yet technically all of the things we’ve tested her for have come back “normal”.

please read more about Jenelle's Journey
Jenelle’s biggest challenge is controlling her seizures. On top of that, Jenelle has very low muscle tone (hypotonia), cortical visual impairment (she’s blind), metabolic acidosis of an unknown cause and she has a G-tube for failure to thrive issues that did not surface until recently. Developmentally, she cannot sit up, does not use her hands to hold anything and does not talk –yet she makes babbling sounds and started gracing us with giggles this last May. She will be 3 later this month.

Jenelle was born at 37 weeks via planned c-section after a difficult pregnancy. She was 6 pounds 14 ounces with Apgars of 8 and 9. Pre-term labor started for me at 28 weeks and was primarily caused by a kidney infection that I had at that time. I was put on Terbutaline, and placed on full bed rest the last two weeks of my pregnancy. At birth, we had no reason to believe that anything was wrong. My gut started to tell me something was wrong around 6 weeks when I noticed she wouldn’t smile, and that she didn’t grab at toys. She could barely lift her head, or support her own weight at 12 weeks. By six months of age, we knew she was delayed, but hoped it was due to her pre-maturity.

She was diagnosed with Infantile Spasm (seizures) at 10 months of age, and that is when things really began. Many medications, hospitalizations, steroid injections, status seizures, immune system compromise, therapy and endless doctor’s visits and specialists soon followed. About 9 months after the Infantile Spasms diagnosis, Jenelle was diagnosed with Lennox Gastaut Syndrome, a severe and rare form of Epilepsy that leaves most of its victims with severe mental retardation, if they live past age five. Though that last part is scary to hear, I’ve since met many, many families with LGS who have children in their 20s, 30s and even 40s. Jenelle finally gained seizure control sometime in late July 2005. We aren’t sure what is working exactly but we’ll take it.

I remember the first time I read “Welcome to Holland.” I cried for hours and understood the beauty in its message. It helped me to come to terms and realize that I needed to be positive and strong about things for Jenelle and my family. I also remember one stressful day when a well-meaning friend left a copy of “Welcome to Holland” in Jenelle’s cubby at school. It was the first time I really “hated” reading it, though for the life of me I can’t remember exactly why. I remember that I wanted to scream, “Holland sucks and I want a refund! I want to be in Italy drinking wine and buying leather shoes like I planned! Where can I file a complaint against this fricken airline, and how can I get my money back!” I know each and every one of you has felt this way too.

So, thank you for including me on this blog. I’ve been writing updates about my daughter since her seizure diagnosis over two years ago. It is very therapeutic for me to put things in writing, and I hope that by sharing those thoughts with all of you I can help you see that you are not alone. They say the first year with a special needs child is the hardest, and I wholeheartedly agree. I’m not sure if things really get better or seem better, or if we just have to take a year to learn the ropes and understand. Today I feel as if having my daughter makes me a better human being. I hope you feel the same. Thanks for reading about us and best wishes to all of my fellow citizens in this land called “Holland.”

Sniffles

Certainly there are things that are far worse, but life with a child who is slightly immunodepressed can be exhausting.

Sleep - for all in the house - is hard when a child has near constant colds, sinus infections, or bouts of diarrhea.

And there's the constant concern: will she get sick from this? And if she does, will we end up in the hospital? All the worry is exhausting. It's so hard listening to your child struggling to breathe around so much mucus, and knowing that this might last for weeks - or months. Poor, poor baby.

Humorously, between when I wrote this and when I posted it, Ellie seems to have (so far!) missed the flu going around her school while I caught it. I am not enjoying the flu, but at least I can handle a couple of days of it without my electrolytes getting so out of whack that I end up in the hospital on an IV. I'd take these illnesses for her any day, everyday.