The long road

As usual, it's been an interesting few weeks around here. Our emotions range from thrilled to sad, laughter to tears....and that could all happen in one day or in a matter of hours.

That's not all that strange for a family with an almost 4 year old and one just over a year, but I have to admit that things really do feel like they are only getting harder and not any easier.

Logan's seizures are still not any better. The last few months seem to be some of the worst we have had since this all began last July and in the same breath I can tell you that it feels like nothing has really changed since last July. Shouldn't something have changed other than the date on the calendar?

It is just over month from the one year mark since we received Logan's devastating diagnosis and as I type this he is having another seizure.  His typical one for the evening, although it is about the only thing that is typical...at least these days.  Most of his seizures are always unpredictable and the only trigger we think we have found is if he gets too hot. He usually has one or two in the morning, but he could have a day with 3 seizures all day or a day where he rounds it out with 12. And we just weaned him off one med and up on another one, so as of tomorrow morning he'll only be on two. Story of his little life.

I have to tell you, I try not to hate anything in my life. We don't even use the word around our house.  It's not a nice word and God teaches us to love. Seizures however, are pushing me to my limit. It is hard not to flat out, out loud, with everything in your heart and soul hate something that robs your child of his life.

The other part of that frustration is wondering what you are doing or not doing that is hurting or would help your child that you haven't found or thought of or haven't asked or demanded from the doctor or doctors that you currently see or should be seeing and what if you've missed the boat and should have been or not been doing something all along?  It can literally drive you mad in itself and then throw in a little dose of every day life with another child and family.

I've been reading over other blogs and all of our stories are so similar. The world of a special needs child and their families. It is the most touching, heartbreaking, empowering and gut wrenching world that you never thought you could handle...until you see the eyes of every one of these children.

I am determined to coin a phrase other than "special needs" for these fighters. Every child is special and they all have needs.  The children who have to endure what many of these children endure in every aspect of every moment of their lives is something altogether different. They truly are a gift from God.  Only He can create something so precious and so tough, so loving and so resilient in such amazing little packages. No, He is not the one who did this to our children, but He is the one who makes them so special.

I would not wish this pain and suffering on anyone in this world, but I also would not trade what I see in my child's eyes for anything in this world. It can make you smile from the deepest parts of your soul and it can bring the most amazing tears of joy.

I love both of my children more than life itself, but there is truly a difference in the way we all communicate. Freddie's vocabulary is growing every day and we continue to be astounded by him.  His brother, on the other hand, isn't even able to smile anymore but we continue to be astounded with all that he has to say as well.  With Logan it just all happens to occur with his eyes.

Sometimes they are bright, happy, smiling and excited! Unfortunately those times are far too rare. Too often they seem to be crying out for us to help him, to free him from being trapped by his body and electrically charged brain. We try to assure him that we are there and doing everything we can to help him.  But are we?  Sometimes it seems like we just aren't doing enough and yet don't really know where to turn.

I remember telling everyone in the beginning that I was sure this was only going to get harder.  Call it mother's instinct, but it is something that is slowly becoming a difficult reality.  A friend of mine told me that her daughter, who is one of the tough ones I mentioned above (she is definitely special too!) needed her own secretary. It is so true!  These children with medical and developmental challenges collect files that could fill a small office, have schedules that would baffle the most talented executive assistants and the amount of information stored in my brain alone that I could rattle off at any moment to any medical professional who asks, still surprises me.

I had no idea when I started this blog how true the "family journey" part would be. As with any fight worth fighting, it's a long, hard road. There are definite rewards along the way, but sometimes the length of time between those tiny triumphs begins to take a toll.

I hope this post doesn't diminish the amazing blessings that we feel each and every day, but for tonight I simply needed an outlet, a way to vent and somehow manage the frustration that has been building. Things will get better I know. God is leading the way and that alone makes all the difference.

I hope to write a much happier post in the next few days about all of the amazing blessings we have had lately complete with pictures. Hopefully I will find that happier frame of mind very soon.

Thank you all for your love and kindness. You continue to remind us that we are not alone.

Two of my sweet boys are sleeping and for them I pray for sweet dreams.  For Logan I pray for eventual, peaceful sleep.  For now, I'm going to crawl into bed beside him to try and ease whatever pain is causing him to whimper.  Sometimes it's just knowing he's not alone.

"Jesus replied, You do not realize now what I am doing, but later you will understand." (John 13:7)