Sweet 16 - Sweet, but hard

Edited to add: I thought it fitting to use this for my Wordfull Wednesday post (more entries at Chocolate on my Cranium) because even though it's hard, it's also amazing to be Ty's mother.

Tyler's 16th birthday came and went last week without the usual accompanying 'Sweet 16' celebration. In fact, I hate admitting this, I didn't even wish him a Happy Birthday on his birthday. (I know! What is wrong with me?) Ever since I filled in the dates on the fridge calendar last month I have been thinking about it, so it's not that it hasn't been on my mind - it has. Oh, how it has.

I remember when we first started taking him to Early Intervention-speech, physical and occupational therapies-he was 6 months old. A case worker brought a video for us to watch entitled, Mourning the Loss of your Dream. She expected us to break down and sob, let it all out so we could "move on."

It's strange, but at that time we felt no real sense of loss for the life he might have had if he'd never had his shots at 2 months resulting in a life-altering brain injury. Instead, we had a strong feeling that he would lead us on a journey of much growth and love. And oh, how he has.

However, that sense of loss has snuck in like a stranger in the night a few times since then:

when the neighbor's baby started walking
and talking

when the kids in his class started being invited to birthday parties
and reading, writing and learning arithmetic

when the kids in his scout troop (the one he would've been in) started getting their Eagles
and, now, when they are driving, dating, and discovering their talents

I think about how it might have been - the friendships he'd have made, the girls he'd be crushing on (or who'd be crushing on him), the kind of big brother he'd be (definitely sweet), the miles of running and walking he'd have done by now, the sports he'd have loved to play, the food he'd be devouring during his teenage growth spurts, and yes, even the musical instruments he might have taken up.

On milestone birthdays, these thoughts and dreams raise their heads and give me pause. I am sad for him and also, selfishly, sad for me. Sad that the only conversations we have are the ones in my mind or with our eyes, sad that he cannot (right now) have the dreams in my heart for him or become independent and have these same dreams for his own future children.

I let myself mourn what might have been and then, carefully, I tuck those dreams back into their treasure box to store up against some far distant future where God will breathe Life into them. Then I come back to how it is, rejoicing today in the many lessons he's taught me, all the many ways in which he has stretched the corners of my soul - filling them up with love and gratitude for a life so precious.

He is my Sweet 16. Happy Birthday son!

Man about town

The two year old had been begging me to take her somewhere all day. I mean ALL DAY. And I kept giving her reasons why we couldn't go anywhere - Dad wasn't home, the girls weren't home and we couldn't just leave Ty.

Then it hit me - I bet he was bored as hell dying to get out and go somewhere too. I had my little girl help me get him ready, she even knew to bring me the hair gel so I could touch up his spikey flat top.

I got him in the wheelchair and just like that - we were off. I decided to surprise her by walking to the park. It's her absolute favorite place. On our way, we ran into neighbors - scads of them. And it was nice.

Ty wasn't too happy, his hip is dislocated and sometimes it causes him a lot of pain, but he managed so much better than I thought he would. We all had a lovely evening: the two year old on the slides, the girls on the swings, Ty holding my hand, and me watching them all from the park bench and chatting it up with neighbors. Imagine that!

The pros and cons of Independence

Pro: You are able to get through a lot of difficult situations through sheer determination

Con: It can be exhausting; determination is, naturally, a resource-suck

Pro: You are forward thinking and prepare for physical needs (meals, cleaning, child care)

Con: It can be lonely; people assume that you don't need anything, and forget that emotional needs are just as important (moral support, friendship, including your children in activities)

Pro: You are resourceful and can find things to do with your time

Con: It can isolate you and fool you into thinking you don't need people anyway

Pro: You are constantly drawing on internal resolve to get things done

Con: It can make you think you're "all that" - who needs God (or people) anyway?

Pro: You can kick your own butt when you're wrong

Con: It can be rather painful - to kick your own butt when you're wrong

At least it's some form of exercise

Ponderables...

I'm sure I'll delete this later, I'm just getting it off my mind and out of my fingers.

It is true that I have known far too many children who have died - three since December, making six in the last three years. All these children have been born with health challenges. Their parents have loved, have struggled, have stood by, and ultimately, have had to let go.

I am amazed at the fortitude they've shown when dealing with the death of a child. I wonder where it comes from, that strength.

It must be that the Spirit of God whispers peace to their souls. Or maybe, a quiet acceptance of what cannot be changed sets in and they do the best they can with one of the hardest trials in life.

Saying goodbye.

These last three have reminded me of the very real possibility that not all of my children may outlive me, but I happen to be a tenacious parent. The kind who researches, reads, and absorbs as much as I can about the law (as it pertains to education), science (as it pertains to medical conditions), advocacy (as it relates to disabilities), and health and educational philosophies. So, how do I know that my determination to help my son is not an attempt at hanging on by my fingernails to keep him with me?

I'm not sure I said that very well. I just wonder if my protective desires as a mom are running contrary to the will of the Lord. Of course, you say - and I know, this is where prayer comes in. I need to have a close relationship with God in order to hear Him speak to my heart. I somehow think that I am insulating my heart - you know, my version of putting my fingers in my ears and singing, "La, la,la - I can't hear you!"

It is painful to think of separating from Tyler, even for a time. I think of the two of us as parts of a whole - it's almost as if we have a symbiotic relationship. It is difficult to explain, but it is sometimes how I know to take him to the doctor. I have poured so much of my heart into him, into helping him become that I'm sure I would be lost without him. So, while it is a strange thing, I can't help but wonder if he feels that and is hanging on just for me, for our family. It may be that he will live for several more years and actually outlive me, but at the back of my mind is the nagging thought - "Am I holding him back?"

There is no way for me to turn that "momness" down a notch, it just feels wrong. If I don't keep searching, keep trying to find a cure or information for this latest health enigma then I feel like I am giving up. And giving up on Ty is not something I think I can live with.

Is this why my hair is turning gray at an alarming rate, the pounds are creeping on, and my skin (grr, my skin!) is hating me?