A Special Kind of Love . . .

I don't know if I mentioned it before but one of the things that struck me in (all politics aside) Sarah Palin's acceptance speech was when she said that children with special needs inspire a "special kind of love". I really do believe it.

Along with that special kind of love comes a special bond with other parents who have walked the same road. I would have to imagine it is sort of like two soldiers who have both seen combat meeting for the first time. They don't necessarily know each other but they understand each other on a level that no one who hasn't seen combat could ever possibly . . . .

Anytime I post about a dark day or difficult news, the response has been almost immediate and always powerful. There is an army of SB parents out there who possess . . . well, I was going to say "special kind of love" . . . but I don't think "special" quite does it . . . . I think "fierce" is more accurate . . . a fierce kind of love . . . not just in the way they love their extraordinary children but in the way they deal with the world as a whole . . . it is a sort of "dammit it all don't tell me what I can and can't do" sort of love . . .

Well, all that is to say, I thought I would share a couple of e-mails from fellow soldiers who wrote in response to my last Club Feet Update . . . . thank you so much for your prayers and support . . . out of respect for privacy, I will always sort of "anonomize" e-mails that I share . . but I hope you will agree that the e-mails I choose to share really are worth it . . .

This first one is actually in the comments section of the latest Club Feet Update (in case you missed it):

Hold that thought..... not all children wear splints all their life. Oh my gosh, I'm so glad [my daughter] doesn't! Her feet and legs were just aweful when she was small! Splints work to help keep feet straight, and to give support. You don't have to wear them all the time. As a matter of fact I can see AnnieLou playing in that summer pool, feet dangling, and no splints in sight! She might use them for support, but it will be up to you and her how much she needs and for how long. You'll travel down that road bit by bit. No need to think of splints for college, at least not until she gets out of her kindergarten splints! She is going to grow and change. Annabelle is not other children with SB, as you know. She is definitely on her own road. Take a deep breath and just think about the heel cord lengthening. You're not alone. Here's a hug! Keeping all of you in my prayers.

And here is an e-mail I received this morning (along with my response following):

Dearest Matt,

My heart aches for you. Its the smallest things, like casts, that will bring you to your knees. And what your feeling is painfully normal. You're so transparent when you write...I encourage you to continue that, it makes you stronger.

And yet, I know there are things that you feel, that you and Holly don't tell anyone. The dark nights have no words for description, then you go to the "at least" part of your brain... "at least she's here, doing relatively well, ... at least, at least..." Its a process, a journey.

But still, you'll have those moments of expectations that are dashed, hopeful anticipations and something out of the blue said by a therapist, the urologist, the neurosurgeon, whoever....takes those hopeful things away.

You can do this. I know sometimes you don't feel very strong but you are. The best advice anybody ever gave me when [my son] was born was to try to take it one day at a time. When my brain would go warp speed to him in middle school with kids picking on him, I would remember to stay in the day, trying not to project into his future.

Matt, there are no words to describe how much [my son] has changed my life. Yes, he has spina bifida, a shunt, the "list" but just like Annie, he's amazing. God has blessed these children with a unique, deep spirit of resiliency. You already see it in her. The way she looks at you and Holly. The piercing eyes she has, the soul connection you and she have as a father and daughter. Deep down you know this about you and her. It only gets stronger the older she becomes. I promise. And its joy indescribable.

So yes, be angry, process the grief, but it does get better. I hate how contrite that sounds, and I, honestly, didn't really believe it when parents with older kids would tell me that...but its true. Trust your faith, God keeps His hands on our children.

No need to reply, Just wanted to say I understand. Write if you want to talk, scream, bitch or celebrate. God is good...God soothes our pain.

... Mom of a miracle kid.

My response:

Thank you so much - I really apprecate that. And you are right - when I focus on the here and now, there is so much beauty and joy. It is the fear of the future unknowns that sort of get to you.

We have so many good friends with typical children but of course they couldn't possibly fully understand our thoughts and feelings.

It's one of those delicate balances, we want to be honest about what we are feeling without "feeding the best" so-to-speak and spiraling into some sort of self-absorbed abyss.

Sometimes you feel like you shouldn't hurt so much after a certain amount of time and yet you do . . .

I keep coming back to "My daughter". Of course I still hurt and ache from time to time - she's "my daughter" and it's part of parenthood for everyone - typical or extrordinary.

Then again, she's "my daughter" and she is dependant on me to show her how to face adversity, chin up and all that as well . . .

Holly and I so appreciate our "SB moms" who are further down the road and able to share some perspective with us.

When I decided to write about this whole process, I did it in part so that friends and family could stay up-to-date. But I also thought that maybe someone coming along the road behind us might take encouragement that they are not the first or only people to feel the way they do . . .

Who knows, maybe someone will read this weeks, months or years from now and realize that it is okay to stop for a moment and acknowledge "Wow, this still really hurts" and then keep on keepin' on . .

Thank you for your encouraging words. They mean more than you know.

Blessings,

m

Thank you once again to friends near and far, new and old, for all your support and encouragement. I really makes a difference . . .