Sometimes it's hard. Sometimes it's lonely.

So here's the deal. I have this boy who is such a miracle. He was born at 25 weeks. As most of you know - a normal pregnancy is 40 weeks long. For real - that is 15 whole weeks premature.

So we've established this many times on the blog. He is one of the biggest miracles I have had the privilege of experiencing and being a part of.

But right now... my miracle boy is hard. He's 7 and he's attitude and he's smart yet so very different from other boys his age and I am at a loss when it comes to so much that pertains to him right now. And some times he thinks the world revolves around him... and since it pretty much did for a while I can't really blame him too much.

My love for him is big. It's really big. And you already know that. My frustration and puzzlement over what is best for him and how to deal with situations and circumstances that I never mentally practiced for is also big right now.

I always try to include him in things the other boys do. And lately it's just been hard. He asks to do things that they want to do - fishing, playing at the playground, playing ball outside, etc. And then once he's out there doing those things he complains. He wants to go in. He sees it - the fact that he can't run. He can't catch the ball quickly and effortlessly like the other boys. Oh - it hurts my heart. He is so much a part of me and I feel it. I have always tried to celebrate what he CAN do. Focus on the positive. Never say the words to him "you can't".

Let me just say - right now I am weary. And as he gets bigger there are honestly things he just can't do. So I see a moment of disappointment flash through those hazel eyes and then I see him just go into this internal world where there are little Einsteins and Veggie Tales... and happy places that he sees clearly in his mind even as his eyes struggle to function.

I think in that world he runs really fast. I think he uses the bathroom just like his 3 year old and 5 year old brothers do and I think the right and left sides of his body are both functioning fully there.

Tears fall from this mama's eyes as she writes, because these were scenarios I never imagined grappling with when I dreamt of motherhood. I want so much what is best for him. And how hard it is for me to suddenly say "I don't know what that is. I don't know what that looks like right now".

And do I dare open this up? The side of me that is saying "it's hard!" - Rather than the side that says "it's beautiful and miraculous!"

I want him to learn responsibility. I am giving his brothers jobs to do and they are thriving. But you guys, he can't dress himself, he can only see arms length and what he can see is not clear at all {this is our present understanding of his vision any way. He is actually labeled "legally blind"}, his right side is so weak - and we can do things to help strengthen it some, but it will always be very difficult for him to use the right side of his body. What happened to him when he was 3 days old has many different scientific and medical terms - but it was basically a stroke.

It used to be no big deal for me to hoist him onto a slide or carry him over an area that was too hard to maneuver a walker over. He's alot bigger now. I'm not exactly a strong mama. Honestly, I am only double his body weight + about 12 pounds {- Always been a bit of a weakling}. And I hate that I can't help him as much as I used to. I can't even tell you how badly I feel about it. My chiropractor would tell you though that I have got to make smart choices regarding what I do with him. He has rolled his eyes at me a time or two when I have answered his questions about how my body got so out of alignment.

Too often K just gets to do what he wants. Watch his movies, play his computer games (with his left hand), and not be a part of what everyone else is expected to do. I don't want that - and yet when I try to include him my plans rarely work at all.

I am asking God for wisdom, creativity in doing this, and just so much grace.

Lately I have noticed this little feeling creeping in to my heart. Loneliness, and a little bit of isolation. I am not going to let these feelings be my master. But I have to be honest and say that I am struggling with them right now. The play dates, all of the summer activities... with two who aren't walking (K walks, but still with his walker and needing assistance in many places) and all of the things that K struggles to do on his own it isn't very practical for me. The times that I have gone out and tried to do things with all of the boys have often become very stressful. I don't want to go out and do something if I am not going to be able to safely and confidently handle the entire scope of it.

Oh and in my heart... deep down in that place of knowing: I know that I am doing exactly what I am called to do. Exactly. I don't know the details of each day in and day out parenting decision as I trudge the waters of having a child with special needs (I always hesitate to use that phrase - because I see each one of my children as having "special needs" - but I use it with K because it is universally understood). But I know that God picked me. And I know that he gave me the grace to do it. And I know that God picked K. And I know that God gave K the grace to be patient with a mama who is learning, and struggling, and sometimes is weary

*Persevere, persevere, persevere*

And as I persevere I drive to the speech therapy play group where an occupational and speech therapist works with him and a few other kids with similar issues as him.

I schedule surgery number 9. Nine surgeries for a 7 year old makes me feel sad - but boy do I know there are many worse off by far! This is simply a surgery to stitch his digestive tract and stomach where his feeding tube site never closed on it's own as it was supposed to.

I bring him to occupational and physical therapy as we continue on in this deep desire to strengthen all that we can on this boy whom we love so deeply.

And I pray. Doing alot of that over him lately.