Longing for Heaven & Ranting

well, it's my blog and i can complain if i want to... just don't even try to read this if you don't particularly enjoy ranting and complaining and downright pessimism. ok? i'm just venting.....

"There's great camaraderie in suffering"

That is what i just read on one of the older posts on Angie Smith's blog, entitled Jesus Bring the Rain. It's a blog about a mommy who found out when she was six months pregnant that her baby girl had several medical conditions that made it impossible for her to live. She carried her to term, nevertheless, and had a few sweet hours with her, before The Lord took her home. I just discovered her blog, and have already spent waaaaaay too many late night hours reading it like an addict. It has blessed me and blessed me... The whole story can be found here: http://audreycaroline.blogspot.com/.

I've been having a particularly difficult time lately coping with life as a mommy to a child with spina bifida. i'm not really sure why. i have strong times and not-so-strong times, but mostly not-so-strong times.... and this is one of those seasons...

This last Tuesday, I took James to KinderMusik. It was the last one for the summer, and the last one he will probably ever do, since he's starting preschool in just a few weeks... I can't even express how much of a blessing KinderMusik has been, and how much he loves loves loves it... you know, when your child has a bazillion appointments and things that are not-so-fun - like doctor visit after doctor visit, and therapy appointments, and clinic visits, and the whole sha-bang... it's nice to just have something fun to go to, where there are no goals, no agenda, no "findings" or "outcomes," nothing painful, no work involved, no repeating, "almost done, almost done, almost done..." no holding your hysterical child down in the nurse's lap, while he fights and screams and looks at you with terror in his eyes, like "why are you doing this to me, mommy?"

Yes, KinderMusik is usually our one positive experience among many unpleasant ones... and this day was supposed to be special - the last one, grandma was coming to watch, we would have a great time and say goodbye to the beloved "Miss Erin" before heading off to playcare so mommy could have a little rest...

but about 10 minutes into it, James having the time of his life, his arms give out as he's crawling and dancing, and he bonks his chin on the floor for the 50th time this year - and i'm not exaggerating.. and it splits open AGAIN, blood gushing, KinderMusic comes to a halt, miss erin runs to find a bandaid, james is hysterical, shaking his head around, "i don't need a bandaid" he pleads....

and i feel like throwing up. i'm so upset. we had already had a barf morning (typical), and i was TIRED. just soooo tired!

so off to playcare we go, earlier than anticipated, with bandaid applied, dispite the intense fight, and after mommy calms down enough to drive........

grandma had to help the nurse change it out to a non-latex one once we got to playcare, while i sat in the car because i was too upset.

it all sounds so dumb. some of you might say that this is typical "kid stuff" - that it could happen to any kid, to any parent, to any grandma...

but i beg to differ, because the difference is that we are just surviving... our tanks are not full to cope with everyday challenges like this.

i didn't want james to go to playcare early that day, but i also could NOT be his mother one second longer.... why couldn't we just have a joyful time enjoying the last KinderMusic? not joy mixed with sorrow.... JUST joy!

it seems like everything in our lives is joy mixed with sorrow. that's the best way i know how to explain how spina bifida haunts our lives.

a couple of weeks ago, our family was invited to lake almanor with some friends for the weekend. seth already had plans to go backpacking, so i knew that if i went, i would be without him to take care of both boys for the weekend. i so long to be normal that i said yes, the boys and i would go, thinking all along how impossible it seemed....

i decided at the last minute not to go, which ended up working out because ashley, lucy and bear came to visit us at my house and we had a REALLY great time.

at one point my mom offered to watch james for me for the weekend so i could go to almanor with josiah and be normal...

...but i don't want to be normal without james. i want to be normal WITH him....

but it will never be that way.

a few people said to me that no mommy of a 3 year old and a 6 week old would dare travel to a cabin by a lake without her husband.. so i shouldn't feel like it is james' spina bifida that is limiting us... it would be that way for any mommy of 2 children that small....

i get what they're saying, but for me that's simply NOT TRUE.

everything i can possibly think of that would be challenging and impossible and horrible on that trip to almanor relates to either barf or james not being able to walk. NOTHING is unrelated to those things.... so, yes, i WOULD have gone if it weren't for the SB - and it would have been easy, enjoyable, relaxing, did i mention EASY? because it would be normal....

normal is easy and i don't want to hear anyone else trying to tell me otherwise....

but i guess if i had had normal from the beginning, i might think the same thing, so i'm not judging...

one of the other things that really stuck with me that i read on the Jesus Bring the Rain blog was the idea that when things like this happen in our lives (the death of a child, or your child having a disability like spina bifida) it is "like an amputation - you continue but you are never the same."

yeah

that pretty much describes it...

if you've had a similar experience, you totally get that...

which brings me back to my original quote, that there is great camaraderie in suffering.

so after dropping james off at playcare, my mom and i headed to belaccinos for coffee.

lance is at camp this week and next week. every summer he goes for 12 days. it's really my mom's one and only good break from prader willi life during the year. the camp had already called once telling mom that she forgot to pack his needles for his injections he has to do each night... they have since called again saying his toe was infected and they had to take him to the doctor to remove half his toenail...... SIGH...

anyway, we talked for 3 hours that day...

about how our lives are different. how people don't understand unless they have suffered, too.

and then, right there at belaccino's, a divine appointment.... we ran into a lady from our church who we haven't seen in a long while... i'll call her Mandy. that's not her name, but i don't know how much she would want to share here, so i'll just call her mandy...

so mandy comes over to our table and starts telling us how her daughter is sick and has had to have several surgeries lately, and mandy is a teacher and has used up all her sick leave to go down to southern california to help her, but she is worried because she has another surgery coming up, and mandy's sick leave is all gone now, and who will be there to help her daughter? we asked her how old her daughter was. she said 32. she said that she works with a bunch of people who just don't get it. they are judging her for taking all her sick leave. they say that a 32 year old woman should be able to take care of herself, that she should be able to find her own help... but mandy says that you don't stop being mommy just because your kids turn 18.

sigh...

this was exaclty what we had just been talking about for 3 hours.

and then in the days following, i just felt so hopeless... like if i'm already feeling like i'm at the end of myself at my age, what will i be like when my child is 25 (like lance) or 32 (like mandy's daughter) ??? the heartache never goes away....

i'm taking james to the bay area in a couple of weeks so his GI doctors can run some further tests on him to find out why he barfs every day of his life and what we might be able to do about it... i have a bad attitude already.. nothing has ever worked in the past, so why should i believe that this will work?

and that brings me to yet another quote from Jesus Bring the Rain...

She read this in her devotional:

"When our gratitude for the past is only partial, our hope for the future can likewise never be full. But our submitting to God's pruning work will not ultimately leave us sad, but hopeful for what can happen in us and through us. Harvesttime will bring its own blessings..."

and then she commented...

"Harvesttime.

That's what I am waiting on, I guess. The day when all the growth comes and all the sorrow passes. Most likely, it will not happen fully in this life; a reality which I am daily coming to terms with."

yeah, i really like this lady. she gets me.

warning! if you go to her page you WILL cry, and you might be up way too late being addicted to her story... it is GOOD. and she's a great writer........

well, speaking of too late, it is right now an ungodly hour, so i'll say bye for now....

and don't start worrying about me, because this is my life... nothing out of the ordinary... and I know without a doubt that His grace is sufficient for me. I am learning more and more everyday exactly what that means....