Monday, March 7, 2011

how i make it make sense...

i've met a lot of amazing people in the last year and a half. some i've met in person, others just virtually. but no matter if we've had actual face time or not, i've learned so much from them. i often read excerpts from various blogs and feel like what was written could very well have come straight from my mouth. other times, i have a different point of view. either way, it's been an incredible experience to learn from others and grow along with them by learning about how they see the world.

when leah was first diagnosed, i wasn't sure how to make sense of it all. she was in such pain. it was nearly unbearable to watch. as time has passed, we've had our bumps, but it's almost like she's settling into her body and figuring out how to make things work. so am i. we've got a looooooong way to go, but we're working on it. 

and yet, i'm still trying to make sense of it all. i wonder all the time what it would be like if she could just use her hands. it would be fine if she couldn't talk, she could communicate by signing or she could eat by herself, or play with the toys she wants to play with, etc, etc. i wonder why she has to suffer. and then she cruises by me with the silliest smile on her face and i realize that yes, she suffers, but she's still happy. we both suffer from rett syndrome. and yet we suffer from it very differently. i'm not sure why this was our lot in life, but it is. 

i read a blog post yesterday from a wonderful mom in europe who has a daughter just younger than leah. in the world of rett syndrome, this sweet little girl suffers a lot more than leah. she cannot walk and has lots of other issues that leah has yet to struggle with. this mom is a writer who i resonate with all. the. time. she writes things and i think, "wow. exactly!" this particular post was about a "reason" for rett syndrome and her final thoughts were that there was no reason for it, thank goodness. it was caused by a chance mutation of a gene at conception and rett syndrome was the result. and this "reason", for this mother, worked.

she said she didn't feel it was part of any grand plan and didn't see how a higher power could have 'let it happen'. i actually loved when she said, and i quote, "how bizarre that would be - letting our children suffer so their parents become more saintly."

i immediately agreed...and disagreed. it was so strange. my feelings were pulling me in opposite directions and i couldn't find an answer to make it make sense in my brain. i thought about it all night and all morning and i still don't have a solid answer, but i've simply settled on faith. 

i agree that heavenly father - or whatever higher power you might believe in - does NOT let children suffer simply to make their parents more saintly. i disagree, however, that it is not part of a grander plan. i know it is. 

i believe {and this could very well be a unique view} that we lived before we came to earth and we will live again once we've passed on. i also believe we knew a little bit about what our lives might be like while on earth. i don't know how much we knew or agreed to, but i believe it was enough to make an informed decision. i also believe that we all have agency, so no matter our struggles, we can choose how to respond to them.

some struggle with issues they were born with. some struggle with issues stemming from their own choices. some struggle because of the poor choices of others. some struggle from addictions. others physically. others mentally. others even socially or spiritually. some suffer for others. sometimes suffering is for absolutely no reason and can definitely be avoided. other times, there is no way of getting around it. and yet, no matter the reason, no matter the why behind the suffering, we can all choose how to act. how to deal. to rise above or be dragged down. i'm sure with every trial, we do a little of both. no one is perfect. and if we knew how to get through, it wouldn't really a trial and we'd probably learn very little, if anything. 

i cannot sit here and tell you that i wouldn't change a thing. some say that if they had it all to do over again, they would choose their trials. their struggles. their joys. i'm not sure i would. it's hard to watch my child struggle for no fault of her own. it's hard to know she will most likely be made fun of or have rough days and she did nothing wrong! it's hard to know we are constantly being left out of things - parties, play dates, trips to amusement parks and more. if someone called me today and said there was a cure for rett syndrome, i would grab leah's hand and the hands of my fellow rett friends and RUN to the cure. but, i would never ever ever give up the things that i have learned. 

on more than one occasion {many, many more}, i have dropped to my knees and forgotten all about myself. i have wanted nothing more than peace and happiness and relief for my daughter. on more than one occasion, my eyes have been opened and i've seen others as our heavenly father sees them. on more than one occasion, others have opened up to me because some of my struggles are so visible. i am not perfect and i'm not saying that leah's struggles have made me more saintly. but, since i can't do anything about them, i have chosen to have them help me to learn. i know leah struggles as well, but i truly believe she's still happy. she still has joy. and to be honest, i think she responds to her struggles in a more grown up way than i do. 

like i said, this is just my point of view and it could very possibly be quite unique. but i believe we struggle with various issues throughout our lives for a reason. and i believe others are put in our paths at specific times for a reason. i believe we are given the tools necessary to get through our trials because it is part of one big plan and there is a point to all of it - even if we don't know exactly what just yet. and i believe we have help along the way. sure, it's still work. and yes, it still stinks. but we can do it. we knew that before we came here. and that makes sense to me. 

how do you make sense of your struggles in life?


ed and kelli said...

i listen to a very wise sister explain how she does it. and it makes me wanna do better at my struggles. you are the best shmave.

t.t.turner said...

Maren, you are such an incredible writer and person. This is so beautiful. You just made my day so much brighter. I love hearing your perspective - it really is pretty "saintly", and proves what an incredible person and mother you are. Love you!

Kristen said...

beautiful and your sense makes perfect sense to me. i love reading your perspective.

Jessica M said...

Beautifully expressed Maren. I enjoyed reading this.

Jen said...

I love how you articulate the beautiful pairing of hardship and learning. For whatever reason, they come together. You cannot get the depth of knowledge without the depth of the trial. As well as love and agony. You deeply agonize as her parent because you deeply love her. There is no ill in loving someone that much. There is truly opposition in all things. :-) You may not be claiming sainthood, but you are a very good example.

Erica said...

im so glad you wrote about this. i so so so respect your opinion on these things. ive been thinking about that blog post for a while too. and about the fact that i really need a notebook to write down my thoughts! i seriously miss you and think we need to get a few dates on the books before july!

Maquel said...

Your blog helps me get through my struggles. You mentioned that other mother's blog that you resonate with--when I read yours I think, "Wow. Exactly!" I think I have a crush on you! :)

I know Stockton and Leah are different, but a lot of your fears are my fears. He starts kindergarten next year and I'm terrified. I worry that he'll be poked fun at because no one will understand why he's different. His own cousins treat him like a baby. But I'm sure it will be a good learning experience for both of us (though, I probably won't think that at the time). And I'm sure I'll be doing a lot of praying.

Catriona said...

I'm really glad you wrote this. After I'd pressed 'publish' on that blog-post, I wondered if I'd just gone too far and turned people off.

There are so many ways of looking at the same situation. I really identify with what you say about agreeing and disagreeing with something all at the same time. I hope no-one thinks that I'm trying to tell them what to think (as if I could!) - I'm just trying to reflect MY reality. And of course that can change, from day to day, moment to moment.

Really looking forward to meeting you in Boston in May.


Elaine said...

It is a unique point of view (that I do know others believe as well) to want to be grateful for our sorrows, trials, hardships. And yet even if we want to appreciate the hard things, it is SO difficult to still do it. It is much easier to see the whole perspective after everything has passed we can look back with different eyes.

So, I am so humbled by you, and appreciate of your wisdom, honesty, and your hopeful spirit that helps you have an amazing attitude even amidst such a difficult and long-lasting trial!

Porters said...

This is so hard...I love that you wrote about this. It is something hard to even acknowledge. I know that I also won't give up the lessons I have and am learning from challenges. But I can still really really really struggle in the moment, day, year, whatever. Sometimes I hate the challenge so bad I think I will burn up inside. But then in a moment of relief (no doubt some undeserved blessing sent down) I get a teeny snapshot of a bigger picture. It doesn't make it 'better' or even 'okay' but I can take a deeper breath and at least keep going. So I think that is good what you said... about 'how' you have to still choose and make decisions. And sometimes just taking one more step forward is all I can do in a day. And that is okay. :)

The MacDonald Family said...

Wow, just wow. You need to write a book my friend your words are beautifully put. I can identify as well with the agreeing and disagreeing and I just love to hear all the different perspectives, we can learn so much from each other. Blessed to know you! :)