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Questions, not answers…

29 Comments 17 June 2010

MH at VSA Arts of Alabama

I don’t understand my life.  I have alluded to that in a couple of posts these past few days and I am sure most of us have aspects of our lives that we simply can’t wrap our heads around.  Life just simply isn’t as it should be.  For me, of course, that part of my life, or at least at the top of the list of “Things that Shouldn’t Be” is my daughter and her struggles.  She is a ball of complexity, one moment she can have me laughing and the next moment she can have me wishing I could run away forever.

Most people don’t really know my daughter.  They get her in little increments and those short spurts are her most medicated and structured times, therefore, she is at her best.  So, when they tell me how sweet and delightful she is, I don’t want to disagree, because she can be those things, but it is only a smidgen of what it is really like to live with her day in and day out.  At the same time, there is this compulsion to tell them that they don’t know the half of it, not to bash my precious baby, but to bring them into this lonely world of mine, to help them understand the weight of it all.  Usually the moment passes, I make some silly comment about how she can be a “real angel” and we move on.

People also want you to feel better about your circumstances so they say things like, “all kids are like that” or “my kid is JUST like that” and they are truly trying to sympathize.  Their comments aren’t bad, it is just that they are comparing apples to oranges as my mom would say.  And truly, most people don’t want to dive into the mess that is my life.  It is painful and awkward to really hear how devastating it is to have a child that is mentally retarded.  How it changes everything, how you feel the weight of it every single minute of every single day.  How your marriage is changed irrevocably because you never feel sympathy for your spouse.  You both approach this devastating loss with a different lens and inevitably, one of you ends up bearing the weight of it more than the other.  Few marriages survive the birth of a special needs child, and the ones that do are never what they were before.

Then there is the impact on the other children in the family.  For us, having MH takes most of our energy, most of the time.  She has to be constantly monitored and attended to…there is rarely a moment when there is not someone answering her rapid-fire, repeat barrage of questions.  She is on the move, from room to room, like a Tasmanian devil of sorts, aggravating, instigating and agitating.  Our kids are troopers and they handler her with greater ease than I could have ever hoped, but tempers flare and patience runs thin at times.  MH doesn’t really have the capacity to know when she hurts your feelings, but it is hard to remind yourself of that all the time, so inevitably the other kids take her assaults personally from time to time.

Her impulsively and her destructiveness doesn’t land us a lot of vacation invites or dinner invitations to say the least.  We have few family friends who really get her and are willing to endure the true reality of life with MH.  My best friend and I became friends because of her empathy both for me, as a mother of a special needs child and for MH.  She has a brother with Williams’ Syndrome and knows what it is like to grow-up with a special needs child.  She has seen it first hand.  Interestingly enough, she is a single mother, so the help goes both ways with us.

I really hate summers.  MH loves school and her teachers are truly saints in my book.  They know her as well as we do (almost) and love her well.  When she is out of her routine, she is mean and frustrated and this makes our home a very difficult place.  The weight of being her mom feels heavier as my weaknesses are more glaring.  I am very independent and I am a much better mom when I have opportunity to have time to work and relax away from my house.  Summer has not afforded me that opportunity as of yet and I feel like I am losing my mind today.

This all was exacerbated when our air conditioning went out this past weekend.  MH is very OCD and has severe sleep disorders.  She takes medication for both, but really needs to sleep in her own bed if at all possible.  Our house was around 87 degrees and I attempted to get her to sleep at my best friend’s house.  She loves my friend’s house, she loves her family, they are family to MH, but her anxiety was too high and she just could not shut her brain activity down.  I was growing more and more frustrated, knowing that our house offered a night of fitful sleep if I took her home, but nothing I did seemed to help her settle down.  It is in moments like these that I feel the future closing in on me.  I feel the weight of the reality that MH will always be with me and as horrible as I know it makes me sound, that terrifies me.

I love my children.  I love being their mother.  I see being their mother as the highest calling of my life.  But, it is only one calling.  I want to travel, I want to write, I want to study, I want to live in New York City, I want to be gone for months at a time and not have to worry.  All of that seems impossible when I think about the fact that my baby girl…will always be a baby girl.  And so there it is…guilt.  My constant companion.  There, I said it, now you, my new online friends and my old friends who have known me for decades.  I have put it out there in plain sight.

I will be crucified by some as they will see my baby girl as God’s calling for my life and I will be told by others not to let her hold me back.  But all I know right now is that i have questions…no answers.  I do believe in God.  I do believe that God is an active force in this life of mine, even daily.  So, for now, I choose to live in the mystery of not knowing the answers to my questions.  I live in the giant smile of MH, who says “Mooommmy” with the cutest intonation you have ever heard in your life and I beg God to help me lay down my guilt, knowing that I was created just as I am, my independence and my dreams.  And again, I cling to MH’s phrase, “Oh well, we’ll see…”

One of the best things about this blog has been hearing from some of the people from my past that I would love to live next door to…one of those people is my friend Lori who lives in Louisville, Kentucky with her husband Jud.  I wish she lived next door and we could have a glass of wine on my deck every afternoon.  I would like that.  I was cruising over her husband’s multiple websites this morning and saw that he too likes Rainer Maria Rilke.  He seems to like questions a lot too!  Thanks Jud for reminding me of this quote!  Cheers Lori!

Here is a favorite quote from Rilke that we both seem to enjoy.  I long to “live the questions” now in the hope that I might live my “way into the answer.”

“…I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”  – Rainer Maria Rilke in Letters to a Young Poet

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29 Comments so far

  1. Tracy says:

    Dear friend this might possibly be one of the most beautiful things I have ever read. Thanks for sharing your heart in such an honest way. Love you and love reading your blog!

    • Jorja says:

      Tracy, honesty isn’t always pretty..ha! I love that Rilke quote and do believe that we should live everything…and for me, there are far more questions than answers! love you too! thanks fro reading, send my blog to all those florida girls!

  2. Cris Buckley says:

    Jorga, love your openness, your honesty, your frustration and the choice to live that awesome quote. There have been a couple of life situations, although not yours, where I can relate.

    In one situation, when I was homeschooling, I had a very wonderful but intense child and had to run away from home regularly.

    After a while, I simply scheduled it in as preventive maintenance. I told my husband that one day a month on a Saturday, I would be gone from sun-up til sundown. He could watch the kids himself or get a babysitter, but I would not be home.

    Is something like that possible for you while you are “living the questions”?

    • Jorja says:

      Cris, yes, my husband is great at letting me get away. However, money has been so tight, hell, there is no money right now! ha! so it has been far more difficult to travel and that is really where i feel like i get refreshed. we all need to leave our Big Lives and get away…it is good for the soul!

  3. Jen says:

    Jorja, I love you. I read this with tears. I have felt that, “I just want to run away” feeling the last several days as my kids have fought constantly, but I know that feeling doesn’t even compare to yours. I want you to know that you are a GREAT mom – I’ve always thought so, always will. Thanks for having the courage to verbalize your inner struggle – I’m sure that wasn’t easy. “Praise Him who daily bears our burdens.” Love you friend – keep writing…:)

    • Jorja says:

      Jen, hey lady! didn’t know you were hangin’ round here! thanks for the love. i don’t know if it’s courage or stupidity, but i do think it is good to tell the story. there are so many of us out there in similar circumstances. and truly, we all know that things are not as they should be in some part(s) of our lives. love you too!

  4. Judy Helfand says:

    If only we could easily wrap our heads around what we find to be our life. As I read through your last few posts my head started to spin, thinking of friends who have lived their dreams without a hiccup, or my mother who was indeed “selfless”, but was firm in maintaining her sense of “self.” She was a strong woman and learned from an early age that being able to support yourself is important, as you never know what lay around the next corner. When she was about 35 my father became quite ill and was given six months to live. At the time she had three little girls, 9, 7, and 4 (me). Thankfully she had a college education and she could get employment as a registered nurse. The “miracle” is my father lived for another 25 years, they had another baby (a boy), and she continued to work off and on until she was 75+.

    Forever is a long time. I am sure when my mother received my father’s diagnosis she grappled with the “forever” part. I know we all lived the “forever”. I am thinking it is the “forever” that you struggle with as you say: “All of that seems impossible when I think about the fact that my baby girl…will always be a baby girl. And so there it is…guilt. My constant companion.”

    And “forever” is what most friends, relatives, neighbors, co-workers cannot understand unless they are living in their own “forever”. It is how I imagine a grandparent just loves visiting with their grandchild(ren), but almost always knows is it not “forever”, unless of course it is.

    I don’t have answers. I do have observations…
    First, I have a really good friend, Katy. She is a registered nurse and she loves working with the mentally and physically handicapped. She worked for years, until just recently, at Fairview Developmental Center in Costa Mesa, Calif. See this TIME Magazine article Growing Old With Autism. You may have read it; the center they discuss is Fairview. Katy is in the process of moving back to the Boston area to be closer to her family. I wish you knew Katy, I wish Katy could come and spend the summer with your family. She would think she had died and gone to heaven. This is a dream…but maybe there is a “Katy” in your town.

    Second, I think too often the average adult watches a movie like “Rainman” and they have no idea what your “forever” is about. Reality is romanticized with the likes of Tom Cruise and Dustin Hoffman and money! I think the new NBC drama “Parenthood” is trying to deal with your “forever”, but these are actors who get to go home at the end of the day. I don’t know if you ever saw the movie, “My Left Foot”, a true story realistically depicting a severely handicapped child and his mother’s sense of hope and “forever”.

    Finally, I am hopeful you can live your way into the answer. As Kermit says: “It is not easy being green.”

    To all of us who live with “forever” I sometimes remember an old song…
    Until the Twelfth Of Never

    • Jorja says:

      Judy, sweet, sweet Judy! you are so thoughtful…i know i keep using that word when i speak of you, but it is just the best damn way to describe you and your comments. i am grateful. our pediatric neurologist told us that we should “buy our family” for mari-helen’s sake and for the sake of our family. what she meant was that we should hire someone to live with us and help us with her around the clock. but that is the biggest rub. we have absolutely no money. so even paying a sitter for a couple of hours isn’t an option any more. your thoughts on “forever” are lovely and so are you.

  5. kate says:

    i love you… and what you wrote here is really important for all of us to read.

  6. Jackie Brown says:

    Jorja, I weep with you and want to rescue you yet am helpless. Today the questions that outweigh answers at our house drove me to tears as well. i was riding by your street this afternoon – thought of dropping in and now reading this – i really wish i had – if nothing else but for a hug and a toast to life.

  7. Misty Purcell says:

    Thanks for your beautiful honesty and for putting into words what so many of else feel from time to time (or all the time!). Luv u!

  8. April says:

    I totally agree with Kate. This is so important for me to read on many levels. Thanks for taking the time to write it. Thanks for being real! (not that I would expect anything less) I love you, dear!

  9. Kristy says:

    Hey, love. Your beautiful, broken, painful honesty in this post takes my breath. I can’t begin to understand the pain and joy you live but I do want you to know that I love you and that I see both the pain and the joy. I know I’m far away but I want to celebrate with you in your joys and sit close with you in your sufferings. Know that I’m holding you all in my heart and before the only One who can truly know your pain.

    I wrote a poem not long ago, from my own particular situation about the emotional tightrope I walk, but it might resonate for you. Here’s the link:

    • Jorja says:

      Kristy, thank you for sharing your poem! I love it and I love you. SO glad we have re-connected, even if it is virtual!

  10. Lori Hendrix says:

    It is so refreshing to read your honesty. Thanks for being so forthright. I have posted this on my fb page and forwarded it to some friends. I get so sick of hearing people put on a show, acting like life is all grand….or claiming that tough things are God’s will…..or whatever. Blah.

    Each day I read, I find myself hoping, even knowing that our paths will cross…face to face sometime. Thanks for letting this cyber friendship grow this way. I’m feeling all famous now that I made the blog. Ha! Keep it up my friend. You are blessed to be a blessing and what a blessing you AND your writing are!

    • Jorja says:

      Lori, i’ll take your friendship any way I can get it, cyber or not! Thank you for your love and encouragement.

  11. Clare says:


    I know it’s not why you wrote this post, but thanks for brave enough to say it. That certainly doesn’t make things any easier, and it doesn’t change anything, but because you have the confidence to say these things out loud, you should know there are people praying for you and your family. We can’t possibly understand what you all have had to endure unless we have been there, but we are surely trusting that God will continue to give you strength and comfort during the darkest of days.

  12. Cynthia Williams Insko says:

    I’ve reread this several times and have had you on my heart and mind ever since I started reading your blog a few weeks ago. You are an inspiration to me to be courageously honest and to write and to share what I write. Thank you, thank you, and thank you. Peace to you my friend.

  13. jorja! just stumbled upon your site last night! thanks for sharing your words with us. I relate on so many levels. thank you.

  14. amy says:

    this just makes me love you all the more. thank you for sharing your heart and giving me a deeper glimpse into your life…into the tension that lies within your heart. and i loved the quote…resonates deeply.

  15. Beverly Ficken says:

    Spent my last hour reading lots of your posts. Jorja, who knew that the kid in the fancy sweater pitching a fit on my dorm room floor had so much beautiful, breathtaking depth. You have a gift…How did you ever learn to communicate like this? I don’t even remember you studying?:-). I feel like I have been to life school this morning. You have opened my eyes. I will see moms with special needs kids in a whole new light…I hope and pray I can be the kind of friend you mentioned to someone. Thank you.

    • Jorja says:

      bev, you make me laugh out loud woman! took me back to the days…ha! i don’t remember studying either! your thoughtful words are so nice to hear. so glad to ‘see’ you! love you

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things to make you wonder~

“I am a frayed and nibbled survivor in a fallen world, and I am getting along. I am aging and eaten and have done my share of eating too. I am not washed and beautiful, in control of a shining world in which everything fits, but instead am wondering awed about on a splintered wreck I've come to care for, whose gnawed trees breathe a delicate air, whose bloodied and scarred creatures are my dearest companions, and whose beauty bats and shines not in its imperfections but overwhelmingly in spite of them...” Annie Dillard

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