Sarah Laughed

Life in the Furr house has been a bit um, full of well--lots of things--lately.  And few of them good.  It's been kind of a rough ride.

I'm not even sure how or why it started, but suddenly my world just kind of started closing in last week.  Big things hit, and then I found myself crying because the resolution on my ancient laptop did something on its own (or with the help of a cat) and I couldn't figure out how to fix it (isn't that why I married 24 hour tech support???  So he can fix it?).  After that, it all went downhill even faster.  I'm not sure why it is that I can seemingly handle a few fastballs, then the dumbest curveball (my computer's resolution, either a quirk, or courtesy of my cat's overweight bum) is what sends me toppling over the edge.  I allow myself to become the devil's playground, and man, does he have a field day with me.

The fastballs...  I have a dear friend I love so much.  I have watched over the past several years as she has engaged in self destructive behavior, and every time she calls, I go running.  She called last week.  I tossed everything at Shawn as he tossed my purse to me on my way out the door, both of us questioning if the police should be called this time, and it struck me...  I'm enabling her.  I'm no longer part of the solution, I'm part of her problem.  That took the wind out of my sails, and when I got there, I know my attitude wasn't what she wanted or expected from me.  I came home and cried for everything I can't do for her, for everything she won't do to help herself and has done to destroy herself, and the position she's put me in.  I've realized I need to take a step back, not just for her, but for myself and my family.  I know that she will see this as abandonment, and I'm even angry at her for not being healthy enough to recognize that I'm stepping back because I love her, before I help her do more damage.  It's time for tough love, and she's going to hate me for it.  After a very enlightening session with my mentor, who lovingly yet firmly helps me come to these conclusions myself, I know it's best.

There are things that happened between myself and my mother this summer that I am still trying to comprehend.  I won't go into them here, partially because, well, I'm still processing the events two months later.  It's fed a lot into some of my other issues, and has left me reeling.  I do not pretend to understand her or her actions.  She scared me, and she scared my kids.  Until she gets help, I cannot allow her to be a part of their lives, so she has chosen to not be a part of our lives at all.  Even though I know that is her decision, and I need to move on, she is my mother and I will always yearn for the acceptance she is not capable of giving me.  It's very sad.

My niece recently had a baby, and she's doing her best to be a good mom to this beautiful little girl.  My great niece was unexpected, but my niece loves her daughter and wants to right all the wrongs.  She is making a genuine effort and I'm so proud of her.  I remember what I needed when Noah was unexpected, and what my family was unable to provide to myself and Shawn (emotionally), and I want to make sure my two beautiful girls get what they need and deserve.  I am angry at my sister for the way she has always put herself and her Whim of the Week above her children, and I am even angrier at the way she is now treating her granddaughter.  They deserve better, as do all of my sister's children.  My other niece is having many difficult medical issues, and my heart aches for the heartache she is suffering.  My instinct is to run to her and cover her in love, but she has stated she needs her space.  I know I need to respect that.  It's very difficult to watch my girls hurt.  They've always deserved better.  I don't have a magic wand to make the bad stuff good, and at times it's overwhelming to know what they've been through, and what they are going through now.

Every now and then, I become utterly overwhelmed by Noah.  I know that doesn't sound fair, but being his mom can be difficult at times.  It's truly a grief process--realizing that as much as he has going for him, and as much as life has to offer him, there are still things that life can't or won't do for him.  Does that make sense?  When you have a child with special needs, you have to grieve the things that will never be, and I don't think I've fully accepted it, even now.  I cannot accept that this is "all" life has for my son.  I fear for him, and sometimes, I even fear of him.  There is much turmoil in my heart and in my brain over my career as his mom, over his life path, and where this path takes our family on a daily basis.  Some days I just want to curl up in a ball and say, "No, I'm not going to do it today.  You can't make me."  Whether I like it or not, Asperger's is a part of our lives.  I can't ignore it, I can't deny it, I can't wave a magic wand...  Nor can I pray it away.  I love my son very much, but I do not love Asperger's, and I do not always know how to embrace it as a part of our daily lives.  Sadly, as a result, that often means I do not know how to embrace Noah.  I talked a lot of this out with an older friend of mine who survived raising teen daughters as a single mother.  My dear Rochelle never judges me, but she supports me, encourages me, cheers me on and listens.  Also, a friend from church visited.  She understands much of what goes through my head, and today I was so grateful for her mere presence I knew if I spoke I'd cry.  Again, no judgement, just understanding.

Topping things off is my health.  I have had flare upon flare upon flare.  My pain has been off the charts, and I haven't really had a break from it. A kind of quick lesson--a CPK, Creatine Kinase, is a muscle enzyme that can be measured in your blood.  They can break it down to specific organs, and even an enzyme coming from your brain.  If your blood is overloaded, most likely you have a muscle that has been damaged and being repaired by your body.  The high end of normal is 175.  My latest test showed my CPK to be 3245.  No, my computer didn't stutter, and yes, the lab ran it several times (Shawn said even after repeating the test, and recalibrating their machine, the lab still probably dumped the machine just to be on the safe side).  This is actually a "normal" number for me, even though it's obviously showing the signs of disease.  My doctor asked if I wanted the numbers for my heart, liver and kidney enzymes (also too high), and I laughed because I figured I'd cry at that point if I didn't.  My doctor wants to throw more meds at me, and wants a 4th muscle biopsy.  When I asked why he felt these were the best options, he shrugged his shoulders in a "heck if I know" gesture.  If he could've given me a different answer, I'd consider them.  I've known for a while that it's time for a new approach, and probably new -ologists.  I just don't know where, or how, to start.  We've been to NIH, we've been to Hopkins.  We've seen some of the best doctors and gotten nowhere.  I've even prayed for a diagnosis of Lupus, MS or even cancer, because then at least we'd have a definitive answer and treatment options.  Nine years ago, when all of this started, my doctors gave me two diagnoses, but I've never completely fit one of them.  It was just more or less a diagnosis of elimination.  I'm very frustrated, angry, discouraged, annoyed, frightened--you name it.  The other thing is, we've been fighting this for nine years--how much more time, effort and money do we want to waste on this, especially when we aren't feeling heard?  Much like with Asperger's, I want to rail at my silent illnesses that they need to leave.  I do not want to accept what they bring to our lives, I do not want to accept this is as what life has to offer me.

And underneath all of this....  The baby factor.  Shawn and I have been contemplating and praying about another child for the past year.  Just when we felt we had an answer, yes, all hell broke loose.  We already love this child so very much, and we love Noah and Avery very much.  Our love and concern for the children we already have is what has cooled our heels over a third child.  How fair would it be for any of them?  With so many questions about my health, and taking the chance of having a second child on the spectrum, would it really be wise to have another child?  On the other hand, with both of us approaching 40, and knowing how long it would take for me to get to a point where I can back off my meds, then actually do it, before we could even start trying for another child, Shawn and I feel as though we're running out of time.  Our other question is, why would God give us such a love, such a desire for this child, only to shut us down?

All of this has added up to a lot of stress, sleeplessness and just plain frustration for me.  I am weary, exhausted, depressed, angry.  I haven't been able to get through an hour without tears for one reason or another.

Now I guess it's pretty obvious why I cried over my computer's resolution.

My best friends have been trying to help me through this.  Both have been heavy-handed with the tough love, which has been necessary.  They love us, and they're concerned about us.  I need help.  Our family needs help.  Sharon has been loud about reminding me that God has not abandoned me or my family.  She has been loud about reminding me that God has made us all in His image, that He already knows my anger, my frustration and my depression.   She has been loud about reminding me that GOD is my Truth, not my father, nor my mother.  She has been loud about reminding me of all the blessings I do have, and all the things that do go right in my life.  She has begged me to not give up on God, and to not give up hope.  Then Sharon reminded me about Sarah.  Sarah prayed and prayed to God for a child.  It wasn't until she was in her 90's that God finally granted her prayer, and gave her a son.  And Sarah laughed.