Monday, June 22, 2015

My Tool Bag

For most of our  marriage Tim and I have been at odds over tools.  When I was growing up, my dad had all his tools organized in the garage.  Some were in a red tool chest thingamajig, some were in Tom (a cabinet that *I* will inherit), and some were hung on the wall.  He always knew were everything was.  He always hung the pictures and really only ever had help from mom on the math to get stuff straight.

Well, Tim was never a tool guy.  He didn't use them growing up and he doesn't use them now.  Even though somebody gave him a tool set when we got married and Tim's dad said to keep them in the car (I still don't understand that one) he never used them and doesn't ever know where they are. (Regardless, my husband is awesome.  This is not a Tim bashing post... there will never be one of those.)

But I love tools.  I love sanding things and sawing things and nailing things.  I built the shelves in my big closet, in Ilse's closet, and in my bedroom closet.  I love carpentry.  I love hanging pictures, whether or not I do it correctly.  For years I'd slowly been accumulating some tools.  I had my own hammer that's not allowed in the garage and I had a few boxes of nails.  But **my tools always disappeared.**  I could never find them because someone else always used them and then lost them. Chris actually rusted a whole set of screwdriver bits because he dropped it in the sink and never told me or dried it off.

The other day I just couldn't take it anymore.  I reached the end of my rope.  The rust incident was the straw that broke my camel's back.  So I spent the $21 and bought myself a tool bag.



I filled it with all manner of tools.  I love it.  It is mine.  It makes me happy.  Yes it's pink; I'm a girl. No one else is allowed to use it.  Hopefully, never again will I search in vain for a tool.  "This is my [toolbag].  There are many like it but this one is mine."  Full Metal Jacket.



A First

Today we had the meeting for Ilse's first wheelchair.  We chose this one.  We're happy with it.  Ilse chose two colors (sparkly pink and sparkly dark blue) for the frame and the seat will be pink also.



It was bittersweet having to choose a chair.  First getting to the point where we realize we need one, and secondly realizing that it might be the first of many.  We don't know for sure, obviously, but I guess I've come to a point where I'm no longer quite as optimistic, just more realistic.  I know Ilse will walk, but I know she won't marry or live on her own and *it doesn't upset me at all anymore*.  I've completely accepted it and I'm looking forward to spending the rest of my life with my sweet daughter.  She and I are going to buy a red convertible and jet around town laughing our heads off.  And we are going to eat out and go to the mall.  I'm going to love my life with her.

Others are surprised, though, when I say the above about Ilse.  They still think she might live alone or get married.  I feel bad for these people because they are living in a delusion.  And the longer you live in the clouds the harder it is to come down.

Anyway, Ilse's chair will take a while to get here... maybe three plus months.  I'm excited about the possibilities.  I'm going to buy a princess license plate for the back of Ilse's chair, and some kind of cool sticker for the back of the car, too.  

So we've entered a new chapter in the life of a special needs family.  I'm just thankful I still have my daughter to love and buy wheelchairs for.

The Dream

I had a night mare the other night, and it's the second in a row with the same theme: I'm too tired to remember anything or sound smart or sensible.

The first nightmare was disturbing because it featured me looking my dad in the face and not recognizing him, but that was nothing compared to the second nightmare.

I dreamed that I entered a contest on KCBI, one of the local Christian radio stations.  I was one of four who entered, and Tim was another of the four.  The contest involved fitting the right number of thumbs into a small space and then being x-rayed  to see if we did the right number and if they were positioned clearly.  I was holding Ilse in my left arm per usual and had chosen to smash two fingers into the space.  I had a hard time holding the position but the radio person kept giving me extra chances.  Finally it came down that Tim and I won if we could answer the final question.

The guy asked me to describe our finances and I told him we didn't have any savings, etc.  I sounded pretty decent but way too bright and cheery.  I think it was early morning by that time as the contest had begun in the middle of the night.  Then the guy asked me to solve an equation that was something like 1500(2) + x = ??.  Except I didn't hear the whole equation because I was so drowsy my mind wandered in the middle, so by the time the radio host got to the end and was waiting for me to answer, all I could come up with was "I can't do math!" in a fake southern accent... I sounded as stupid as the two following women:


and



In fact I sounded more stupid.  I knew I sounded stupid but I couldn't fix it.  I didn't try to explain.  Then the radio host moved on to Tim and he got the answer correct.  Of course he did, because he's not quite as exhausted as I am apparently.  Then we were off the air and the radio host told me he wanted to speak to me.  He said that he was sorry he sounded so hard on me, and that's when I explained my life to him.  I told him I have a disabled husband, a son with mental health issues (in my dream I told him the whole story about that), a child with a syndrome, etc.  I told him I know how to do math but I was too out of it to realize I could ask him to repeat the question because I'd dozed through it.  He was sorry but of course there was nothing he could do to repair my reputation, but at least he didn't think I was as stupid as I'd come off.

Then we were walking out and my parents met us just off the staging area.  Mom said someone had hugged her and said, "I'm sorry" to her for how dumb I was.  And my poor dad was just in disbelief.  Mom said that this was the best I'd ever looked and most fluent I'd ever spoken on camera and it was too bad that I'd just come of as.... (she paused) stupid.

Then I woke up.

I didn't even get the satisfaction of hearing how much we'd won.

I still haven't gotten over that dream.  It made me feel impotent (first definition, not the second) and ridiculous.

I hope I don't come off that way in real life.  I hope I can continue handling my life (with God's help and a huge helping of grace).

Monday, May 25, 2015

Honesty

I'm compelled to walk a fine line when I want to be honest about something.  On one side of the line is the honesty that is phrased so gently and tactfully that it can't possibly hurt any reasonable person's feelings.  On the other side is brutal honesty.  Sometimes I feel cheated because my whole life I've stayed on the gentle side of that line.  I don't get to let out my honest feelings very often at all.  I don't say a lot of things because they seem hurtful to some random aquaintance or because I know something in someone's history that makes me not want to come down with an opinion or statement about various issues.  But that leaves me feeling shuttered and alone.  If I don't say things then no one can identify with me.  If I don't say things any prayers for me will be pretty vague.  And while the Lord knows everything, of course, I'd still like the freedom to be a little more honest.

But when I think of things I'd like to be honest about, my mind goes blank and I realize that not only do I not currently have any thoughts in my mind that I can articulate, but that I'm conscious of a deep void where those thoughts used to be. 

And that void exists because I'm just so weary.  I keep trucking along and put a good face on it, half the time because I don't want people to worry and the other half the time because I am so forgetful and 'thoughtless' that I really am ok.  I've forgotten what's wearying me and bothering me.  And that's pathetic.  So pathetic. 

All that to say that I'm going to try to move a little closer to the line in the middle of what's honest.  I'll never intentionally hurt someone's feelings.  But I'm going to be more honest of what I feel and things I need.

Monday, March 16, 2015

Dear SLOS

Dear Smith-Lemli-Opitz,

When the dr. sat me down and told me “Your daughter has Smith-Lemli-Opitz”, I was shocked.  We’d been in the NICU one week.  I’d barely recovered from my c-section and I was incredibly unprepared for a NICU stay, since I had two kids at home and a husband who couldn’t drive.  When I looked at my baby, I didn’t see the issues that made the drs in the NICU tell me that my baby maybe would never do anything. I just saw a little preemie baby; a girl who was much loved, wanted, and soft. I certainly didn’t see the ‘funny eyes’ that my husband had seen, and then, much to my chagrin, had brought to the nurse’s attention.  My husband had called me and told me the drs. wanted to test for you, SLOS, but I wasn’t hearing it.  I distinctly remember telling Tim, “I’ll deal with it” and laughing you off. When I agreed to let them test, I was completely convinced it was a waste of time. But then the test was positive.

I had at least heard of you, Smith-Lemli-Opitz Syndrome, since my niece has SLOS, but I never expected you to touch my children. I didn’t expect to learn the world of special needs, that of tube feedings and bath chairs and sensory needs and immunodeficiencies and AAC devices.

I cried the day you came into my family.  I think I would have held it together, but my dad showed up right as I was getting the news, and his tender hug broke down all my tough walls, and I cried as I told him.

I was lost that day.  You stole the child I thought I was getting; and the child I thought I was meant to have disappeared before my eyes.  You took so many possibilities, and you took them right away.  You didn’t give me time to adjust before hitting me with everything.  I read things online and I saw pictures that scared me.  And sure enough, my very tall three year old can’t walk yet and she can’t talk much either.  You prevented her from sitting up on time and from being a good sleeper.  The sleeping is what I dislike most about you, SLOS.  You took the ability to feel comfortable at other people’s houses, because I can’t put Ilse on the floor due to her immunodeficiency.  You took our ability to feed her normally.  You took her future wedding.  

But as time has gone by, I’ve learned about you, SLOS, come to peace with you, and dare I say it?  I’ve even become a little thankful to God for you. While it’s hard to know exactly how much you’ve affected my daughter-- how much is her normal personality and her normal looks versus how much is the syndrome, I like to think that a lot of Ilse is credited to you. You gave her the soft little body that I love to hold.  A healthy child would be more muscular and long ago would have grown out of wanting to be cuddled by mommy.  You gave her the mouth that turns down on the sides and the little pug nose.  You gave her the light red birthmark on her nose and the tiny toes that are slightly webbed.  You gave her the bird like hands that pat me ever so gently.  You gave her the sweet, childlike personality that won’t ever grow up.  You gave her the dancing wobble when she stands and her complete need for me. Even her disturbed sleep cycles have their good side, because holding my sweet daughter in the nighttime hours while we sit softly in her room is one of my favorite ways to spend time with her.  


2015-01-05 12.50.27.jpg


Without you, SLOS, I never would have helped start a nonprofit to help other special needs families not feel alone.  Without you, I’d still look down on parents who let their child with special needs be the center of attention.  You made me a better person. You made me a better mom.  

You’ve ensured that as long as my daughter is alive, she’ll need me-- I who was infertile for seven years and longed for the love only a child can give.  You’ve given me happiness and entertainment for my old age. You’ve brightened our family with the Joy that is Ilse Joy.  Even though you came to destroy us, God used you to make us stronger. I thank you for that, Smith-Lemli-Opitz. I thank you for that.

Sincerely,
Emily Joy Minich

Friday, March 6, 2015

Decision

I made a decision the other day.  I do this... I make decisions on the spur of the moment but historically they've tended to be good decisions and I've been happy I made them.

This time I decided that I'm going to bed at nine at night, no matter what has or hasn't been done.  If Ilse still needs a feeding, too bad; I'm going to bed.  She is fat enough, she will be just fine.  I might put her on the pump, but it just will have to depend on if she is awake or asleep.

I've been so sleep deprived for so long, and I've started to notice some scary effects.  The other day I couldn't remember the name of a lady at church.  I couldn't remember my uncle's name.  And then our nurse Angie came over and I was looking at her but I didn't recognize her.  I thought she might be a lady from church, but I wasn't sure.

I need to get some sleep before it's too late and something really bad happens.

So the past two nights I've tried to go to bed at nine.  The first night I totally failed.  Last night I made a real effort but still didn't get to sleep until around 11. Still, this morning I felt so much better.  Tonight maybe I'll make it by nine.

I need to do this for myself.  I used to think that moms had to serve their families non stop, rising early, staying up late, never tiring.  Not true.  It is true that moms have to take time for themselves or they will go kaput.  So I'm doing this for myself.  I can't wait to feel more rested.

Also, I've renewed my gym membership.  I'm looking forward to getting to do a bit of walking.  I used to walk around the lake every morning, but with the bad weather I haven't been able to.  I won't have to worry about the weather at the gym.  I'll take my phone and head phones and just mentally relax.  It sounds so nice.

Tuesday, February 3, 2015

Joey

It's been seven months since I posted last; most things are the same.  Ilse is still growing and developing.  Today she pooped and her OT covered her own nose and said, "Shew!"  Ilse imitated her perfectly, with her hand over her nose and said the same sound, too.  I wish I'd seen it, but I was resting.

I've had a heavy heart lately.  My husband got his long-desired teaching job this year and he has been working late a lot of nights.  I told him to do what he has to do; I'll keep the home fort and I'll let him know if it starts burning.  So far we're fine, but I do miss him.  I'll be very happy when he gets to be home more.

Mostly my heart has been heavy because of Joey.  He has been having so many painful struggles.  We had some neuropsychological testing done, and it turns out that he's severely depressed and anxious.  It was recommended to us that we pull him out of his mainstream class at school and not allow him back in for the rest of the year.  The school has been slow on scheduling an ARD and so we agreed to send Joey back to school if he was kept out of that classroom.  Today they put him back in for a short period of time without my permission, so now he will be home until the ARD.  The pediatrician (love her!) was not happy and sent a very strongly worded note to the school excusing Joey until the ARD is done.  A friend is going with me on Friday to the ARD.  I'm so thankful for her.  I'm not good at face to face confrontation (can do it online all day, lol) so I'm going to have to steel myself and make sure we get Joey what he needs to be successful.  Thankfully I have a lot of friends backing me up.

My Chris is the one with the front row seat to Joey's mental health issues.  He is so self controlled... I can't imagine what he's feeling.  He's not expressing any of it.

The Lord is merciful and we hold onto him during the hard times.  Some times are harder than others but the Lord is always there.