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.  


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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.




Wednesday, July 2, 2014

Honest post

I've been a little discouraged lately, or at least that's what I think is at the bottom of the grumpiness that I've been feeling.

I'm not sure what I've been discouraged about, but maybe it's my sleeping.  I can't manage to sleep at night.... I'm thinking I maybe should not take my anti-anxiety med for a day so that I can take benadryl instead and maybe give myself a good night's sleep.

Maybe I'm discouraged because it's hot and being hot always makes me feel larger.

Maybe I'm discouraged because I'm too tired (see number 1) to exercise.

Maybe I'm discouraged because the boys haven't been listening very well.

Maybe I'm discouraged because I haven't seen my sisters in awhile.

Maybe I'm discouraged because we haven't made it to church in awhile.

Maybe I'm discouraged because some in our church are being swayed by false doctrine.

Whatever it is, I know that God is with me and loves me.  Say a prayer for me, ok?

Thanks.


Friday, June 20, 2014

Domesticated Part 2

I made one New Year's Resolution this year.  Only one.  I told myself that at the end of the year my feet would not look horrid.

Since January, I've waffled back and forth on that resolution.  98% of me didn't care what my feet looked like.  I have so many other things to take care of.  My feet are number 962,344,321 on the list.

But then I read about sugar scrub and, since I'm being domestic, I decided to make my own.  Before I did, I scraped my feet down so that the massive callouses would be gone.  Then, after I vacuumed the massive pile of dead skin, I washed my hands and made my scrub.  I used brown sugar and pomegranate infused olive oil.

It was LUXURIOUS.  Rubbing that stuff on my feet made me so happy.  My feet were so nice and soft after I got out of the shower.

So, at risk of being risque, I have to say, soft feet are SEXY.  They feel so nice.  I can give up the ease of scratching my leg with a calloused foot when I can't bend down to scratch it myself because I'm holding Ilse or driving.  Yep.  Sugar scrub.  I'm a fan.

Domesticated

I've sure been being domestic lately.  I've made four desserts in the last three week or so.  I've been making dinners (gasp!) occasionally that take more than one bowl.  I've been cleaning my shower and have gone through Ilse's closet to get rid of things we don't need to keep.

I found a recipe online for Raspberry Cream Italian Sodas and they are delicious!  Here's the recipe:

Raspberry Cream Italian Soda

Put ice in your glass. Fill glass 3/4 full of soda water (also known as seltzer or carbonated water). Add 2 TBSP of Raspberry syrup. I bought mine at Starbucks... theirs is the cheapest! Add 2 TBSP of half and half. It will be swirly in the glass. Leave it that way and your guest can stir it with the straw you serve it with. Top with whipped cream and a cherry. These ingredient quantities can be tweaked according to your taste.  Enjoy!

Rebecca told me about an easy way to make Iced Coffee.  I haven't gotten to try it yet since I haven't found my coffee press.  That recipe is:

Easy Iced Coffee

1/3 cup coarse ground coffee
1.5 cups water
Put together in your coffee press.  Store in the fridge overnight, and plunge in the morning.  Flavor according to your tastes.  

I bought cinnamon dolce syrup from Starbucks.  It's cheap!  I hope to find my coffee press today.

I hope you are all having a good day!

Tuesday, June 10, 2014

My Son

One of my sons has really been on my mind lately.  Tim and I have just realized how, gosh, I don't even know the right word..... mentally slow (?) he is.

I had this conversation with him this afternoon:

Mommy, can I broom the porch? 

Son, how many times have I told you it's not 'broom'? 

Son, confused: Mop. 

No, sweetie, it's not mop. 

Son: Broom! 

Honey, didn't we just talk about how it isn't 'broom'? 

Son: Mop! 

No, honey, mopping is wet. 

Son: Broom! 

No, honey, we just said it wasn't broom. It's SWEEP.



He's a strange mix of wisdom and confusion, of competence and absolute inability.  


He's going to take careful teaching and extra help along the way.  And he needs people to be understanding and kind to him when he's slow.

Before we adopted the boys, the social worker told me, "We want to make sure you understand that they are going to be mentally challenged."

I told her we knew, but I was thinking in my heart that our son's real problem was the neglect he'd endured for four years.  I was confident he could learn and would be *'normal'.  

I was so wrong.  He can learn, but not like I thought and he'll never be normal.

We don't regret adopting him.  That's not what I'm saying at all.  But I am sad about it.  He's going to have trouble in life.  He's going to be looked down on and he's going to have to have help doing some normal things.

Tim needs help doing some normal things (driving, etc.) and he is looked down on by some people.  People are impatient with him fairly often.  And in comparing him and our son, our son's mental challenges are worse.  It breaks my heart.

I'm glad we've discovered now how slow he really is.  He is oh-so-good at faking understanding.  But he doesn't understand, and I have to remind myself very often that I need to be patient with him.

*Normal:  I know people hate that word.  But it is what it is.