The Tenderness of Children

For the last few weeks our Rose, 6 years old, has moved back into her little brothers' bedroom. Then the last week we keep she moved out into the hallway just outside of our bedroom door. We keep trying to convince her that she'd be more comfortable in bed, but she adamantly remains where she is.  My husband had a talk with her this morning about why she is sleeping outside of our room.  She told him, "because I'm worried about Mommy."

We've talked to her about the possibility of me having Multiple Sclerosis like my grandfather did and we told her all the things that can mean. She knows that I'm scared, but that we also don't know everything we need to know yet.  So my darling little six year old daughter has taken it upon herself to sleep outside of my room to make sure I'm okay.

I don't know if its because I always sleep on their floor when they are sick, because I'm worried about them and want to make sure they are okay.  Or if its just her fear that I won't always be around.  Either way, I am deeply touched by her love for me. You are truly my darling, Rose.

Learning to Live With the Unknown

For the last two years our family has been given diagnosis after diagnosis. We've been doing our best to accept and deal with each one as they come. There are days that are easier than others. So far, we've been told Rose has Sensory Processing Disorder, that Cyprus has Autism, and that Juniper possibly as ADHD, Autism, and Pediatric Airway Disorder. And that's just the kids.

In the last two years I had to have back surgery due to a ruptured disc from picking up my son, heart-rate problems, chronic migraines, dislocated ribs and collarbone, extended family illnesses and divorces, and recently we were told that I might be suffering from multiple sclerosis.

The chaotic-ness of life has triggered depression and anxiety for me, and upped the anti for my husband as well (for a great blog post about what its like dealing with depression click here; https://randommormonmusings.wordpress.com/2014/08/13/on-depression-and-suicide/).

The greatest difficulty in dealing with all the ups-and-downs, and waiting times for various specialists (for us and the kids) is to never give up. It's not exactly "pulling yourself up by the bootstraps."  It's realizing that, even in the midst of a lot of crap, there are still beautiful things happening. I still fall down. I still have my moments where I curl in a ball literally and break down sobbing. And I still detest the ambivalence that comes with waiting for firm diagnosis. But there are a lot more positive things that I've learned or remembered:

- I love naps.

- I love the quiet

- I love dark chocolate

- I love really complex books

- I love to write teenage angsty stories

- I love the sound of my children's laughter

- I love getting to know extended family again

- I love the power of prayer on a person's soul

- I love my husband more than life itself

- I love volunteering at the library

- I love painted toenails

- I love clouded skies and green grass

- I love my children's hugs

- I love locked doors

- I love Zupas salads & Wisconsin Cauliflower Soup

- I love Cravings Bakery in Pleasant Grove and their gluten-free cupcakes

- I love clean sheets

- I miss going to church on a regular basis

- I love to make up songs about everything

- I love listening to scriptures on my MP3 player in my car

- I love jazz music

- I still dislike doing genealogy, but love learning about the individual stories (go figure that one out)

- And I have amazing friends


So even though life has been insane for the last two years, there are still a lot of little things that make my life beautiful just the way it is. 

Every Day Heroes

My sweet Rose is struggling figuring out how to cope with several trials our family has experienced lately. As a result, her teacher tells me that she is often weepy in class. I explained to Rose's teacher what was happening in our family and she told me that she was planning on changing up the seating anyway and did I know of anyone who would be a calming influence for my daughter.  Two names came to mind and I passed them onto the teacher.

A few days later I saw one of these kids' mom at church and talked to her. I told her what was going on and that I had recommended her daughter as a calming influence and someone Rose could sit by for help.  I asked her if that was okay.  I am so grateful she said yes. In fact, the discussion led to scheduling a playdate for the very next day so that the girls could spend more time outside of class and learn to be there for each other.

This morning I walked with the kids to school because Cyprus and Juniper don't have preschool on Mondays. Poor Rose kept getting upset and beating herself up verbally the whole way to school. When we got to school Rose got in line and we waited with her trying to help her calm down.  Then this wonderful friend showed up and asked Rose to stand next to her in line.  Immediately they started talking and laughing and planning on what they were going to do for their play date after school.

I am really grateful for an incredible teacher who listens and understands. I'm grateful for a friend who lifts and supports me. And I'm grateful that her daughter could be friends with my daughter and immediately take it upon herself to look out for Rose.  She even promised she would help Rose by studying the spelling words with her. 

I am truly surrounded by every day heroes.

What is Normal?

I am used to doing things abnormally in my life. I mean I rode an exercise bike when I was a teenager only to have the bolt fall out of the seat. I promptly fell backwards onto the floor and crushed the vertebrae in my upper back.  Who does something weird like that?  Me, of course.

Well, I had a really rough weekend taking a road trip with my amazing, sweet, adorable special needs kids.  The trip was great. The ride home, not so much.  The trip threw my kids out-of-sync and messed with their routines. When that happens its really easy for them to get upset.

We got home from our trip Saturday night and Sunday we stayed at home to recover at celebrate little Juniper's 3rd birthday a day late. But because he was already out of sync Juniper was grumpy all day and would throw things at me (his go to method of showing frustration for the last several months).  When Juniper decided not to eat his birthday cupcakes (Despicable Me Minions) we decided to give them to friends and neighbors.  I hopped in the car to take some over to a friend only to realize my car smelled like pee from some potty accidents during out trip.  When I got home I took out all the car seats and took off their covers to give them a good cleaning.

While they were being washed I had Cyprus' booster seat sitting on the couch. Juniper kept playing with the seat while jumping up and down on the couch. After a while he was getting tired and grumpy and started kicking me in the shoulder. When I wouldn't react he upped the ante and picked up Cyprus' car seat and threw it at my head. (I know have a concussion and got to experience an MRI of my brain today as a result.)

Between that and having dislocated my collar bone trying to give things to kids in the backseat while on our trip, I decided to visit my friendly, local neighborhood chiropractor for an adjustment.  While adjusting me, my chiropractor asked me to lift my legs to see if I was having any difficulties with my lower spine. I couldn't lift my right one while laying on my tummy at all.  After a few more tries I told him that it felt like my knee had locked up. 

"Hmm, that's odd."

He felt around a bit and realized I was right and he had to adjust my knee as well as my back.  I made mention at the time "I don't do things normal."

He had the best response I had ever heard.  "I don't believe there is any such thing as normal.  Normal is more like an average than a specific state of mind."

I LOVE THAT!!!!  So who cares if you aren't normal. That just means you aren't average and there is nothing wrong with that.  Enjoy doing things in your own unique way and stop trying to "fit" in.  You're amazing the way you are.

Migraine Mischief

Last night was very difficult for me.  I suffer from chronic migraines and last night's was a doozy. My husband and daughter went to go help someone move in. While they were gone, Cyprus and Juniper took to beating each other's heads against the way, throwing each other across the room, etc., all in the name of good wrestling fun.  The only problem with that is it freaks this mommy out.  I hate seeing my kids hurt each other (even if they don't realize that's what they are doing) and I can't even read their minds to figure out why they were doing it in the first place.  All I know is that when I'm suffering from migraines my kids honestly instinctively amp up the mischief by 1000%.

After about 45  minutes of trying to break them up I finally called for a bath night. I quickly got Juniper in the tub and went to go hunt down Cyprus. By the time I had returned Juniper was taking the bucket that we wash their hair with and dumping it all over the bathroom floor, flooding the towels, floor mats, etc.  I was beyond livid and in a lot of pain by that point.

After my husband got home and we got Rose in the bath, Frank's mom called. When I got to talk to her I went into the boys' bedroom because the sound of two rambunctious boys bouncing on our bed to They Might Be Giants ABC's was more than I could handle.  While I was having a lovely conversation with my mother-in-law I was laying on Cyprus' bed. When Cyprus came into the room and saw me in his bed he grabbed his two favorite blankets, covered me up, said "Goodnight", then closed the bedroom door and turned off the light.

First of all, he has never said goodnight to me before. . .ever.  Secondly, it was the sweetest, kindest thing he could do after the rough night we had.  Suddenly, I was no longer mad at my kids.  And when he came back into the room he walked up to me and started rocking my body back and forth saying, "Hey! Wake up!"  All I could do was laugh.

Even after rough days I really lough these little squirts.

Fighting for your kids

I was so thrilled last week that my son Juniper finished his tests for getting into preschool.  I figured, "Great.  We have a week until his birthday and then he'll get to start school the very next week."

Well, its now Wednesday and his birthday is Saturday and we haven't heard a thing.  Before we could figure out what days he would be going to school and when he would officially start preschool we have to have his IEP meeting (individual education plan). This meeting is where they officially tell me that Juniper is delayed enough in multiple areas that they are going to send him to preschool.  I was told they would send me a write-up in the mail over the weekend and contact me ASAP as to when we'd have the meeting.  I was told it had to be before his birthday.

Today I emailed the preschool teacher (simply because she's awesome and I know her and she's Cyprus' teacher) and asked if she'd heard anything about Juniper. She responded in less than 30 minutes that she hadn't, but would contact me as soon as she did.  So I went and called the special ed assessment center and asked about when his IEP meeting was scheduled for.   They politely took my information and said that they will "look into it".  That was this morning and I haven't heard anything yet.  Well they have two school days left before his birthday. I hope they figure something out quickly.  Supposedly he's supposed to start school next week. 

We'll see.

But that just proves to me once again that when you are a parent (especially if you have SN kids) that you constantly have to be willing to battle for what your kids need.  SO never give up. You can do this. (And so can I.)