New Shoes

For the first time in four years, Abby's feet changed sizes and she needed new shoes.  I've bought new shoes for her in the last four years because I wanted to, but in reality she could have worn the same pair the entire time.  She doesn't walk, they don't wear down and her foot didn't seem to grow (fun fact:  weight bearing encourages our bones to grow, so not standing on her feet probably contributed to them being small). 

Abby does not necessarily like change very much, so when she seemed excited about the idea of getting new shoes, I was excited too.  If Abby was going to get shoes, Emily who is a true girl and LOVES shoes should definitely get a new pair also.  So a mall excursion this weekend led to two new pairs each. 

This morning, I picked the girls outfits out so they would look best with the new shoes for summer school.  I got them dressed, fed, and then it was finally time to put the new stompers on their feet.  I  put the last bite of cinnamon raisin toast in a mouth and was thinking all the bloggy thoughts of change and how slowly it can come sometimes.  The words were rolling around my head of how it would come together when I started to put the first shoe on Emily. 

At that exact moment, Abby changed her mind about new shoes.  She freaked out.  She started screaming as I put the shoe on Emily.  I offered to put hers on first, which sent them both through the roof.  My quiet morning slammed head first into chaos.  I only had 10 minutes before the bus came, I still had to brush their hair and teeth and get those darn shoes on their feet.

They kicked and screamed and I fought and pulled and finally got the shoes on them.  They fit great, they looked great.  Why were my crazy girls crying?  I was so mad at them.  It frustrates me when I'm trying to do something good, when I want them to be happy---even over a little thing like new shoes and it turns to dust in a second.  They will probably head to school and be perfectly happy with their shoes; they will likely be fussed over and told how good they look and smile and grin for their teachers while I sit here feeling defeated. 

It bothers me when they start their days upset.  It bothers me when they upset my day.  In 10 short minutes of solid spine curling screaming (it amazes me that no one ever knocks on my door to ask if I'm killing them), I let myself turn from confident mom who bought her girls shoes they loved in the store yesterday into crazy-crying-mom who wants to throw the shoes out in the lawn and be done with it. 

Parenting is just not easy.  Parenting children who can't tell you what in the world is wrong is just frustrating. 

I will pray that Emily and Abby have a good day.  I will yet AGAIN pray about the way I respond to them.  I will also pray for a miracle, I pray that God will heal them, give them the words they so desperately want to say and I so want to hear.  We should never give up on God.  Just because I've prayed for language for 12 years, doesn't mean he'll never give it to them.  I will also try to remember that from both God and my girls, there are still answers, even when there are no words.  I just have to listen really, really hard---which I'm just sayin'---is really, really hard to hear over all that screaming, Lord.

Swimmy Time

We have lived in Florida more than nine years now, and we have been blessed to have a pool for all of that time.  When we bought our house I thought it would be a good way for Emily and Abby to get exercise,  being that gravity is not their friend.  It pulls at their bodies; it holds them in positions their damaged motor cortex's can't counter.  In the pool, with that yucky gravity not a factor, they are free.   

When the girls were little they went to a school that was specially designed for children with disabilities.  They had an indoor heated pool that was a part of their weekly physical therapy.  Parents were invited to join their children during that time.  Of course I was excited about what I was still thinking of as an amenity.  The first time I walked in to the pool area at school, Emily and Abby were about 18 months old.  The giant pool contained six little physically impaired babies wearing special life preservers around their necks that kept only their head above water.  They didn't tip in them like they would in typical flotation devices.  My mouth dropped open at the sight.

I don't mind saying I was horrified.  It looked like a pool full of floating body-less heads.  It was absolutely nothing like I would have pictured "swim therapy" to be.  I thought of slides and balls and cute little animal floaties they would sit in.  Definitely NOT a bunch of bodiless babies floating around like jellyfish.  Noticing the look of horror on my face, the therapist gently said "they're free, for the first time in their lives, they can move on their own.  It doesn't matter what it looks like, only that they can".  I took a breath and deliberately and slightly resentfully stepped further into the world of disabilities as I changed my babies in to their swim suits and strapped on their "head floats". 

When we came to Florida, Emily and Abby rather forcefully let me know that they didn't appreciate the particular brand of "freedom"  I was now offering them.  They hated our outdoor, unheated pool.  They didn't like being held and played with in the pool the way I thought would be fun, and I had a personal vendetta against the floating head. 

This year, as almost always happens in life, I decided to meet my girls on their terms.  I determined that they really needed exercise and I wanted them off of their bottoms for a while.  I made the executive decision to incorporate pool time in to our summer daily schedule.  I strapped on the floating head device and in we all jumped. 

They have done awesome.  Abby loves it, she kicks and moves splashes.  Today she tried to bite the girls floats, which was insanely funny.  Emily needed a little more convincing.  I printed an article for her on the benefits of sunlight and metabolizing vitamin D.  It worked for that funny girl. 

I realize that yet again, if I could get out of the way and take my ideas of life with me, my girls have more fun.  The things that make me feel safe, secure and free are not the things that make them feel that way.  Instead of trying to make them better or look like my other children, I set my foolish pride aside and have fun with my girls the way they can.  I watch their little heads bobbing in the water and the smile on their faces and feel grateful that I can still learn.  I am grateful for children who teach me such great life lessons by simply floating in a pool.

So much happens everyday in the life of raising children with disabilities, I really shouldn't wait so long to hit the computer keys.

Now it's time to catch up! 

Happy News first:

Jeff's been home a few times, and we are all doing great.  I am so far beyond surprised that I can handle this at all.  I thought this time apart from Jeff would be about surviving, like some sort of wilderness trek involving heavy loads, exhausted days, and conservation of provisions.  My friend reminded me early on that our God is not the God of just surviving, He is the God of thriving.  It is a heavy load,  and I am exhausted at the end of the day, but it's that good kind of tired that tells me I've accomplished something that day.  The girls are taken care of, the house is usually pretty clean, I am learning to ask for help when I need it.  All in all, I miss our family together, and I eagerly wait for the day when we are, but I appreciate what God is showing me about Him in this time.

We are hosting Vacation Bible School at our church this week.  I teach the special needs class.  I can't tell you how much I love these kids.  They are so smart and funny.  We laugh and have fun and learn about God.  I love this class because when I first started in church, I said repeatedly that I would never want to work with special needs children.  I felt like I had enough of that at my own home, I definitely didn't want to spend whatever free time I had with other special needs kids.  Silly Rabbit.  I'm not sure why we even think at all---God has his own plans, and my heart changed so fast in that area.  I love my kids.  Not the I heart chocolate kind of love, real love that stays even when they are gone.  These kids are a gift and I encourage any of you to give special needs ministry a try.  They need to know God loves them, no matter what as much as you and I do, maybe even more.  Spend a few minutes getting to know a special needs child, you will be blessed.

My precious daughter Sarah turned 10 Sunday.  Ten years.  She is my baby and I still see her walking off to kindergarten with her little back pack on.  It goes fast.  She's at sleep away girl scout camp right now.  I am not the kind of mama that deals well with her little pumpkin sleeping away from home with people I don't even know, so this has been a challenge for me.  I miss her  a lot, but I am excited for her.  I can't wait to hear all about it.

I'm sure there is much, much more but those are the highlights. 

Now the other news, I'm not going to call it bad news because the bible says that all things work together for the good of those who love Him and I do, so I'm sure there is a reason for everything. 

One week before the last day of school, Emily had two seizures at school.  Emily had one seizure last summer, none before and none since.  She was at school when she laughed and then had a 6 minute seizure, followed by Todds paralysis, which looked like a stroke with the right side of her body paralyzed.  I was afraid that she had had a stroke, but Todds paralysis occurs only with seizures and thankfully, always resolves quickly on its own (she was almost completely back to normal before we left the hospital).  She had a second seizure as the ambulance arrived.  Getting the phone call that something is wrong with your child is awful.  Even though I know most seizures look scarier than they are, even though I know she's going to be alright; I had to see her, touch her, feel her warm skin on mine, watch her open her eyes and know she is still there.  Then I can breathe again. 

We get her EEG results today and decide where to go from there.  I don't want seizures in my life.  I want to stomp my feet and cross my arms and say enough is enough.  We do not need another thing to think about, medicate, deal with.  I could stomp my feet and be a baby, but it's not going to change anything.  I just trust that we will handle this and Emily will be safe. 

I just realized I have one more good thing to add to the list, it's 8:39 am and Abby is still asleep!  Wooo hoooo!

So far, so good

It's been 2 weeks since Jeff left.  Overall, I have to just praise God.  The girls have been handling it well, all things considered.  I have done well.  Only in my head, when I think of it all, do I feel tired.

A few things I've learned so far:

• ~God is so very good.  As hard as this time is for me, I have felt his presence.  Even more, I have felt his guidance.  I am certain that He is moving me exactly where He wants me to be.
• ~Sometimes, it's just easier to do things myself.  We all love and appreciate our husbands, but honestly, knowing I can't expect him to do anything around here is almost easier than being irritated because he doesn't do it my way or in my time (there's probably a greater lesson there, but that's all I have to say about if for now :). 
• ~I'm stronger than I think I am.  I always secretly wonder if I could really do what I do if I didn't have the opportunity to be a stay at home mom, and if I didn't have a supportive husband.  I think the answer is definitely NO.  I couldn't.  But, I think I would still make choices I am proud of.  It's only been two weeks, but in my life, that's a very long time and I'm doing better than I thought I would.
• ~I'm tired.  This is really, really physically very hard. 
• ~I miss my husband.  I've spent the last 18 years with the same man; the last 12 we have raised disabled children together.  I have always had a little pocket of fear in my heart about my marriage.  I've wondered if we didn't need each other so much, would we still be together?  Would we work out all of those difficult times and frustrating moments when we wonder if we even like each other, much less want to be married?  It is a joy to know in my soul that I choose him.  It is a wonderful opportunity to discover that I don't need him in the way I thought I did, but that I want him.
• ~I have a long way to go.  Each day is filled to the brim with challenge and opportunity for all of us. 
• ~Emily's new service dog snores.
• ~Transformation is inevitable.  One day, if the good lords willing and the creek don't rise, I will look back at me here, a baby in this journey.  I wonder what I will see, where God will bring me. 

It is exhausting to be here, I think that at least for tonight, peach pie ice cream is the answer.  I'll try it and see how it works out.  Maybe it will make the next "things I've learned" list.