Monday, September 22, 2014

Tea Cup

We took a mini getaway to Williamsburg to take L to Busch Gardens.  We've realized over the past year or so that she is a complete thrill seeker.  She loved the rides at our county fair, even riding them by herself.

She loved, loved, loved this trip.  Proof is in the video.  Enjoy!

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Wednesday, September 17, 2014

Photos from Flashes of Hope

Several months ago, I received an email from the child life team at L's transplant hospital informing me that Flashes of Hope was going to be at the hospital and asking whether I wanted a time slot for L.  I immediately looked into the organization and was so excited to take advantage of such a wonderful opportunity.  The organization provides free photo packages for children living with chronic illnesses.  I will never turn down an opportunity to have pictures of my girl.  I don't think we'll ever look back and say, we took too many pictures.

So here are some of our favorites.  We just picked them up last week.  The organization provides an envelope with all of the photos in 5x7, and two 8x10s, along with a cd of all of the photos.  How amazing is that?  And because L was being shy, I even got a photo with my girl.

(April 2014)


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Monday, September 15, 2014

The Reality of Summer Break

I didn't write on my blog this summer.  I wish I had some really exciting reason like we were traveling and living the life.  I hesitate writing the truthfulness of how things were, because quite frankly, I wish to forget some of these moments. But in my (continued) effort to be completely honest about my journey as a mom to a child with complex medical and developmental issues, here it is: the truth.

The real reason I did not write is that L was home for the summer.  I was looking forward to the summer home with her.  I had great plans for outings and playdates and adventures to make memories.  And we certainly had some outings and playdates and adventures.

But the truth is, it wasn't pure bliss.  In fact, some days I was so out of patience that as soon as Ian walked through the door, I said "please, I don't want to see or hear her for the next 15 minutes."  Saying that to Ian was embarrassing.  It produced tremendous amounts of guilt.  Carrying that guilt was awful: I was constantly questioning what kind of mother I was.  I kept thinking, we are so incredibly blessed to have L here with us, alive and thriving, and I couldn't wait to be away from her?  What kind of mom did that make me?  What is wrong with me?  All of these other moms are excited to have time with their children over the summer, and here I am, counting the days until she goes back to school.  

Almost as soon as summer break started, I learned a lot of new information about my girl.  L has transition issues - this, I already knew.  I just didn't understand how severe that issue was until the summer started.  She has difficulty regulating her emotions when there are transitions.  Like getting her dressed, getting her out of the house, getting her to move from one activity to the next.  I had not realized that her being in preschool 5 days a week was providing the stimulation (or something) that helped her regulate.  So take away that interaction with other children, that structure, and she fell apart.  She had tantrums countless times per day.  And when I say tantrums, I mean complete meltdowns for about 1/2 hour.  The tantrums typically centered around her not being able to tell me something - that she wanted to do it herself, or to do an activity a certain way, or that she wanted to do something else.  I felt like I was walking on eggshells asking her ahead of any activity to prevent the tantrum, "would you like to open the package of [enter food] or do you want mama to do it? do you want to pour it in the bowl or mama?  Do you want to put the blanket on the bed like this, by yourself or with help?  You show me how you want to play!  Where should mama sit?"  If I did anything out of order, tantrum ensued.  Nothing I said or did made a difference.  The fact that this was happening multiple times per day was exhausting for both of us.

She was impossible to get to go anywhere.  It was a fight to get her dressed which is saying something because under the best of circumstances she has trouble.  The slightest thing would set her off and there was nothing to be done but hold her and wait for her to calm down.  And when we would venture out, she was clingy, she was anxious at the thought of not being next to me.  She didn't want me out of her sight.  What had happened to my happy girl?  What was going on?

About the same time that I theorized that her frustration was a result of not being in school, we started her in private interaction group therapy (which is ridiculously expensive) to help.  Amazingly, the days that she had therapy, she had fewer tantrums.  The days she had no therapy, we were back to those long and frustrating days.  After a couple weeks of documenting her tantrums, I realized that there was a direct correlation to fewer meltdowns on therapy days.  Clearly, L was craving that social piece.

In addition to private group therapy, she was approved for extended year services through her school.  Unfortunately, with a diagnosis of "language delay," she only qualified for one hour twice per week.  So clearly, that was not going to cut it.  While it was helpful to know what she needed, it wasn't practical and we weren't financially able to provide therapy on a daily basis.  So it meant most days I was just hoping to get through the day.  Lots of days of calling Ian in tears.  I was exhausted - mentally and physically.  Even on therapy days, I couldn't leave her side at therapy (we tried, she cried the entire time).

To say I was excited for her to go back to school is an understatement.  I wanted my happy girl back. I wanted her to have what she so desperately needs.  Obviously, there were selfish reasons as well: I wanted to be able to work out and take care of myself.  I wanted to be able to dedicate time to my own doctors appointments and job searching.  She stopped napping in November of 2013 so her back at preschool is the only time I have to myself.

We are two weeks back into school and it is incredible to see L's change in demeanor.  Yes, transitions are still difficult.  Yes she has some tantrums.  But she is pleasant the majority of the time.  She is more independent.  She isn't ready to scream her head off for the rest of the day because she didn't get her way or cannot tell me what she wants/needs.  And when she does tantrum, the episode is much quicker and she gets back on track sooner.

This summer was a learning experience for all of us.  We now know that L absolutely must have camp or school during the summer.  She must have social interaction with other children multiple times per week.  She must have structure and be encouraged to be away from her mama.

I want to add that yes, we did have some great memories and outings this summer.  We had joy each and every day.  It wasn't all bad and tantrums.  But we certainly had a lot of it!

Now we know.  And it's a new school year...thank God.

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Thursday, September 11, 2014

Back to Preschool

My sweet girl started her second year of preschool a couple weeks ago.  The summer proved to be difficult with the change of routine so I was a bit nervous how starting the school year would go, especially with how hard the transition was last year.

Well, Ian took her for her first day and she walked into school like a pro.  No tears saying goodbye.

What a relief!  It certainly helps that she is in the same classroom with the same teachers.  Hopeful for better progress this year now that she is comfortable with the school routine.

(Picture before her first day - she cannot smile normally on command)

Unlike last year, we decided to let her ride the bus this year.  We felt that since she was comfortable with going to school now, that we would just totally mess that up and go ahead with the bus.  Great plan.  Kidding.  We thought it would be another transition, but one that needs to happen.  It allows her more practice at becoming independent and allows her to form more bonds with new people.  For a little girl who is super clingy towards her mama, we sometimes need to force her to do new things without me by her side.  It's good for both of us.

We had the bus start coming to pick her up a week into school.  We had been talking about it with her for weeks now.  That the bus would come to our driveway, she would get on with one of her lovies, say goodbye to us, and the bus would take her to school without mom or dad.  That when school is over, the bus would bring her home and Tessa and I would be waiting for her.

We went outside at the designated time and she was excited.  The bus pulled up and she got on excitedly.  Then we said "bye L - have a great day!", and the tears started.  We reminded the driver and assistant that her lovey was in her bag and to get it out for her.  We plastered smiles on our faces and continued waving bye and the doors closed and the bus drove away.

Ian and I walked inside and I heard him gasp.  There, on the floor was her lovey that we promised her would be with her on the bus.  She must have moved it from her bag before we left.  I started crying.  What a terrible mistake!

Fearing that she would be hysterical the entire 45 minute bus ride, I got ready and drove her lovey to school so that it would be waiting there for her.  Soon after I left, I got an email from her teacher letting me know that L had arrived and was happy!  What a relief!  Apparently, the tears had stopped by the time they were out of our neighborhood.  So grateful that she is doing well with this transition.

(Some photos while we waited for the bus)

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