Day 2
Sissy Sleep Over
Just a few nights ago I lived out a scenario I have pictured in my mind for many of these past 10 years.... The dreaded "sleep over". Now I am not talking about me aggreeing to host many crazy girls for a sleep over. I am talking about Miss Al being INVITED to a sleepover. This was at the home a friend that she has not spent much time around. It appeared to be a fun, girly sleepover with friends (minimal sleep expected). I agreed that she could go but would not be allowed to stay overnight. While met with sadness she understood and was just happy she could go.
REALITY!
The truth is, it STINKS to be different and have LCHAD. Most of the time Alex is very normal. She acts like her friends. Alex still needs to be fed a "midnight snack" EVERY NIGHT. This is not something you lightly pass along to someone else. It isn't hard, but it does require a commitment. Alex was NOT going to get to stay the night.
We "negotiated" a pick up time. It was quite late in the 10 year old world. Her big sister questioned me that evening about why I let her stay so late. I explained that it was hard enough that should wouldn't be allowed to stay all night just because she is Alex (and because she has LCHAD). The normally "stay out of it" sister had a look of compassion that I rarely see on her face. I think she realized that at 10, she had been allowed to sleep over at people's homes. The "unfair" took on a new face... her sister.
In true Alex "style" she even called and asked to be able to stay. I remained firm and compassionate. I picked her up. She was frustrated and mad. I allowed her to "vent" in the car on the way home. Alex has been frustrated enough to quite talking to me (ahhh, the silent treatment). When she arrived at home her BIG sister came to the rescue. Claire had set up a "Sissy Sleepover" in Alex's room.
While life will never truly be "fair" and growing up with LCHAD (and parenting it too) will offer many more challenges.... this everyday kind of moment where the big sister steps in of her own doing and "saves the day" by reaching out in a way only she could will forever be in my heart as one I hope I never forget. They truly do love one another. The treat each other quite normally. However, the truth is our family will never quite be "normal" because of the sweet, spunky girl with LCHAD.
We have grown so much over the past 10 years. I always KNEW Claire need Alex in her life to make her perfect little world a little more messy, colorful, loud and fun. I sometime miss just how much Alex needs Claire in her life. God truly did know what He was doing when He made them sisters.
Tuesday, October 2, 2012
Monday, October 1, 2012
For ten years I have been the mother of two girls. When my youngest entered the world my world completely changed.... and yet, it didn't. My youngest daughter has an inherited metabolic disorder. I have learned so much over the last ten years. I have found joy in unexpected ways. I am stronger. I am weaker. I am blessed.
For the next 31 days I am going to write about days, thoughts, ideas and fun that I have experienced as their mother. Some are just FUN. Some are memorable. Some may even be sad.
Welcome to the opening of this part of my heart.
Day 1
Sparkly Sunglasses
I don't remember exactly when it was I got the sunglasses. I do know where. I think this was during the winter or early spring when Alex was about a year and a half old and we were in and out of the hospital a LOT! There they were, pink sparkly sunglasses. I always wear sunglasses. I never pay more than $10 for them because they break or get lost. I think I must have had a gift card. Somehow I justified my purchase (I think they were about $30, nothing too extravagant). They made me SMILE! They made me feel "happy". I HAD to have them.
During those days I remember grasping for anything that seemed "normal" or "fun" just to help me keep moving as though everything would be alright. Also I was drawn to anything pink (always thinking of my girls). They were so sparkly and I wore them EVERYWHERE. When indoors they were on my head like a headband. I got so many compliments on those sunglasses. The truth is, they made me smile. The pink sparkles helped me hold on to the fun "life" of having two little girls. Often I found myself fighting that sinking feeling that I would not be strong enough to handle all that was before me. I didn't have to prove anything to anyone. I had to prove a LOT to my self. The everydayness of those glasses kept giving me something that would make me smile.
I remember when the first jewel started to come loose and I realized that I would have to replace those glasses. I was sad. They seemed to be able to help me smile a little more. Eventually my practical mind took hold and I replaced them. Many sunglasses have followed, but I do know that in the recess of a drawer I still have my pink sparkly sunglasses.
I saw an old photo of me wearing those just the other day. The sunglases made me smile. It made me realize how sometimes it is little insignificant things often turn out to be symbols of important times in our lives. These sunglasses are a reminder to smile THROUGH the difficult times. They remind me that God's little sparkly gifts are more amazing the older they get. God has blessed me with two beautiful and amazing girls. They make me smile. I think they are the sparkly pink things that shine right through me every day.
For the next 31 days I am going to write about days, thoughts, ideas and fun that I have experienced as their mother. Some are just FUN. Some are memorable. Some may even be sad.
Welcome to the opening of this part of my heart.
Day 1
Sparkly Sunglasses
I don't remember exactly when it was I got the sunglasses. I do know where. I think this was during the winter or early spring when Alex was about a year and a half old and we were in and out of the hospital a LOT! There they were, pink sparkly sunglasses. I always wear sunglasses. I never pay more than $10 for them because they break or get lost. I think I must have had a gift card. Somehow I justified my purchase (I think they were about $30, nothing too extravagant). They made me SMILE! They made me feel "happy". I HAD to have them.
During those days I remember grasping for anything that seemed "normal" or "fun" just to help me keep moving as though everything would be alright. Also I was drawn to anything pink (always thinking of my girls). They were so sparkly and I wore them EVERYWHERE. When indoors they were on my head like a headband. I got so many compliments on those sunglasses. The truth is, they made me smile. The pink sparkles helped me hold on to the fun "life" of having two little girls. Often I found myself fighting that sinking feeling that I would not be strong enough to handle all that was before me. I didn't have to prove anything to anyone. I had to prove a LOT to my self. The everydayness of those glasses kept giving me something that would make me smile.
I remember when the first jewel started to come loose and I realized that I would have to replace those glasses. I was sad. They seemed to be able to help me smile a little more. Eventually my practical mind took hold and I replaced them. Many sunglasses have followed, but I do know that in the recess of a drawer I still have my pink sparkly sunglasses.
I saw an old photo of me wearing those just the other day. The sunglases made me smile. It made me realize how sometimes it is little insignificant things often turn out to be symbols of important times in our lives. These sunglasses are a reminder to smile THROUGH the difficult times. They remind me that God's little sparkly gifts are more amazing the older they get. God has blessed me with two beautiful and amazing girls. They make me smile. I think they are the sparkly pink things that shine right through me every day.
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