… the love of a sister

There is a very faint beep in the background that I can hear. I have become oh so very familiar with it …. beep, beep, beep and then a pause.  Another set of 3 very faint beeps coming from somewhere in the house.  I push a button and know that in about 90 seconds I am going to hear it again and this process will be repeated 3 more times before finally everything goes silent.

My children have learned over the years that while their help with Elizabeth is not expected it is greatly appreciated at times. They have come to know when they are really needed and many times it is just the simple act of sitting with Elizabeth, holding her hand or reading her a story.  Her favorite show may need to be started over … it really is just little things that as a single mom those extra little hands have become very helpful to me.  I have had to remind myself that they themselves are just children and the care of Elizabeth does not lie on them.  However, I have been shown through the years that many times they help without being asked.  Now I will tell you that we have had our fair share of what I have come to know as “not me” moments.  These moments come when I have to ask questions such as …who is going to push Elizabeth’s chair in the grocery store or who can sit with Elizabeth so mom can take a shower.  I, of course must play referee as to who said it first and undoubtedly receive the you love her more than me title for at least the next 15 minutes!

I have spoken before to the relationship that Nathan and Elizabeth have. I don’t believe that I have ever seen a bond so strong between siblings before.  Nathan grew up wanting to sit with her and hold her and feed her.  I never had to question if I was making him do something he didn’t want to do.  I did worry that I was asking him to grow up too fast but I know that through those years a true sibling love developed.  There were times that I actually trusted Nathan more than a babysitter or nanny and there were times that Nathan would tell me he had it all under control and I could confidently know that he did.  Now that Nathan is off at college we rely on facetime for that time he and Elizabeth can spend together.  I have never seen a happier little girl than when she is talking to her older brother.

Alex, the king of “not me” which I know as he grows older will change. He loves her, just from more of a distance.  When he was younger he was much more into feeding her and holding her hand when she needed someone.  I know that he worries about her in his own way.  Not long ago we were at Target shopping and Alex whispered to me that people were staring at Elizabeth and he didn’t like that.  I explained to him that sometimes people don’t understand Elizabeth and that he should tell them about her.  Still a little shy and timid I have heard him say when someone stares, “she’s just my sister …” and then moves on.  I think in his mind that’s all he needs to say to explain who Elizabeth is.

The first time Caroline asked if she could give Elizabeth her medications I said no. I explained it was something not to play around with and she needed to be older.  Caroline, with determination in her voice told me she could do it.  With a very watchful eye I handed her they syringes filled with medicine and watched as she carefully placed each on in Elizabeth’s feeding tube.  She wasn’t even nervous and looked up with a smile that said, “see I told you I could …”  A few nights ago I set Elizabeth up for a feeding, which usually takes about an hour so I use that time to get the other 2 ready for bed, clean up the house or on a rare occasion and one of my favorite times I will sit beside Elizabeth and talk to her while she eats.  We used to feed Elizabeth manually with just a large syringe but have graduated to a feeding pump which has made life so much easier!  It’s not a hard task to feed her, you just have to make sure she doesn’t pull out the tubing while she’s eating, which by the way became a game for a little while.  And then you must make sure the mickey button does not come out as well.  This is a little more tedious as that it will warrant a trip to the ER for replacement.  The nurses are showing me how to change it out should that happen but I have not quite mastered that technique.  Okay honestly if one of my children scrapes their knee I fall out … you cannot tell that I come from a medical family!  Caroline and Alex know how to work the machine but I have not let them actually remove the tube from her button, of course Alex wouldn’t hear of it but I think Caroline would if I let her.  

I hear the faint 3 second beep and then Caroline continuing the feeds. A minute or so later I hear it again and know I am needed.  As I turn the corner of the kitchen I was able to capture this picture of Caroline.  There is something about this picture that takes me somewhere in the future where these girls are grown and Caroline is doing this very same thing.  The look on Caroline’s face is absolutely unforgettable to me.   I didn’t say a word, just stood back and watched as Caroline took each step with great thought and determination to do it right.  I held my breath when she began to pull the tube from the button and without a single question in her mind she did just fine.

In the midst of the divorce one of my greatest fears was failing Elizabeth. Raising 4 kids by yourself is not easy and I was so afraid that I would not measure up to the task given before me.  God has worked with my children so that they have an understanding of what help I need.  You can see that work in Caroline through this picture. I have often heard over the years that God chooses very carefully who will be parents of a special needs child but in that search He also considers very carefully the brothers and sisters of that child as well.

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