Sunday, August 12, 2012

Being okay with me spending time with her on one...too!

Today's gift is that my daughter is okay with me spending one on one time with her siblings......and I....years later.....know that it is okay for me to have this one on one time with them too.

Before my daughter was diagnosed with Rett Syndrome, I had everything laid out in my head as to things I wanted to do with my family--my family as a whole unit, just me and my daughters or just me and my son.  Then Rett Syndrome was thrown into the mix and things changed.

How were we going to travel and see the world together now?  Would I still be able to take mother/daughter weekends with both of my girls together and do the same things we would be doing if Rett Syndrome wasn't a part of our lives?  Can I take each girl on their own weekend away to a place that is special to them without feeling guilty that my other daughter isn't with us too?   I remember these feelings like they were just yesterday....probably because I think these things too often.

For years I struggled with the last question above....can I take each girl on their own weekend away.....without feeling guilty that my other daughter isn't with us too....but after three years from my daughter's diagnosis I realized I had to let go of this feeling of guilt.  I had to let it go for the sake of my other children and I could not not do things with them or let them not do things because of their sister.  When I was finally okay with not feeling guilty anymore, my husband and I promised each other that every year (this was in 2009) we would take individual trips with the kids to give them the one on one attention they not only need, but deserve.  I would take a mother/daughter trip with my other daughter; we would both take my daughter with Rett Syndrome away on a trip; and my husband would take my son away on a boys weekend (he gets to go on his first trip when he turns 5 and that is this year!).  This way we are giving each of our children the one on one attention from us and we can cater the trip all around that one child.

There is one place that I could never go (this is me personally) and not have the whole family be with us if it is a family trip.....and that is Walt Disney World!  There is something so magical about Disney that I would not want any of my children to miss out on the fun.  However, I did question if my daughter with Rett Syndrome truly enjoyed herself this year.  I know what she loves about Disney...and we could do that in one day....but what about the rest of the days.  This year was the first year that a part of me felt like she could have be okay doing just one day at the parks and would not have been upset if we went without her.  And to be honest, she would be happy as a could be back at the house or hotel swimming all day long...she just loves to swim!  As long as their is a her mind...she is having the most fun no matter what we are doing.  It is what she truly enjoys....why deprive her of what I know she enjoys.

I often think about other trips I would love to take the kids on and then wonder will/if my daughter will fit into these trips.  And I do struggle with it ( I will always struggle with it, even though I will not feel guilty)...every time I think about it....for two reasons....I don't know if she would truly enjoy the sightseeing and the in and out and in and out of all the places we would be visiting....and it is a ton of transitioning (which we are not always that good with)....and the second reason is... if I don't think the trip is good for her, that doesn't mean my other two children can't experience it.

I honestly think this is one of the hardest parts of having a child with special differences in our family.  There are so many "what ifs" about traveling....that could turn situations into disasters.  Flying for example,  if my daughter decided to have a "behavior" on the plane, we would be one of the family's that you hear about on the news who got kicked off the plane for "having a child with a horrible temper tantrum that we couldn't control"...that is what they would say, not knowing anything about my daughter and our situation. And we have no idea when the Rett monster wants to rear its ugly head, otherwise traveling would be very easy if we could plan around them, but we can't.  Let's not even talk about if we were on a plane that was sitting on the tarmac for hours, but no one could get off.....and you have no control over situations like these!!!!

So with all this, I had to let go (as hard as it was and sometimes still is) of feeling guilty if I/we wanted to do something with our other children, as it is only fair to them.  And I only let go of this feeling of guilt, because we take our daughter with special differences away to places we know she would love and have a good she is having weekends away too!  These weekends away with our children for one on one time is so special to all of us.

Today I am writing about this gift, because I took my middle daughter to see Cirque de Soleil and we had a mother/daughter date.  Of course, when we were there I thought about my other two children at home and wondered if they would have enjoyed it and even asked my daughter if she thought it would have been okay for her sister.  She said, "I think she would have thought is was really loud in here, because I think it is a little too loud for me."  Her response made me realize I am making the right decisions.  While I dream of the day when we can do everything together, we will just do what we know we can and enjoy those moments to the fullest.

Here are two quotes for today....

There are two ways of meeting difficulties; you alter the difficulties or you alter the way you meet them- Phyllis Bottome

I know God will not give me anything I can't handle.  I just wish he didn't trust me so much- Mother Theresa 

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