A letter to my daughter (and all super Special Needs Siblings)

Dear Anna (and all other super special needs siblings!):

I’m sorry that holidays aren’t the fun and magical days that I had as a kid, and that I always imagined for you.

I’m sorry we don’t decorate:

I had so much fun decorating the house with my mom…But in this house – if it’s not Christmas– I don’t have the time or energy to decorate.  The decorations around Christmas add to the anxiety for your brother – but it’s also part of the routine and he counts down the days until we decorate.  So for other holidays, I think I intentionally avoid decorating since I don’t want to create more routines and more anxiety.

I’m sorry we don’t have unique outings or traditions:

It seems our tradition is boiling up a batch of hard boiled eggs to make you sit there for 8 minutes and pose for yet another picture without your brother because he had no interest to join in this year.  Wish we could be one of those families who travels to some relaxing beach resort on annual spring break trips – but that isn’t possible for our family.   So much stress that goes along with traveling….and it’s just too overwhelming for me to even think about doing that every year!  <— although I know we have to keep trying and exposing him to new places and experiences.  

 

 

I’m sorry we make you celebrate in the middle of the night:

At least he made it until 4:30am for the morning egg hunt – better than the 2:00am Christmas morning wake up call!  I know it makes me and Daddy cranky for most of the day.   It just gets overwhelming.   But you are always such a trooper and suck it up for that day because you know in the big scheme of things it’s not a big deal.  On the bright side, we get to see a lot of sunrises in this house.  Somehow they fill my soul in ways that tell me everything is going to be ok!

I’m sorry we didn’t make it to church….again:

I miss that tradition the most – spending that hour with you.  It makes me sad that we have never been able to do this as a family- since some of my most special memories growing up involved our whole family filling an entire church pew- so I savor that hour I get to spend with you at church – but with another perfectly timed meltdown, it wasn’t meant to be.

 

I’m sorry for all the family photo op’s we never have:

It’s so rare to have our family of 4 in a picture together.  And when we do – one of us probably is miserable about it! ha hah  But I will keep trying for this one — even if it’s just 4 seconds captured in time….. whether it’s happy or sad, it’s a memory of our family to cherish.

 

 

yet….

I’m so thankful for your help:

You know how stressful it is for us to sneak around and try to get ready for the Easter bunny on the evening before the holiday- and so you offered to help fill eggs for the morning hunt.  You did a much better job than we would have!  You have no idea how helpful it was to Daddy and I for you to fill the 75 eggs. 

 

I’m so blessed by how you roll with it:

Even though you know there is stress and difficult emotions all around you, somehow you manage to smile, be funny and be that person who can pull us through the tough, mucky stuff.   God knew I was going to need an angel on earth to help me through this life, and I’m so blessed he gave me you.

I’m so grateful for our amazing, loving family:

On special holidays, that usually end up being challenging for your brother, we are always surrounded by family that “gets it”…. they don’t judge your brother or our crazy life- they only love.   They don’t run away, they run toward us with open arms to help in SO many ways. And most of all, they are there for you too.  To listen, laugh and love…..every single one of us.

I’m so proud of the endless love you have for your brother:

No matter how many times he yells “leave me alone”…. you never give up.  I can learn so much from you.   It’s hard many days when I feel it’s impossible to ‘connect’ with your brother, to not give up.   It’s easier to not care.  It’s easier to pretend it doesn’t bother me – or that I don’t want and need that connection.   I can see you want and need it too.  And it always pays off in the end when I hear those giggles you get out of him like no one else can!   Those moments are the memories I want to remember forever!

I love you so much and will hope and pray that you can remember more of the happy, fun moments and less of the sad, stressful days.  I know we are giving you a good life.  I try often to make sure we have special one on one time to spoil you with all our attention.   I pray every night that someday you will marry someone who has a million siblings so that you can experience a different kind of crazy!  But mostly, I pray that someday when you have a family of your own and you look back on your own childhood——-you will smile.

Love, Mom