Two Steps Forward....

Today, I reminded myself that sometimes, it is okay to take a step back.  I love going to GiGi's...and the moms that go there have become my community and safe place.  But at the same time, it is really hard to be there and see faces sometimes barely masking the pain and exhaustion this journey sometimes induces.  It makes me wonder how often someone catches it flash across my face.  For me, as anyone who knows me could guess, when I am surrounded by beautiful babies, life is good.  It is the teenage and adult world of Down Syndrome that terrifies me.  And it is the scary health issues that threaten our kids that wear on us all.  Our group has learned that too well recently, and the way we have supported one another makes me so proud and comforted!

I held Parker tonight, and he was giggling, happy, and his usual spunky, adorable self and just cried.  I cried for the unfairness of Down Syndrome for him, and all of his friends.  How they deserve lives full of health and experiences that I deem to be great (marriage, kids, homes, family, etc.).  I looked at the house we are buying...and thought of how great the kitchenette in the basement is...but wished that there was a bathroom...in case Parker wants to live there when he is older.  No one should have to think of that when they buy their first house.  I don't want that for him.  I want so much more for his life.

And yet, as I type this....I can count all of the "me's" and "I's" that are glaring in front of me...like flashing neon signs.  On one hand, I shame myself for the selfishness of these thoughts....and almost don't want to post them on here.  They are embarrassing, and really make me feel vulnerable.  On the other hand...I will press the little orange publish button to remind myself that it is okay to FEEL on this journey.  And also that this process of accepting, grieving, persevering, persisting, and soaring will never be finished...it will always be evolving, will always be emotional...and probably a bit selfish at times.

I just pray (with a whole lot of begging) that Parker is HAPPY in this life, even if his happy presents differently than mine.  And I hope desperately that Matt and I can find peace in that, and leave him with support and a community of his own.

Your heart truly lives outside of you when you have a baby.  I think my heart is just going through a little bit of weathering before it can really survive on its own out there.  Good thing I have a sweet, chunky baby to help me along the way!