its easy to feel alone in all of this....its easy to think why my baby....its also easy to get mad,sad, and want to scream and be selfish and say haven't i had enough????. But, really what is enough? how can we think enough is enough. tonight i was researching zekes stuff....it always makes me sad to see all the pics of the boys and girls that have the SAME thing as Z. so clearly by looking at the pics i should be aware that we are not alone. and also by all the friends and family that are lining up to hold us during all of this are even more proof that we are not alone. but it stills feel pretty hard doing this. it still feels overwhelming looking at travel dates and expecting new dates. i try not to get ahead of myself in all of this but sometimes i feel like the toy in the bathtub circling the drain....round and round and round.
but, this week i had a reality check. in my 3 days of work i saw 4 mommies with profound baby issues...amazing. one mommies baby has had almost as many surgeries as i have fingers...and very soon will have more surgeries than i have fingers to count on...he eats by a feeding tube and his body just doesn't give him any breaks. yet, she never ever complains and ALWAYS smiles and even giggles about her boy and his spunkyness..another mommy has a beautiful little girl that just came to early...and life has just challenged them at every crossing...her baby will always need her help..yet, she is brave and searches out the Best treatments for her angel...she also never complains. my buddy who comes from way across the state just to see me has a baby just like Z....she takes pictures every moment of her sweet patient baby girl..she dresses her in all the frilly girl stuff a mom can find..and if you cross her about her baby ..watch it. seriously watch it! then there is the grandma raising not only one but two autistic grand babies...with very very very little finances...He does the best EVERY day for her grands...and wouldn't change them for a minute..she says" they are who they are..and who says that's not what normal is." and for my beautiful friend who can no longer hold her baby ...only in her dreams does she still smell her..hear her giggle..and touch her I'm sorry for being selfish in my grief for normalcy...my pain will never compare to the ache you feel every moment of the day...I'm truly sorry...
one of the hardest parts in this has been people saying its just "cosmetic" BULL CRAP. sorry. really??? did you not go to school? did you not see how mean kids are...even if you just wore the wrong style of shoe...imagine a kid who talks a little off...who can shoot milk out there nose at the lunch table..a kid who may not have any teeth...a big scare that for some reason that just didn't heal right...or may even have to wear hearing aids because the cleft affects that. so please whatever you do don't tell me its cosmetic...oh...by the way there are cleft babies that have many genetic disorders as well...that cause a whole gamut of hardships..so please dint say cosmetic around me...
maybe in all of this i will start the cleft pallet group that my family needed ..one that will help families and kids like us . to give us a group of people just like us. a group that is not sponsored by a plastic surgeon...looking for a dime. maybe in all of this we will find a way to help other families.
we have been blessed to have MANY MANY people realise what a financial strain this is...how 2 people with no vacation or sick pay take off multiple times a year...buy, bottles that are $80.00 for only 2 bottles. these friends are filling the gaps and carrying us..praying for us and loving Zeke and our big boys. what about the other families that are out there doing this alone.. it breaks my heart.
i don't have a neat and tidy way to end this post...most days i know we will be ok. most days I'm very strong. and for the most part we are resilient. and keep on swimming just like DORY...but just for tonight I'm sad.mad and a little overwhelmed.but, greatful to have my perfectly imperfect little boy..
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