We attend parties and senior nights, and pat the backs of moms who worry if their kids will only eat Ramen now.
I was at a party for a graduating senior when the mother of the senior gave a little speech. She spoke all about her child's accomplishments, how proud she was, and then "I just wish I could keep you little forever!"
I knew what she meant. I knew that she misses that daughter's sweet innocent childhood, and playing games of Monopoly and eating popsicles together on those carefree afternoons. Of the sticky hands and sloppy kisses and constant "I love you, Mommy you are the best"s.
And I am sure I will think the exact same thing when my son gets older and prepares to go out on his own.
But OUCH that sentence hurt.
Because my child will be little forever.
She will always believe in Santa Claus. She will always want to help cook but make more mess than food.
She will always need constant supervision and care.
She will always want that bedtime story, and need her hand held in the parking lot.
She will always want to play Barbies and do puzzles on the floor.
And you know what? I don't wish that I could keep my child little forever.
I wanted her to grow up, to graduate high school then college, get married and have kids, drive, travel, have a job and hobbies.
I wanted to be able to ask her about her day and get an understandable answer back.
I wanted to have her call me from college and hear about how she used dish soap in the dishwasher instead of detergent and filled the kitchen with bubbles, and laugh about it together.
That was what I had imagined. That is not the future God has in store for Chelsea, but that is okay! Because really, I am the lucky one!
I don't ever have to worry about Chelsea sneaking out of the house to see boys, or stress about is she is being a safe driver.
I will always have a built-in ice cream buddy who loves being with me and likes books and going to the zoo! We will get to host stuffed animal tea parties while other moms wonder when their kids will ever call.
The magic of Christmas will never fade over time.
I will always have a child who is little. And even though it hurts more than I can describe sometimes, it is okay. Better than okay. I love my life and feel blessed to have Chelsea in it!
I know that when my son's time comes to leave the nest, I will sob and wish for those days back when he was little, because they really are sweet and I LOVE these days!
I sometimes wish my daughters could grow up the way they are "supposed" to, and like it says in Welcome to Holland (below), the pain of that never, ever goes away. But life with them is beautiful, and I always get to keep that with me.
Welcome to Holland
By: Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...…
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
My little baby is 16 months old and he was diagnosed with SATB2 when he was 10 months old. I have been reading your blog since last night, there is not much information about this syndrome or how we can help our children. my son still does not speak, does not sit down and does not roll with his back to his belly. I would like to know if the fish oil that you show in the picture is the one that you give to your daughters, and how much is the dose that I can give to my son. I will continue reading your blog. Thank you
ReplyDeleteHi Brendafc,
DeleteYes, this is still a very new syndrome with not many kids! Are you on facebook? We have an amazing, active group of parents who are a treasure trove of information.
And yes, I give both my daughters the Nordic Naturals ProEFA 3-6-9 fish oil. 2 capsules a day each. I started my younger daughter on them at 5 months old, and I think it really helped in conjunction with all the therapy!
Good luck!