Down Syndrome, An Anchor
This is my third year of being aware of Word Down Syndrome day since having a child who has Down syndrome. Ada is now a little over two years old.
I rarely was sad Ada's first year of life. If anything, I was concerned and felt overly protective. Ada had a hard time eating her first two months so I fretted about her not gaining enough weight or eating enough. The different emotions I had were hard. Feelings of doubt and fear that she wasn't nursing like I had hoped were hard but looking back I wouldn't have changed a thing with the way we chose to feed her. Waiting to find out if her heart was o.k. was nerve wracking and being that I'm an information junkie I read too much about Down syndrome and childhood Leukemia and most recently neck instability.
Ada's first year she stayed a peanut much longer, snuggled longer and took her time developing her gross motor skills. She was so light and cute that seriously, I didn't mind. I figure she is my last baby so why not enjoy it? The problem is I'm not a baby person. I love my kids but I like them better after they are two years old. I'm not a big fan of the whole feeding process and having to carry my children everywhere.
Now that Ada is two I have realized that physically she hasn't gotten past one year old. She isn't completely feeding herself, walking and isn't potty trained (Oh wait, none of my kids have been potty trained by two. Wishful thinking!) This has been weary as of late. I'm tired of therapies and my back hurts and I don't have the patience to sit and help her with a spoon each day. She's been rough on our sleep patterns and I pray to God she learns to sleep in some day! And, if she throws her sippy cup one more time off her high chair I may go insane.
One day I was telling my friend about how weary I am of the schedule we keep to help Ada develop. At the same time I appreciate how she keeps me grounded because I could be flying in a million different places and her schedule keeps me focused. My friend told this story about how her Mom was single and when she was six months old. Her Mom would cry out to The Lord asking why He would put her in this position. She had no idea how she could do it. She said, "why have you put this weight around my neck? I am drowning" and she felt God reply, "it is an anchor, to keep you grounded in and reliant on Me." I've clung to this thought that God has given me this child to keep me anchored.
Even those this second year has been tough, we wouldn't want to do life without her. She's a comfort to us all. She loves to pat you on the back if you are upset. She smiles and waves to strangers and she has a knack, not unlike her sisters, to make the bystander feel loved. A couple of weeks ago she was crying like crazy on the way to Trader Joe's. I began to wonder if I should even go in but I knew if I didn't I wouldn't have time to go back. We got inside and she insisted on hugging every worker. She would reach for them and they wouldn't know what to do so I would tell them she'd like a hug. She became all smiley and giddy and I'm pretty sure everyone felt all mushy inside.
Ada is definitley smart! She only says about 5 words but she signs so many more! She signs at least three books and can anticipate what is on the next page by signing what's next. She knows the actions to many songs and loves to bring her family their shoes to put on. She recently started standing in the middle of the room and thinks she's done the greatest trick ever! Her sisters love to count the seconds she can stand and cheer!
Ada has taught us to celebrate every moment. She has shown us not to take eating, drinking, standing and walking for granted. Its amazing to watch the progression of how we develop--that we wouldn't otherwise see because it typically happens so fast. She's anchored us to stay closer to home and helps us to slow down. Sometimes it feels heavy, but its exactly what we need.