Thursday, October 9, 2008

I worry

. . . about the future. About Finn's future. About how it will be when we no longer have the "safety net" of him being an infant. And it is a safety net, you know. As long as he's an infant, he's just an infant, and not much is expected of him. He eats. He pees. He poops. He sleeps. He cries. That's what all babies do. So the "safety net" is the fact that it's easy to pretend, for the time being, that he's just like anyone else's baby . . . that he's just like my other babies who came before him. Tricia of Unringing the Bell and I touched on this in an email exchange recently . . . how the first year (aside from any medical issues) is relatively easy because you're not faced with too many developmental delays. The second year, apparently, is harder. That's when it will start to become apparent how delayed he is.

Sometimes I troll blogs of parents with older kids with DS, and the window into the future that they provide scares me and, frankly, depresses me. Two year olds not yet walking. Five and six year olds - and older even - who are not yet potty trained. Three year olds who don't speak.

Sometimes I really, really worry about my own capacity to deal with all of this. Will I find within myself the patience, perseverence, and compassion that will be required to nurture, encourage, and motivate Finn? Sometimes I have a lot of doubts about that.

I know that all I can do is take it a day at a time. I know that trying to predict the future - and certainly worrying over it - is completely pointless. I know that Finn's potential is a complete unknown and that he may do very well developmentally . . . or he may not. I know that we will just have to roll with the punches as they are delivered, and that we will have to remember to be grateful for baby steps in all areas.

But still, I worry.


datri said...

Well, you wouldn't be human if you didn't worry about the future. My DH actually wants nothing to do with the whole "disability support" world because he doesn't want any expectations, high or low, about his child.

Developmentally, Kayla is "atypically delayed". How do we deal with it? We just do. And some days it really sucks. But life goes on and you just deal with it because you love your child.

Laurie said...

Oh my gosh, Lisa!! I just had the SAME exact conversation (and slightly touched on this on my blog post today as well) with Dylan's nurse today.
I completely understand what you are saying.
((Big hugs))

Cleo said...

We all come to this world with unique/different journeys. Those parents and their older children with T21 are on their own journey. I think that giving/receiving support and honoring each other journeys can be very helpful. Finn, your family and you are on your own journey, have faith that your inner wisdom will guide and help you overcome whatever challenge you may encounter Lisa. The mind is always in movement, traveling to the past (regrets) and the future (worries), it is your job to let go of all the thoughts that are not constructive and bring yourself to the present. Focus in all the good, spend more time and energy thinking about productive ways to help Finn in his development and most important continue to work with him on a daily basis, helping him to reach his potential one moment at a time.

Tricia said...

Please know that there is no prescription for when/if delays present themselves. Finnian may be walking much earlier than others--I do know of several kids who are walking at bout 15 months or so. I hope I didn't stress you out too much. We all worry. I know we all do. But I really do believe that you will grow with your child to accept whatever/whenever he is able to do various tasks. You will guide each other.

Varsha said...

I read your blog everyday...but haven't actually posted a comment until now :) The feelings you are having are perfectly normal...I had them when Alisha was diagnosed and I still have them...I don't think they will ever go away.

I promise you will find the patience and perseverence to help Finn so that he can thrive and develop. In the meantime, enjoy him as a baby (aside from the crying and poop, of course!) And when he starts reaching milestones (or "inchstones" as I call them with Alisha), don't focus on how old he was when he reached those milestones...just celebrate the fact that he's making progress.

Tara Marie said...

Lisa, worrying is a part of the job of parenting. I know I have different worries for each of my children [just as you do with yours] and that taking one day at a time, with preparing for the future is the best we can do.

Each child is unique, and I know that as the days, months and years move forward, Finnian will blossom exactly into who he is destined to be, and you as his Mother will blossom with him.

Recently, my thoughts have been on making sure that I prepare the best I can for Emma Sage's future. Sometimes thoughts like that are difficult, and other times they are very exciting, but I truly believe her future is as wide open and bright as she makes it to be.

Peace and love, Tara Marie

Jen said...

My son is two, and without trying to sound like I'm bragging, is really doing great. He walked at 20 months, he has more words than I can count, and his speech therapist says he doesn't really show delays in speech; he's in the "low average" range for typical kids his age. So, in theory, I shouldn't worry, but oh, I do. It consumes me sometimes.

And sometimes I get lost in the day-to-day that is our life, and I forget, for a second, that he has delays at all. But then we'll get put in a situation where the delays are there, they're obvious, and I compare him to other kids his age, to his brothers, to the world. And I worry all over again.

I am still waiting to get to the place where I won't think about the DS. Where my son is who he is, and not a diagnosis. I'm not quite there yet.

Taking it step-by-step is really the best advice. It's hard to slow down to do it sometimes. I think we'll always worry, just like we do about our other children. It's just worrying about different things.