I remember very clearly, at the Down syndrome Conference back in March, one of the speakers - who is the manager of the Down syndrome Program at Children's Hospital - talked about how the majority of the phone calls she receives from discouraged and distraught mothers of kids with Down syndrome, is when their children are in the 14-18 month age range. For that is the time, she said, when their delays become more obvious and when the reality begins to set in.
Indeed.
Lately I have been feeling it. Discouraged. Overwhelmed. Thoroughly confused. Unfocused. And pressured. Ah the pressure. Darned if I know where that's coming from (although my guess would be, ME!), or why it's constantly nagging at me. But lately I've been feeling this urgency for Dylan to learn things. He is over 14 months now. C'mon! Why does he still spit up 100 times a day? Why won't he eat real food? Or drink? Or crawl? Or talk? Yes, yes, I know that "he will learn things on his own time". I know that he will, I do. And most of the time I am fine with that, really. It's just that every now and then it's...hard. Everything is just very very freaking hard. It's overwhelming, it's scary, it's discouraging and it's just. plain. hard.
And you know what? I think the reason why I have been feeling like this, is that I've begun, little by little, to lose my focus. To lose my patience. I've started to lose sight of Dylan. Lose sight of the big picture. The worry and fear about milestones and time frames has begun to consume me and I've been left with very little energy for much else...
It is times like these, that I need to stop. Just stop. I need to sit back, breathe, and I need to regroup. I need to look at this boy and refocus on what really, truly matters in this life, because he sure as heck isn't wasting his time being consumed by worry.
I need to remind myself to love first. Be happy. And stay in the moment.
13 comments:
xo I hope you feel better soon.
I have been doing this for the past 6 months and I highly recommend it. All you need to do is look at Dylan's amazing face and the worry will melt away. He is just right and perfect in the moment. Enjoy your baby. He is pure love.
We are all riding the same roller coaster. You aren't alone. Hang on!!! It will get better.
Just when you feel you can't take it anymore, he will surprise you with a new milestone. I promise!
Thank you so much for you post. I have been feeling the same way. Sam is now 13 months and we have a little boy 3 houses down who is only 11 months. I see him at church and he is crawling everywhere, holding onto chairs and walking along them as Sam sits in my lap and sometimes sits on the floor with my legs around him in case he loses his balance. It can be very frustrating some Sunday's sitting in church watching it, even harder because I adore him and his Mother. I get angry inside sometimes and then sad but your right, we need to focus on them and how much we love them. The delays are becoming more evident so I guess like my old boss used to say, put on your iron underware. :-)
It is ok to feel like this Laurie. But you know what you need to do, you said it yourself. Dylan will guide you through this, I am not saying it will be easy. Like I said before when you start to get discouraged, Dylan has a way of getting your spirits up and showing you he can and will do it, in his own time.
Love you
I seem to remember a simaliar post awhile back,when you were frustrsted that Dylan wasn't sitting by himself yet. And very soon thereafter,he sat by himself. So maybe this is just one of those times that he is about to amze you one more time.
We sure can learn so much from these little guys, can't we? Probably the most important lessons we will ever learn.
I remember feeling like this for a long time too. Waiting for Morgan to crawl on all four, walk, and talk. It is easy to get discouraged when everyone you meet asks, "Is she walking yet?" And you have to say over and over for almost 2 years, "Not yet, but she's getting close!"
One thing that helped me was to remember Morgan was not in a race. She was having her own experience and as long as she was happy in her journey that was all that mattered. It's so easy to get caught up in the comparisons (my biggest problem was comparing her to other kids with Ds and being disappointed if she wasn't doing as much as they were) and lose focus of our child.
Each achievement comes with an incredible celebration! It makes it better than reaching the milestone without all the challenges. I promise. And I promise you that all the things you are worrying about right now--he'll do all those things and you won't even remember being frustrated about it. I thought Morgan would never be potty-trained and now I have to remind myself that I would have been amazed a year ago if someone would have told me she would be potty trained and doing so well right now.
Big hugs!
You talked yourself through it~!
Hopefully these feelings pass quickly. I think every one of us has felt the same things at one point or another. For what it's worth, I think 14-18 months is a tough point with typical children, too. It is when constant supervision, and constant motion/stuff to do is at its high point...and our energy has been zapped for long enough to really feel it. Parenting a child who is delayed is tough for many of the same reasons plus the worry about milestones and the associated guilt ("Am I doing enough?").
Rest assured, you are doing a great job and Dylan is doing so well, too (and he is just the most adorable little guy!).
I had these same feelings when Bridget was about a year and a half. I realized that Bridget did not know or care what she was "supposed" to be doing, and she was happy being herself. And even though there were lots of things I wished she was doing...she did not seem to mind. Jen is right, looking at her...really LOOKING at her and sinking into that moment...is what it took to straighten myself out.
It gets better...
I remembered a post I read which seems appropriate to link to here:
http://bloom-parentingkidswithdisabilities.blogspot.com/2009/08/what-makes-night-beautiful.html
You've had so many great comments already, but just wanted to say hang in there. Dylan is such a beautiful boy and I've felt what you're feeling, too. John Michael is almost 22 months old and his little (typical) friend who is 4 months younger is running, learning new words, independent, etc. It used to bother me a little, but when we just focus on what our guys are doing and not so much what they're not doing, we can be amazed at their victories. It could be that Dylan is ramping up for a major milestone and sometimes it seems like growth and development are stagant for a little while and then... watch out. He'll surprise you if you let him. :-)
You have to go and do somthing for yourself that you will enjoy.Get out and look at all that is around you and all the love you have and get from others.You are a special women and you will do just fine.
God Bless
I feel ya! When I get in a funk I usually know that I am getting burned out from all of the things we have to do daily. Maybe if you get a break for yourself..you will feel better. Take a bath. Buy yourself a new book or some flowers or just do something non therapy related. You are worth it and are working hard! Yes it can be overwhelming with all the appointments and goals to reach. Dylan is lucky to have such a dedicated mom. Hang in there...we are here with you doing the same things and feeling the same way sometimes. He will get everything in his own time.
Oh My, can he get any cuter!! He is starting to look like such a little boy.
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