The guilt.
One of the things I never anticipated with the arrival of the twins, was the tremendous guilt that you feel with a child with such complex special needs.
I'm not talking the run-of-the-mill, normal mom guilt we all experience when our kids watch too much tv or have dessert before dinner.
Special Needs parent-guilt is in a class by itself.
I know that Celia's progress, or lack thereof is primarily dependent on how much I reinforce what she has been taught in her hour of therapy.
That we are behind in her progress because of her first 26 months in China.
No pressure. HA!
I constantly feel guilty because we haven't done "ball time" 5 times each day.
Or that we have not yet made it to the 3 hours of recommended stander time. Not once have we made 3 one hour sessions.
Not once.
I feel the twinge just writing it...
GUILT.
Has she sat up enough today?
Did I hold her outward enough so she can strengthen her back?
Did I make her say enough new words?
Did I reinforce the ones she already knows but says infrequently?
Why didn't I make her use her fork at lunch?
Did she try to hold the sippy cup with me or did I rush through that too?
Did I give her sensory input?
Give her mental stimulation?
Did I forget to make her roll across the room, and back?
Did I pull her socks over her AFO's so her legs won't get chafed?
Why can't I make her therapy more fun?
Massage... I forgot to massage her arms and legs.
Is she holding her head up?
I lay awake at night and these are just a few of the thoughts that roll over and over in my head as I think back on my day.
And not once have I ever felt it was enough.
There is always more I could have done.
GUILT.
And when I am not with her, and I am enjoying the relative ease of having just the big girls, I feel guilty that I am liking the break.
Because I LOVE her, and I LOVE caring for her.
So why did I relish that break so much? Wouldn't she just love to have a break from her trapped little mind in an uncooperative body?
But she can't get a break and I can.
GUILT.
And don't get me started on the other 5 kids and the guilt I have over all of them getting much less of me while I lamely attempt to be ALL of Celia's therapists rolled into one 24/7.
Yes, I'll take a heaping load of extra GUILT for all of my other children and their various needs I may or may not have missed while frantically trying to get our 3-1 hour stander sessions squeezed in with our 5 therapy ball sessions and our fork and spoon feeding times in between homeschool, running back and forth to therapy and an occasional trip to the store so that we can eat.
It's easy to excuse it away and give the pat answer; "Don't feel guilty, you're doing the best you can."
Or.... "Let go, and let God."
Really?
Because a little girl's ability to sit, crawl, walk, stand, speak, and eat independently is largely dependent on ME and the time I invest into working with her.
And I'm pretty sure God signed me up for the task so one day I will answer to Him for the way I spent my days.
Because I have 5 other children with various emotional and physical needs not to mention a husband that would prefer not to get my leftovers, and a house that doesn't clean itself.
I wish it was that easy to just "to do the best I can" and all that lovely guilt melts away.
Of course I have made it a matter of much prayer.....
I pray fervently, that despite my shortcomings as a parent that God would make up the difference some how, some way in each one of my children.
But when it's all said and done, the burden really is on me.
And I always fall short.
I feel a tremendous amount of guilt for that.
I'm not talking the run-of-the-mill, normal mom guilt we all experience when our kids watch too much tv or have dessert before dinner.
Special Needs parent-guilt is in a class by itself.
I know that Celia's progress, or lack thereof is primarily dependent on how much I reinforce what she has been taught in her hour of therapy.
That we are behind in her progress because of her first 26 months in China.
No pressure. HA!
I constantly feel guilty because we haven't done "ball time" 5 times each day.
Or that we have not yet made it to the 3 hours of recommended stander time. Not once have we made 3 one hour sessions.
Not once.
I feel the twinge just writing it...
GUILT.
Has she sat up enough today?
Did I hold her outward enough so she can strengthen her back?
Did I make her say enough new words?
Did I reinforce the ones she already knows but says infrequently?
Why didn't I make her use her fork at lunch?
Did she try to hold the sippy cup with me or did I rush through that too?
Did I give her sensory input?
Give her mental stimulation?
Did I forget to make her roll across the room, and back?
Did I pull her socks over her AFO's so her legs won't get chafed?
Why can't I make her therapy more fun?
Massage... I forgot to massage her arms and legs.
Is she holding her head up?
I lay awake at night and these are just a few of the thoughts that roll over and over in my head as I think back on my day.
And not once have I ever felt it was enough.
There is always more I could have done.
GUILT.
And when I am not with her, and I am enjoying the relative ease of having just the big girls, I feel guilty that I am liking the break.
Because I LOVE her, and I LOVE caring for her.
So why did I relish that break so much? Wouldn't she just love to have a break from her trapped little mind in an uncooperative body?
But she can't get a break and I can.
GUILT.
And don't get me started on the other 5 kids and the guilt I have over all of them getting much less of me while I lamely attempt to be ALL of Celia's therapists rolled into one 24/7.
Yes, I'll take a heaping load of extra GUILT for all of my other children and their various needs I may or may not have missed while frantically trying to get our 3-1 hour stander sessions squeezed in with our 5 therapy ball sessions and our fork and spoon feeding times in between homeschool, running back and forth to therapy and an occasional trip to the store so that we can eat.
It's easy to excuse it away and give the pat answer; "Don't feel guilty, you're doing the best you can."
Or.... "Let go, and let God."
Really?
Because a little girl's ability to sit, crawl, walk, stand, speak, and eat independently is largely dependent on ME and the time I invest into working with her.
And I'm pretty sure God signed me up for the task so one day I will answer to Him for the way I spent my days.
Because I have 5 other children with various emotional and physical needs not to mention a husband that would prefer not to get my leftovers, and a house that doesn't clean itself.
I wish it was that easy to just "to do the best I can" and all that lovely guilt melts away.
Of course I have made it a matter of much prayer.....
I pray fervently, that despite my shortcomings as a parent that God would make up the difference some how, some way in each one of my children.
But when it's all said and done, the burden really is on me.
And I always fall short.
I feel a tremendous amount of guilt for that.
Christy, I understand where you are coming from. I am have been going through some of the same guilt feelings with Erin, especially when I learn about people hurting her and so forth. Erin needing more 1:1 then the other girls at times and I feel like I am neglecting the other girls and so forth. I keep having to tell myself not to look back, just take a day at a time and God didn't give us our wonderful children to us if he didn't think we couldn't handle them. Hugs my friend
ReplyDeletePlease do not burden yourself with that guilt. You dont' have time to feel guilty ;)
ReplyDeleteUltimately, as hard as you work, the person who determines how successful she will be is Celia. As parents we must do all that we can to give our kids the opportunities to succeed, but at the end of the day, they hold the cards.
Work hard but please don't forget to enjoy that precious little 2 year old. As much as she has missed out on the therapy she needs, she has missed out most on having a mama and that is your most important job.
Karla, mom of 3 special needs kiddos
(2 bio and 1 adopted from China)
Guilt is only healthy when we've done something wrong.
ReplyDeleteYou have not done anything wrong.
Relax. Those goals? ARE JUST THAT. GOALS. Work towards them, but don't think Celia will be scared for life if you don't meet them ahead of time. Remember the turtle? Slow and Steady wins the race.
Trust me, the therapists are probably in awe of all you DO accomplish.
Now, you have a lot to do in a day. Are you getting enough help with the things that don't have to be done by YOU?
And of course you feel like you fall short. We all do. That is why there is GRACE. Grace sufficient to cover all our weaknesses. Do your best, and God will provide the rest. God does not want us to continually put ourselves down or to constantly feel we aren't doing 'enough' - You must find a balance, and that will take TIME. You've only been in this particular situation for less than a year.
So here's my bossy advice. Make sure you are getting enough help with the unimportant things. Like the housework. Perhaps some relaxing of standards is in order.....
Do what you can do, and let the rest go without regret. There will come a season when someone else is taking the majority of your time, and then it will be another child's turn...
Keep both your sense of perspective and your sense of humor.
Take your vitamins, eat, and not too much coffee.
And don't try to be superwoman on the therapy front. TALK to the therapists and be honest - Look, I have 5 other kids, a husband, and myself to take care of. Ask for three things. One, the minimum. Two, the realistic medium, and three, the ideal. Then AIM for somewhere around the medium.(and allow some days for the minimum. Life happens.) As time goes on, and you learn how to juggle all this, increase it. It does NO ONE any good if you worry yourself into a nervous breakdown by thinking "I'm not doing enough!" God did not allow you to enter these 5 children's lives to worry yourself into a state of constant guilt and recrimination. If all God wanted was a therapist for C, or G, then he would have arranged that. He wanted a MOM first.
WOW. I sure am being bossy this morning :) Feel free to NOT publish this.
And also? Try to find a parent support group. You really need to know that there are others out there struggling with these same issues.
And I wish I lived nearby so I could provide some respite for you.
And the final thing? It is NATURAL and NORMAL to enjoy breaks away - Um, you enjoyed time away from all your kids when they were little. And Celia? Is still a toddler, and they are an awful lot of work and energy. Yes, she can't escape what we see as her limitations. But for her? that's her normal - she doesn't see that it is something to escape from. So no guilt allowed on that front. It doesn't accomplish anything except dim the light God is trying to renew in you.
He came that we might have Life and have it more abundantly. Not so that we could drown ourselves in guilt. No extra cookies for driving ourselves into martyrdom.
I love you, my friend and my sister, and know I am praying for you.
Go have a cup of tea and pretend I'm there :)
I'm praying for you! I'm not going to say I understand, because obviously I don't have kids so that would be crazy (and I HATE it when people tell me they understand when really they don't). :) But I do know that you are an amazing mommy to ALL of your kids! :) I love you!
ReplyDeleteBe gentle with yourself. Remember what a steep learning curve your new family brings.
ReplyDeleteAs for the feeding, being a parent to a child with a feeding disorder, one recommendation I've gotten is to make just one meal a day "therapeutic," and let the other meals and snacks be about caloric intake alone. Now, actually doing that and letting myself be okay with just doing that, are two entirely different things. I relate to your frustration, because I always want to do more too and feel inadequate often.
Wow! Your post speaks to me in so many ways- I have struggled to put those same thoughts into words and I also was very convicted. Abbys issues are obviously different from Celia's but I often lay in bed with the same guilt feelings. I worry that every treatment we miss is shortening her life or that I am teaching her that treatments are not as important as other things. Every time she gets sick I wonder if I could have changed the outcome by being more diligent etc. I was also very convicted when you reminded me that I will stand before God and be accountable as well. Very well written. I will lift you up in Prayer as I seek to serve Him more dilIgently.
ReplyDeleteLee Ann Knapp
I am lifting you up in prayer. I appreciate your honesty and openess here. You are an encouragement to others for sure.
ReplyDeleteI can't possibly add to all that has been said, but I do know your heart. I know that you are doing all you can (and more). Rest in His grace and know that He will will give you the strength you need. Don't forget that if you don't take care of YOU, you wont be able to take care of HER OR THE OTHER FIVE. Love always,
ReplyDeleteAll the things you've mentioned in your post are very valid. As I read it, I had a brainstorm. This might be possible and relieve your situation a little:
ReplyDeleteHow to make therapy more fun?
How to get it all done?
If you can, see if you can get volunteers from church, young and old, to come each day, or ever every other day, or whatever works for you, and set up a schedule with a specific task to work on.
When one family in my church had triplets, we all volunteered for the 9pm to 1am shift for a few months. It was very rewarding.
The teens can make it a lot more fun and the older ladies can do the more skilled stuff.
Of course, you have to think about how this effects attachment so have very clear instructions for everyone. Also, the instructions need to be clear that this isn't a social visit. It's arrive, get down to business, and leave.
Your feelings and normal and understandable, but, yes, I know you want the most therapy getting done. It's time to find a way.
I can understand your feeling of guilt also. I worry that our son's prognosis of amputating his arm will fall heavily on whether or not I complete enough physical therapy at home with him. If I had been more consistent, diligent,
ReplyDeleteaggressive, etc. is there a huge chance that he MIGHT gain more function?
I feel guilty, but can't seem to get it all worked in enough. I appreciate your honesty about this problem and have enjoyed the comments others have made.