I left my boys in Hilton Head and returned to Sophie and The Husband -- and the human weather -- in Los Angeles. This is only the second time I've refused to schlep with Sophie to the east coast, but it's difficult on nearly every level. We yearn to be a family like everyone else in my extended family -- a family that can pick up with relative ease and just go. Oliver cried when we left The Husband and Sophie last week, and he cried, again, when I left on Sunday to return to them. Why can't we all be together like everyone else? he said. My parents are disappointed that I didn't do so this year, as we celebrated their fiftieth wedding anniversary and took another family photo (into which The Husband and Sophie will be photo-shopped), but I just couldn't do it. Everyone knows the sacrifices and modifications families with disabled children must face, but this might be a silent one -- doing what is practical in the face of a nearly existential sorrow, acknowledging what is fact and accepting what will never be.
The boys are busy with their cousins, the beach, alligators and bicycles. The Husband is working so that we can all live as we do. Sophie is at Communicamp each day this week, which I'll post about later, and I am at home, sitting in the silence, both grateful for it and longing for its opposite.
Oliver's question tears at my heart. But practical realities -- well, some things just can't be done.
ReplyDeleteYou won't have this quiet for long -- maybe knowing it is fleeting will help you savor it. xo
I think about 2/3 of the sacrifices and modifications are silent ones...
ReplyDeleteSuch simple things that I take for granted. Thanks for the reminder.
ReplyDeleteI think it's positive that you and your boys went. I'm impressed with your willingness to compromise and give your boys memories that will last a lifetime....even if, they aren't the ones you wish you could give. You are an amazing mother. Don't forget it.
ReplyDeleteI think this is one of the hardest things. Trying to do things as a family when one member simply can't do it. And once the very difficult decision is made to allow those who CAN enjoy an activity to go ahead, we get the questions or quiet little judgments. Why didn't your bring Maggie? Doesn't Sally want to be here? You cannot win.
ReplyDeleteAnd that is why you have to do what works for your family. There are silent benefits too - Henry and Oliver will be excellent men, just as they are boys with compassion and respect for all.
It seems the benefits are REALLY silent and very well hidden. It's like unwrapping a package with another package inside and then a smaller box and then a smaller one etc. We will test the theory that good things come in small packages if we even find our way to the box with the prize
Oh god. Well, we all do what we can do and that's all we can damn well do.
ReplyDeleteNo, it sure isn't perfect but what is?
Oh honey. I don't even know what else to say except to say once again- you are a fabulous mother, an amazing woman and you deal with the realities of the situation as well or better than anyone else could.
And let the rest go if you can.
The gods will surely smile
ReplyDeleteAt least once in awhile
On those who tell truth
Seems I can count on you for a daily dose of authentic. Peace
My family, we lost a lot because of Katie. Sigh. Hasn't been a good day/week/month.
ReplyDeleteI can relate to this on a completely different subject. Love to you, Elizabeth.
ReplyDeleteI feel certain that your children know that the decisions you make are made with love and honesty. Despite the times when things don't go as we wish they would, your intentions will never be in question.
ReplyDeleteThis post hits home with me as I am leaving tomorrow morning for five days away from my girls - something I have only done one other time. Lola is stressed and upset, asking the same question as Oliver, but I know this is something I have to do for me. It will be sad, but I know she will understand one day.
Love.
Oliver's tears break my heart a little. I was just advocating for one on one time w/each child - but there aren't supposed to be tears. I hope your week is full of peace & books.
ReplyDeleteI hear you loud and clear, Elizabeth. Our daughter doesn't have the physical needs Sophie does, or the wheelchair, but her behavioral issues make it such that we have to consider whether she can handle a new restaurant, zoo, amusement park, vacation, etc. When she was little we could strap her in a stroller and take her along, but she is too big for that now. I know they have strollers for larger kids but she walks perfectly fine, it is a motivation issue, so we hesitate to look into that. Besides, if she was screaming and throwing things from the stroller that wouldn't help. And regular baby sitters don't work; we are trying for occasional respite care.
ReplyDeleteI often feel the pull between do we make adjustments and bring her along so we are all together as a family even though my other kids cannot do everything they would have liked, or do we leave her with grandma (sometimes works!) or with one of us and take her brothers without her. Sigh. I often feel like your son: "why can't we just all be together like a regular family." (my paraphrase)
Carrie T. - mom to 3 typical boys and one SN daughter
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ReplyDeleteThank you for this, Elizabeth.
ReplyDeletexo
This post is clear and true, and it is a gift - as so much of what you write is a gift.
ReplyDeleteI'm so sorry that you can't all be together on that trip. It must be hard on all of you, each in his own way, to have to split up. You do a wonderful job of making the very best of everything you can. You are such a loving, caring mother. I will bet that your family feels that love, holding them together, even though you are apart geographically.
" We yearn to be a family like everyone else in my extended family -- a family that can pick up with relative ease and just go."
ReplyDeleteI understand this, (for different reasons, obviously) but I SO understand this pain. And the pain for your kids, who have never lived a "normal" life like they witness other families living, day in and day out. And even though we see many good things in our kids (sensitivity, etc) because of what they've lived through, that phrase you used, "nearly existential sorrow" resonated with me, so deeply.
I can only wish for you the things I pray for me and my family - grace, and love, and relief. Please God, relief.
Difficult, to say the least. I am reading your posts backwards, sitting in my brother's basement bedroom in Iowa where I've come to pick up my mom. It seems to me, that if you are going to write a children's book, this might be the germ of it. Maybe in the voice of a child like Oliver who is at the the crossroads of the next stage of understanding the struggles of his family. "Why can't we....." is such a plaintive cry. In the story, as it unfolds, come your answers.
ReplyDeleteOh boy, can I relate here. "...acknowledgine what is fact and accepting what will never be"...I fight that everyday.
ReplyDelete