The grief seems to hit out of nowhere. Most of the time it lays dormant, but some days it just takes my breath away. This is the grief of the special needs mom
If you have known me very long, you know I am FIRMLY planted in the camp of thinking that my children with disabilities were perfectly made. I have quoted Psalm 139:14 a million times. I just don't believe God makes mistakes. And yes, it gets philosophically deeper and more complex than that, but at the end of the day, I hold fast that people with disabilities are not broken & God has a plan for them.
But some days I grieve. Sometimes this plan is not easy for me to understand. Some days this particular picture of "fearfully and wonderfully made" Is. Not. What. I. Want.
There are days I want off this path and on the path where my kids are all honor students. I don't want to spend the next 30 years changing diapers, but I might. I long to have conversations with my daughters. I don't want to navigate puberty and adulthood and independence with children with significant disabilities. I just don't know how I can do that. This weight is so much.
Sometimes it weighs on me extra. I don't compare my kids, because I love their uniqueness, but sometimes it's hard not to... 2 1/2 yrs ago Sassypants came home at the same functioning level as our Ladybug. Sassypants had 6 1/2 yrs of institutionalization to overcome. Ladybug has been adored since the moment she entered this world, and has had medical care, therapies, and an entire family has learned how to help her since she was an infant.
In 2 yrs I have watched Sassypants go miles while Ladybug has gone inches. I ask myself... what more can I do? Where have I gone wrong? How will we get where we need to be at this rate?
It's really not me, I know this. They're built differently. That's okay. That's WONDERFUL. And it's still hard to swallow. This is the grief. I rejoice with you when your child wins an award or gets married. And I grieve that 2 of my children will not have that. I celebrate that my girls are in the mainstream classroom all day, and I grieve that it requires meetings and staff and a whole complicated dance to make that happen. I push for more inclusion everywhere but I hate that very often the cost of their inclusion is my exclusion, because I can't be with the other parents. I stand boldly for the rights of people with disabilities while silently grieving that many people not understand that they should have these rights.
This is a hard journey. Special needs parenting is a difficult task.
It is a hard line to walk - speaking to the raw, honest truth about how hard this can be and speaking to the other truth: that ALL of my children are amazing and worthy and made in God's image - even the ones with disabilities. I fail at sharing the hard parts of the journey, because I want you to see the VALUE of my children. So I share the new words and the milestones, and I skip over the days I scrub poop off the walls. Today I'm tired and grieving and I'm sharing that.
Today I'm being brave and baring it all to tell you: this is hard work. In our family 2 kids have disabilities, but the WHOLE FAMILY has special needs. It is always this way. The whole family needs extra. More on that later I suppose. But for today, I'll just be brave and admit that this journey is often tremendously hard. And then I'll make myself a cup of tea and sit down for a moment and allow myself to grieve, all the while continuing to marvel in the wonder and perfection of my children - all of them.
"I praise you because I am fearfully and wonderfully made; Your works are wonderful, I know that full well." Psalm 139:14
But some days I grieve. Sometimes this plan is not easy for me to understand. Some days this particular picture of "fearfully and wonderfully made" Is. Not. What. I. Want.
There are days I want off this path and on the path where my kids are all honor students. I don't want to spend the next 30 years changing diapers, but I might. I long to have conversations with my daughters. I don't want to navigate puberty and adulthood and independence with children with significant disabilities. I just don't know how I can do that. This weight is so much.
Sometimes it weighs on me extra. I don't compare my kids, because I love their uniqueness, but sometimes it's hard not to... 2 1/2 yrs ago Sassypants came home at the same functioning level as our Ladybug. Sassypants had 6 1/2 yrs of institutionalization to overcome. Ladybug has been adored since the moment she entered this world, and has had medical care, therapies, and an entire family has learned how to help her since she was an infant.
In 2 yrs I have watched Sassypants go miles while Ladybug has gone inches. I ask myself... what more can I do? Where have I gone wrong? How will we get where we need to be at this rate?
It's really not me, I know this. They're built differently. That's okay. That's WONDERFUL. And it's still hard to swallow. This is the grief. I rejoice with you when your child wins an award or gets married. And I grieve that 2 of my children will not have that. I celebrate that my girls are in the mainstream classroom all day, and I grieve that it requires meetings and staff and a whole complicated dance to make that happen. I push for more inclusion everywhere but I hate that very often the cost of their inclusion is my exclusion, because I can't be with the other parents. I stand boldly for the rights of people with disabilities while silently grieving that many people not understand that they should have these rights.
This is a hard journey. Special needs parenting is a difficult task.
It is a hard line to walk - speaking to the raw, honest truth about how hard this can be and speaking to the other truth: that ALL of my children are amazing and worthy and made in God's image - even the ones with disabilities. I fail at sharing the hard parts of the journey, because I want you to see the VALUE of my children. So I share the new words and the milestones, and I skip over the days I scrub poop off the walls. Today I'm tired and grieving and I'm sharing that.
Today I'm being brave and baring it all to tell you: this is hard work. In our family 2 kids have disabilities, but the WHOLE FAMILY has special needs. It is always this way. The whole family needs extra. More on that later I suppose. But for today, I'll just be brave and admit that this journey is often tremendously hard. And then I'll make myself a cup of tea and sit down for a moment and allow myself to grieve, all the while continuing to marvel in the wonder and perfection of my children - all of them.
"I praise you because I am fearfully and wonderfully made; Your works are wonderful, I know that full well." Psalm 139:14
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