I love to read Kathleen Basi’s blog for her portrayal of the difficult beauty of life. Kathleen approaches a raw honesty which is itself a challenge for blogging mothers who must present themselves as perfectly pulled-together; you know, women you can admire and follow. But I confess that one of the things I love most about Kathleen’s blog is when she writes about her elf child. The posts are not simply beautiful, they are full of a beauty which is profoundly challenging.
Sometimes I run to my husband to make him read and ask: “could we do that?” He says that of course we could. Yet I hesitate. I know that we could fulfill the basic duties of a parent, but could we love that well and live powerfully with a beauty so challenging?
Before Josh and I married we talked about various challenges with adoption. I said that I did not think that I was prepared to parent a child with severe developmental disabilities. But I knew that if it were a question of birth rather than adoption I would consider it my duty to become “prepared.” So how could I count myself permanently unable to parent simply because another women had given birth to the child? Why could I not learn the way that every other mother does?
And then I started thinking about why it is that no one really values these children. I know many people who dream of having a large family. They know that it will be a challenge, but it will be oh-so-worth it. Yet I have never once heard someone say that she hoped to someday raise at least one child with down syndrome. Pro-lifers will say that it is a great shame that the majority1 of those who receive a prenatal diagnosis of down syndrome will choose abortion, but we show so little sign of wanting these children. We do not want their mothers to end their lives before they are even born, but we also do not want to spend our own time advocating for basic services to make their lives just a little easier.
I do not have any firm conclusions. For now I just keep reading Kathleen’s stories and looking for little opportunities to make life a little easier for those who actually live with this challenging beauty. So far that has meant absolutely nothing in terms of actually accomplishing something. I do not feel guilty for doing so little, so much as I am bewildered by why no one else seems to care.
What do you do when you see a beauty that requires a significant amount of work and is dramatically undervalued by our culture?
1.Some estimate that it is around 80% in the United States and 90% in the United Kingdom.
Rae,
We have two special children in our family. My baby sister has two boys on the autism spectrum: one fairly highly functioning, the other, the younger, much less so. It isn’t easy; they have presented our extended family with many challenges over the years. And yet there are days when my sister and I trade our “mother” stories that she decides her difficulties in raising two special needs teens are less than mine are with two so-called “normal” teens, mostly good kids though they are.
Parenting is always an adventure … a gamble if you will. You join with God in the creation of something brand new. And while you may intend for the best, pray your hardest and do all you can, there are no guarantees, regardless. Nevertheless, we do it. I still don’t know how my “grand adventure” will turn out. I’m still praying and working and doing my best…
“And while you may intend for the best, pray your hardest and do all you can, there are no guarantees, regardless. ”
That is a great perspective!
I don’t know any answers, but I like the questions that you raise.
Rae,
Not everyone is meant to parent a child with special needs. They say that it makes or breaks a marriage. I tend to scoff a little at that, because I truly believe that love is a choice. But the fact is there. And I must add that when we were going through the international adoption process–back before my body decided to start carrying babies–that we went through this same set of questions, because we knew it would be a much shorter wait to be matched to a child with special needs than if we waited for a “perfect” baby. We waited, and I never quite felt comfortable with that decision–so perhaps God was trying to tell me something. I was meant to be Julianna’s mother. Not for her sake, but for mine. Just as I was meant to be mother to the unique individuals who are my two typically-developing children.
What is different now for me than it once was is that now, when I see a person with a disability, I make an effort to smile, to connect in some way–to touch, when possible–because so often we’re afraid of people who are different–as if we’re scared that mental retardation, or physical deformity, is catching. For my own spiritual growth, that effort to cross the divide is what I need.
I agree with you that not everyone is meant to parent a child with special needs. But I do think that all Christians are meant to value all children. And in my little part of the world it seems as if no one actually cares about these children. I do not feel particularly called to parent a child with developmental disabilities, but I do feel called to be entirely open to it (without feeling disappointed) should the need arise. And, to be honest, I think that I only got to that point after reading your blog for a while.
I am most often afraid that I will say or do the wrong thing, but have been really blessed by a response of pure joy from the adults I have encountered with down syndrome.
I would welcome a down syndrom baby with open arms.
I can’t say I want one, because it’s still a health problem and I don’t think you can hope for a baby with health problems.
But I started thinking about it when we first talked about marriage, I read a blog of a lady who had a down syndrom kid (and 5 fully healthy ones) and ended up adopting 3 more DS children.
I know my husband would freak out. We talked about it “what if our baby…” and he said that would be a huge strain on him to never ever have time for us as a couple…
I even once suggested ” what if in a few years we adopt…” but he thought I was crazy… :/ Maybe I am.
We’ll see what life has in store for us.. if a DS baby is in it I don’t exclude to adopt more. But so far it’s me speaking, and it would need to turn into a “we” before anything happens..
I know what you mean about getting from “I” to “we!” In my case though it seems to be my husband who is always able to respond with an open love while I tend to think about how difficult something would be.
Tiphaine–just a note…never having time as a couple is something separate from having a child with special needs. Generally speaking, anyway. Different counties/states have different programs available to help with that. In our county we are eligible for “home-based support” which pays to bring a caregiver into the home. Not every place has such a thing, but I just wanted to stress that having a child w/special needs does not automatically spell the death of couple time.
Kathleen: Not every one is meant to parent a child with special needs…. well….. maybe that’s true. Maybe. But… when you’re given one, it doesn’t really matter whether you thought you were one of those people are not. You, in all your weakness, will now BECOME the right people. This is what my parents had to do with my youngest brother when he was diagnosed with Downs Syndrome after he was born.
Can it rip apart a marriage? Maybe, but then, most suffering can rip apart a marriage. It always CAN. The question is not CAN something do us harm or be very difficult, but really: will we let it? Our culture avoids anything that isn’t comfortable and easy, but that is perhaps our biggest downfall.
It’s still hard for my parents to parent my brother. It has definitely caused tough spots as a family and in their marriage. It’s also been on of the most beautiful, redemptive things to happen to our family. It just depends on how you respond to the difficulty.
I think that Kathleen’s comment was meant in reference to adoption and not about one’s responsibilities when one is “given” a child with special needs. At least I understood her to be saying that she did not feel called to choose a child with special needs, but has certainly become the best mother for the daughter God gave her.
While reading through these replies I couldn’t help but think of a conversation that happened w/ my husband while we were pg w/ our first. He made a comment about how he couldn’t handle it if one of our kids had DS. I remember it worrying me… Like others have said, not something I hope for, but I would love my child regardless. Awhile back the subject came up again and his attitude on the subject was completely turned around. I don’t know if its being a parent or growing up a little more or what… but I was/am proud of him.
As for adopting. I want to adopt… down the road when we can of course. I honestly haven’t put a lot of thought into special needs though. I think it will depend on our situation… I’d hope that we would/could be open to it. One of my cousins is… She told me awhile back that she wants to adopt a deaf child in particular. Her soon to be ex was against it though. We’ll see what happens in the future w/ that, but I’m proud of her either way. She’s a great mom.