I’ve gotten a lot of really interesting questions lately. Of course, when something major happens in your life, every question seems to carry a lot of weight. (“How are you?” for instance, followed by significant looks.) But one of the questions I got that’s been on my mind lately, is, “What have people said that has not been helpful to you?” What an interesting question to be asked! We have been the recipients of so much service. All of it has been given in love. But this question highlights a pretty common problem: people want to help, they just don’t know what to do, and it’s awkward for them. So I thought I would write a blog or two on what has been really helpful, verses what has been... less so. Keep in mind that this is all written from my perspective, and since everyone is different some of these things may not apply to every individual. But I’ll try to focus on things that are likely broadly applicable. ;)
Not Helpful: Advice on childbearing.
I am of the opinion that it is probably never a good idea to tell someone how many children they should have and when they should have them. After struggling to have our first and experiencing miscarriage later, I would even advise against asking when someone is planning to have a child at all. Because for all you know, there may be a lot of pain in that answer, and besides, is another family really anyone else’s business, anyway? Also, I am the kind of person who, immediately after even a “good” pregnancy and birth, never ever ever wants to go through that experience, again! Hah! Asking a recently-delivered mother when she’s planning on the next one is a recipe for disaster in my opinion! Add to that that this was not a normal birth. It was a difficult pregnancy followed by a shocking birth diagnosis accompanied with severe health challenges. LIFE ALTERING. So, when a couple that I had never met before in my life approached me, said they knew about our “situation” and confidently certain that they understood advised, “Don’t let this stop you from having more kids! Our daughter had a child with such-and-such issue and she had more kids and has faced her challenges brilliantly and changed the world and...” it didn’t sit well with me. I mean, good for your daughter, truly, and kids are amazing and all, but I have literally just been handed the challenge of my life. I am not your daughter and our circumstances may not be the same. I am COMPLETELY overwhelmed. Like any new mom, I can barely find time to shower, let alone face open heart surgery/a lifetime of challenges, and in my spare time contemplate having another child and “getting it right” while using this child as a platform to change the world. Just let me love the kids that I have the best that I can and let that be enough, ok? Because trust me, it’s enough. Along the same lines someone else said, “But you’ll have more kids...” which kind of sounds like we need a “redo” because this one didn’t turn out. Guys. She turned out! She is just the way God meant her to be, and I’m not going to start her life by disregarding her and moving on to the next one.
Helpful: Celebrate my daughter’s birth and welcome her with open arms.
I cannot express the gratitude and love I have felt for people who have celebrated my daughter’s birth. Who have thanked me for bringing her into the world, just the way she is. Who have expressed excitement over getting to know her and watching her grow. Who have committed to be there for her, always. Who have said she’s influenced them for the better. While I didn’t appreciate being told I needed to have more kids, I did appreciate that this couple viewed their grandchild with a disability as valuable—because every child is valuable!! And no child needs to achieve a certain academic level, receive a certain award or accomplish a specific task to prove it. They just ARE. No Mom has to write a book to make her disabled child’s life “worth it.” If she does, awesome! But that child was significant all along, and his/her mother was enough, too.
So to conclude, people mean well and I don’t want them to feel like they have to tiptoe around what they say. But it’s not helpful to give an overwhelmed mother more to do or live up to. It is helpful to be there for her, where she is. Celebrate her baby. Tell her she’s doing a great job. Love her and her child unconditionally, and offer to help lift her burdens. What she needs most is just what she’s trying so hard to give: pure love.
Sometimes people make comments that illustrate they don’t know much about Down syndrome, which I understand because I didn’t know much about it aside from stereotypes before Lydia was born. So, just for information’s sake:
We’ve been asked if it runs in our families. Down syndrome in 99 percent of cases is not an inherited condition. Nor does it occur because of something that the mother did or was exposed to during pregnancy. In the vast majority of cases (including ours), Down syndrome occurs BEFORE conception, when either the egg or sperm contains an extra chromosome, just because. Families of those with Down syndrome refer to this as “winning the lottery” =). The only known risk factor is increased maternal age at conception, but most people who have children with Down syndrome are younger than 35 because that’s the largest childbearing age group. Now you know!