One of the first thoughts that crossed my mind when my daughter was born with Down syndrome was, “Will she live with us forever?”
When my oldest was born, a typical baby girl, those thoughts would have felt so…outrageous! I mean, who thinks about their child moving out the day they’re born? But with Nichole it was different, Down syndrome rocked me and I was immediately wondering if she would ever live independently, if she would ever get married, if she would ever have a job.
I had expectations for my kids and I didn’t even realize I had them! I also thought I knew all about unconditional love simply because I was a mother, but dealing with my daughter’s diagnosis showed me I had much to learn about what unconditional really meant, and about how to love well, with no strings attached.
And so I grieved my daughter’s diagnosis. I cried. I shook my fist at God. I broke. God built me back up. I chose love. I changed. I am now smitten and she has me wrapped around her crooked little finger, no doubt about it!
So what if she lives with us forever?
At first I was scared about what life would be like having a child with Down syndrome, but here is the thing, I really, really enjoy my daughter. We have some pretty sweet moments together.
On Saturday mornings, she wakes me up. She gets in bed with me, and she sings happy birthday. I guess she thinks a nice day at home should be like a birthday celebration. We sit up in bed and we talk, then she asks me if I want some coffee. She usually gets some coffee too (I drink decaf with creamer, she loves it). So we drink our coffee together, she takes a sip, I take a sip. We smile at each other over the rim of our mugs. I hope she still wants to do this with me when she’s 15, and 21, and 30 and forever.
When daddy comes home, a celebrity has arrived home. She runs to him, she gives him hugs, she cheers. And I know what he’s thinking, I hope she still looks forward to me coming home when she’s 15, and 21, and 30 and forever.
There is a quick run to the grocery store, the other two girls are too busy to stop their games to come with me (or my husband). But not Nichole, she is ready to come join us and keep us company, our little buddy. I hope she still has time for us when she’s 15, and 21, and 30 and forever.
A friend has an adult daughter with Down syndrome, every week her husband and daughter have a movie night. I know what my husband was thinking when we heard this, I hope that is me in the future, when Nichole is 15, and 21, and 30, and forever.
Maybe having a child that lived independently was a dream I had for my daughter, but it is not a dream I have for her anymore. And make no mistakes, I am taking about my dreams, because it might be her dream to move out, and be on her own, and I will have to accept that, get a good cry, and let go.
What I once feared so much is something I now would welcome with open arms. I enjoy my daughter, and the thought of having her around makes me smile.
“Nichole can almost print out and writer her name.” I say to my husband.
“That is pretty cool.” He says.
“I think we should make her sign a contract.” I say.
“For what?” He says.
“That she promises to live with us forever.”
Don’t worry, we won’t do that!
I have come a long way (besides, I am from Mexico, and this is culturally acceptable, most adults live home until they marry).
Of course we will not make her sign a contract, and maybe this is the hard part, the letting go. Because everything in me wants to keep her close, but that wouldn’t be putting her first. She will get to make her own decisions, live her own life, and she might choose to live away from home.
But what if she lives with us forever? You know what, I will be totally okay with that!
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Hi Ellen, I’ve thought this about my 12yrold daugher, D’Andra who has Down syndrome. In Hawaii and the Philippines – my cultural heritage – it is normal to have several families living under one roof. I’m aiming for independence for her – maybe living in an apartment with some friends across the street from where I live and having a job but I’ve often thought what would happend if she didn’t move out. I don’t think it would be so bad to have her here with us forever but thankfully there are support systems if she chooses to live semi-independently. We have a house where she could have her own apartment downstairs when the boys move out. So lots of options for her.
Leilani, have you watched the documentary, “David and Monica”? It is about a couple with Ds, and they are married, and they live with her family. I saw myself in the mother, similar culture, but also what she said was eye opening (and I am paraphrasing) “I fought so hard for everyone to treat her like a typical person, and now look at me, I am the one holding her back” Yep, I don’t ever want to hold my daughter back! So if she tells us she wants to be independently, like I said, I will get a good cry and let go 🙂
Oh Ellen I so know and remember those feelings well! But as Cassey is now soon to be 17 she has decided she is moving out and wants to be a big girl. She wants to live with friends and be able to still visit Mom. Because I am 51now this is music to my ears! Don’t get me wrong I’d love for her to live with me but I also know it is better for her to be independent…with me she has a tendency to depend on me too much…she often says ” I can’t Mom” but at school and with others she does things all on her own. She is growing up so fast it is SCARY and sad and joyous….I want her to be successful in life and now I know and feel she can be!!!
Sherry, I can picture her saying that to you! And you know, there are some great options where you are at!
I think about this too. I kind of just assume she will live with us. And I’m good with that. It doesn’t seem scary at all. I mean, we’ll be great pals, I’m sure. 🙂 And it’s funny that you mentioned the movie night with dad… M has already been having them with her because she requests to go to the movie theater frequently, telling him what she wants to see since we live blocks from one and she sees the sign several times a day. He said recently that he’s looking forward to her being his movie buddy for good. Whether or not she opts to live elsewhere is something we’ll deal with when we get there, and we’ll support that if it’s right for her, but for now, what’s wrong with a little contentment that we might get to enjoy her for longer than 18 or 21 years, right?
See, and if you guys move close to us, it could be so fun to have our families together for some of those movie nights (and we have those already too, Nichole thinks they should happen daily).
I love this, Ellen. Now that my kids are both married and live 4-5 hours away, I sometimes wish they were still home. And I’m counting the days until retirement when we move closer to them!
Jolene, my mother will live with us some day, it is cultural, and I look forward to it! 😉
Ummmm, welllll, I have a confession to make……..I really, really, really want Owen to live with me when he’s older! And I know for a fact that he won’t want to. He is going to want to be that social butterfly that he already is at age 5 and he’s not going to want a thing to do with me. SO I might just make him sign a contract!! 🙂
We talked about this last time, didn’t we? I know, I sometimes find myself thinking if we could possible add an apartment to our house…or backyard! ha! I do have the advantage of having another culture, I mean, at some point I might need Nichole to live with me to help me care for my parents!
I love this post. My husband has always said if our son lives with us forever he would be over the moon. Of course I automatically reverted to the idea of us pushing him to be independent, and that it was the ultimate goal. After reading this It makes me realize what my husband has been expressing all along. It’s pretty awesome either way. Great post!
When we got our son’s Ds diagnosis at only 12 weeks pregnant, I looked at my husband and said, “I don’t wanna have a 50-yr-old kid at home when I’m 80.” But almost four years later I think that’d be just about the best thing ever!
Dear Ellen, wow! What an amazingly powerful post full of love and truths. Our son is 16 and we are wrestling with this right now . We know that we would love him to live with us forever but we have moved on to the next stage which is where will he live when we have gone ? We feel like we have been blindfolded and spun in a field . It is so hard. There is the unconditional love, the companionship, the fun and kindnesses we share, who would want to let go of the glory of that? I said to him, ” How do I know that you will be safe? How do I know they will be kind to you at college?” He looked at me and replied, “Trust me.” Is that the answer?
Jeanette, that is powerful, isn’t it? To have your child say “trust me” Hmmm…how would I answer if my girls said that now? But, we do know their struggles, and that is the hard part, isn’t it? I know my oldest already says she will watch for her sister, and I think she will. But yes, I do think the older our kids (and we) get, the more this becomes a reality. What about when I am gone?
There’s the rub, ‘We know their struggles.’ With my older son who is having a year out before University, I know his struggles too but have I stopped him travelling? No, have I felt that I have warned him sufficiently and given him tools. I hope so. If you took the beauty of your culture out of the equation for a moment and asked, ‘Should we let them live within the finitude of their understanding?’ It is so interesting to look through the cross section of replies that you have had from the different stages of parenting. I feel like I want to get everyone in a room together and gain some wisdom. Joyce is great, so pragmatic and such a great problem solver. Such a great post, so much to learn x
So, my daughter is 24. She has lived in a trailer on my property for about 2 years, but recently decided to move back to my house… I’m kinda glad and I think she is most days…
When she told me she wanted to move out there, I was proud, but kinda shocked… I never thought I would live alone (I am a single mom). We worked hard on independence skills and we learned ALOT! We also learned that she can’t have unsupervised tv or internet for lots of reasons, so I cut it off… it was about 4 months later that she thought it would be nice to be back home with me… she had lots of good reasons… good food, good company… but I’m pretty sure it is the internet availability. I like being able to monitor her use more closely.
Now, we are more like 2 roommates. She has kept her independent skills…. she still makes her own meals and likes to do her own thing.
When your child “grows up”, there are expectations… they move on. But the reality is that ours do it alot more slowly and may never reach full independence.
You ask the question… will my child ever move out?? The better question is… will I be actively parenting this child forever? The majority of parents that I know are ready to be done parenting, so they find a “good” residential placement for thier adult child. They are no longer in charge of actively parenting thier adult children and they can move on with thier lives.
I have chosen not to place her somewhere and move on with my life, but instead to incorporate my daughter into my life and continue to enjoy watching her grow, learn and develop. It is tiring and restricting sometimes, but well worth it.
My friend once told me that our daughters would be keeping our nests warm forever. I like that.
Joyce, great thoughts! And great question! I know I would answer different from my husband, because culture does play a role in this, at least at this point in life, I do, ask me in 20 years 😉
Now that my son with DS is a young adult, people continually ask me if I’m planning for him to move to a group home…no, I’m not planning his move…when he is ready, I’ll help him find an appropriate place, and complete the paperwork. But, I won’t ‘remove’ him from our home…leaving needs to be his move, not mine. He has in-home supports that allow him to have staff assistance in the community, which seems to be a good transitional situation for him at this time. He likes to go out without Mom and Dad, but he loves the security of knowing he can return to family who understand him.
I so understand what prompted this post. We have the same worry/fear/hope/joy with our little girl. Will she ever be independent? If she is that is another whole worry. If she isn’t that is actually easier because we love her to the bottom of our souls. One day our oldest heard someone asking if Boo would ever live alone. I had no idea that she was even in the room and Abby replied: Of course not, she is going to live with me when she is older. I have her room all picked out.
My point is, your Nichole may or may not ever live away from you, but whatever happens it will be the best for all of you.
God so clearly wove together the journey to our daughter with DS. At a wonderful Christian summer camp for three weeks (when my daughter, who does not have DS, was entering seventh grade) there was a sweet girl named Lainee with Downs Syndrome in her cabin. My daughter loved her so much.
When Emma got home from camp and was telling me about Lainee, the first thing she said was, “I was surprised how much Lainee could do. She could read and talk and take a shower on her own. I had always assumed that people with Downs Syndrome just sit there and can’t eat or communicate.”
It ended up that four months later, Lainee’s family switched churches: to our church. We were shocked when Lainee went right to Emma and recognized her. and Lainee got to be very good friends, and over the next three years they would go over to each other’s houses at least five times per month. I especially enjoyed having Lainee over at our house – she gave the best hugs! After a few months, we altogether forgot that Lainee even had DS. Emma would always tell me that people would stare at them in public and she would wonder why. Then she would remember that Lainee had DS.
When we felt called to adopt from China, with no hesitation I said we were open to adopting a child with DS. Lainee moved to another state two months after we brought Bailey Rose home.
Emma is a senior in high school now. To this day, Lainee remains one of her dearest friends. They Skype ever week. Lainee is coming to spend a week with us in July.
It is my prayer that Bailey Rose finds a friend as good as Emma has been to Lainee.
Amy, thank you so much for sharing this story!
We may love having our kids with DS living with us always, but there is no forever. If they outlive us, then what? What a shock for them once we’re gone. For that reason, I think it’s better for them to move out while we’re still living and can help them through that adjustment. As much as I don’t mind having him here, I pray we can make that happen for our adult son long before we’re gone. And yes I’ll be crying while we do it! 🙂
Diane, I have heard your same concern from people who work with adults with Down syndrome and have witnessed they do not transition well when the living arrangement changes after the parents are gone. Still, I think I will want to keep her with us as long as she will be willing 😉