Call me crazy, but 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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Thank you for putting into words what I’ve been working through the past number of years. I do believe that God has taken me through a process of panic to peace (well, more peaceful than panic. I must admit there are still times of panic.)
The early years were difficult, and still there are some days that are difficult – but they seem to be less and less. God loves me. God loves my daughter. God is good. Those are the truths I hang on to when the days seem longer than normal – but there are days, many days, where I can look and be excited about our future together as a family. And that excites me, for I know that I’ve grown in maturity and in Christ.
Thank you for writing this. It is exactly what I am struggling with right now. My daughter is on the Autism Spectrum and as she was curled in my lap last night I thought…will this be forever?
This is beautifully written. I, too, wonder whether my son will live with us forever, and if so, I will be 100% okay with that. I had to laugh at the contract – so tempting, huh?
I wonder if your daughter is thinking, “I hope they want to live with me forever”. You are wonderful parents and she will continue to thrive in your care.
I LOVE this. Touched my heart deeply. My son is almost five and has nonverbal Autism. We are fairly certain he will live with us even in adulthood. I hope we can outlive him 🙂 that’s my only concern. I love your perspective and can’t wait to share this with others!
I have a 31 year old daughter who still lives with us. I also struggled with this thought of “What if she lived with us forever?” She cannot drive and is still dependent on us for the necessities of life. She has a very part time job helping to clean at church, which gives her some spending money (she usually gives most of it away to others more needy or buys gifts for her few close friends). But, because God has her heart, she is the sweetest young lady! She may not speak much, but when she does, you hear deep truths about her Savior. The spiritual gifts He has given her blesses everyone who takes the time to know her and listen to her. The Lord also showed me that my heart was lacking unconditional love and a work began that has lasted many years. God knows what we need. She doesn’t’ just need me, but I need her, to grow to be more like Him. Praise Him!
: D Your thoughts are pretty much my thoughts on this matter. My daughter with DS is turning 19 this summer. She still likes to do the same things she did when she was little. She is still the fun loving, happy (mostly) girl she’s always been only more mature and gaining independence. I want so many things for her that I wanted for my other children, but with her, I may get the joy of never having to say goodbye when she moves out. At least I hope I do. What seemed like a huge burden when she was born, has become a tremendous blessing. Like you, God shattered my heart, but what He has built back up in me is far better than I had ever dreamed. Still a long way to go and I pray many, many more years with my daughter but I look forward to the future with anticipation now. God continue to bless you on this journey, my fellow traveller.
Over the past three years I too have struggled with that question. Our daughter was born completely blind and has ONH/SOD. It saddened to know that she may never be able to live independently outside of our home, but I now embrace the idea of having her live with us forever if that is what she chooses. We are currently building our dream home which includes a mother in law Apt in the basement. That way when our daughter grows up she can still live in our home, but have her own independent space! Thank you for sharing. Only others that live day to day with special little souls can truly understand….sometimes the littlest things turn out to be the biggest!!!