Living with Down Syndrome: A Mother’s Journey

Marsha- So what do you think Kelle should do? Hate life and spend all her time fearing for the future? She didn’t choose this life, it was given to her. I commend her for adoring her unique daughter as much as any other child and having absolute hope that her future may be brighter than people like you ever imagined.

I’m sure Kelle is aware that this journey has just begun.

I, too, came across Kelle’s blog by accident, but have been drawn to it ever since. Her writing is so raw, honest, and full of emotion. It’s beautiful. One thing I’d like to add is her girls are so lucky and blessed to have her as their mom! She has a heart bigger than her body and that’s what all her readers, I am sure, are drawn toward. Kelle, you are a rock!

Marsha: Just want to correct you when you say the child will have the mentality of a child all of its life. This child is not an “IT”, but is a girl. With the right love, care and supervision, SHE has a chance of a fulfilling life. Children can be taught and they do learn. Instead of talking about the long, long, long, long road ahead for this mother, you’d be wise to educate yourself about people with Down Syndrome and the many, many possibilities available to them.

I work with a special needs man. He has worked with me for over four years. He works the hardest out of anyone there. He is amazing! So Marsha I think you need to look more into it before you start saying things you obviously don’t know. Any mother/father raising a child has a long road ahead of them, special needs or not.

Why is it that some people have to attack the optimistic souls? I, along with my sweet cousin Kelle, are choosing to seek out joy, beauty, and happiness. People will disappoint us. Life will knock us down once in a while, but we’ll recover. We’ll find more to be thankful for. Beauty will surprise us. Marsha’s comment makes me feel sad for her. What a sad and angry life she must have. I hope Marsha finds peace on her very long and painful road that she is choosing to live.

I like what Lisa said. If you look for beauty you will find it. There will always be a mixture of good and bad in our lives but it’s our reaction to the bumps in the road that matter. The choice Kelle has made is to celebrate her children. It’s a choice all good moms make.
I’ve noticed in reading all the responses that many are from parents of children with special needs and all these parents are grateful for and love their children. Life is good.

It’s too bad that the tone of this comment board has been dictated by one post…so I’ll ignore that. I have only known Down’s Syndrome children tangentially. My mother taught swim lessons at a group school and each of my daughters has had a favored classmate who had Down’s. I came away from each of these contacts with awe at the pure loving temperament that all of these kids displayed. It’s an amazing good-natured sweetness that I don’t think equates to anything in those of us who are “normal”. It’s like Down’s kids’ brains are uncluttered with information/knowledge/judgment. And it’s a temperament that I found very appealing and almost magnetic. I LOVE Kelle’s unfettered honesty about her own emotions and her personal growth. Can’t stick around….gotta go find that blog!

I’ve been following Kelle’s blog ever since I found out that my baby had a good chance of having Down syndrome. I think her story and her daughters are absolutely beautiful, and I agree that she and her family are very lucky to have Nella in their lives. Tragically, I lost my daughter to severe preeclampsia. I was able to hold her and look at her before she died, and she was gorgeous and perfect and looked a lot like her daddy. And yes, she did have Down syndrome. We might have faced certain challenges, but every parents does, regardless of the number of chromosomes their children have…and I would face anything if it meant having my daughter back with me. I wish with all my heart and soul that she was still alive. She was so wanted and is so loved. Every life is precious and unique, and I feel like I was robbed of the sacred opportunity to raise my little Molly, with her extra chromosome of awesomeness. I miss her so much.

Thank you, Kelle, for being an such an inspiration and for sharing your incredible journey with all of us.

Hi, Marsha Marsha, I think I hear what you’re saying. If I understand correctly, you object to painting a rosy picture that doesn’t include the possibility of very real hardships. On a certain level I agree with you that it is important not to turn a blind eye to the fact that being a parent can be so, so hard, and that there can be particular challenges to raising a child with special needs–and to acknowledge that sometimes there is suffering involved. But suffering is part of the human condition. Every one of us as human beings suffers during our lives in some way or another, and we all have heartbreaks and hardships at some point. Every single one of us. Another blogger that I follow calls life “brutiful,” and I know this to be true: Life is simultaneoulsy brutal and beautiful. I just suffered a horrible, heartbreaking loss, and I’m still reeling from it. I know from personal experience that terrible things happen, and that life is hard. But you know what? Being a parent is hard no matter who your child is, and I desperately wish I would have had the opportunity to find that out for myself. I’ll take the hard. And the beauty. And the smiles and the tears and everything in between. Because having a child with special needs is not the worst thing in the world that could happen. Oh, no. **Losing your child** is the worst thing that could happen. Instead of being a parent to a living, breathing little girl with her daddy’s long eyelashes and her mommy’s small feet, I am a mother to a dead baby.

Kelle and her husband are just an example of people who are trying to maximize their happiness and be grateful for their blessings, while concurrently dealing with the challenges of being parents. I think Kelle just wants to share that along with the hard, there are times of grace and joy.

So I will continue to follow Kelle’s journey as long as she is willing to share it, and I will continue to root for Nella and hope for the best for her. Her and her family are so lucky to have each other.

Please. Can we drop the fight about Marsha? This is not what Kelle would want! I read her blog everyday…and this story was meant to be about a blessing…her blessing…her nella. Her girls are beautiful…and she chooses to take on life with amazing spirit! She inspires me to be more creative with my own kids. Lets take thefocus off the nasty comment, and put it where it belongs. Suck the marrow out of life ! You rock Kelle!! Positivity people!! Positivity!!!

I don’t think it’s helpful to respond in a nasty way to someone who is being offensive; however, sometimes we need to be brave and have the hard conversations. I can’t speak for Kelle–I don’t know what she would want because I don’t personally know her–but it seems to me that she has been open and honest about her feelings from the beginning, even if they haven’t always been goodness and light. Nella’s birth story is so inspiring because it’s REAL. Positivity is great and I love it when things turn out well, but it’s also important to acknowledge when they don’t.

We need to be *aware* of certain attitudes and stereotypes to be able to address them. We need to ask ourselves “why?” when someone is in an angry, bitter place. I believe trying to understand where they are coming from and what’s going on with them–where they are “at”– can help guide us to a conversation that may open hearts and minds. I really believe that.

Understanding leads to compassion, and we could all use a little more of that.

“I’m just saying, balance the story with reality, so when folks are faced with these issues, they see the WHOLE picture of what can happen” Why do that? Do you think people are unaware that life can be rotten for some?————– Yes. As someone who’s been around a long time, yes. The media in particular, handles serious situations inappropriately. This women has a long road ahead of her, and God bless her for her effort. She’s fighting the good fight. but I have yet to see one strong comprehensive story on raising a child, all the way into adulthood, who has Downs, or the many defects that have had children succumb to, good friend’s children and what becomes of those parents? I agree, some balance, maybe not today, but in a week or month or so, would be appropriate so folks get a clear idea of the spectrum of what parents of children with defects actually can experience.

Oh my goodness. My most recent post has been edited to remove the first sentence, which was merely an observation that some comments had been deleted. Who is doing this? It is unethical–please stop.

Thank you for your kind condolences, Grannynosbest. I do find it inspirational to hear stories of people surviving difficult times and situations, and while things are very hard right now, I keep hoping that at some point I can put the pieces of my shattered heart back together and experience joy again. I have hope….I have hope. I think that sometimes that is what these “feel good” stories are meant to inspire. Hope. I merely wanted to point out that it’s a process getting through a challenge, and it’s important to honor that process. I’m not saying that Kelle hasn’t done that in sharing her story. Please, everyone, be gentle with the people who aren’t on the other side yet.

I also want to amicably point out that I don’t see my child as having had a “defect.” She was beautiful and perfect and unique. I’m not interested in comparing her with other children–she was who she was, and I miss her and want her back every single minute of every single day. And even though losing her is the worst thing that has ever happened to me, I wouldn’t ever wish to erase her existence. I’m so grateful that I got to feel her kicking, that I was able to see her sucking her thumb on the ultrasound, that I got to experience her reacting to the sound of her daddy’s voice, that I got to hold her and touch her, and that my loving arms and my breath on her sweet little face were the last things she experienced before she died. My lovely, loved girl. I would never wish her away–I just wish I had more time with her, and would face anything to be able to have that. There might have been challenges–no, there definitely would have been challenges–but there always are. For everyone.

My three year old DS child is delightful, bright, loving, minus all the miserly monster qualities of typical kids. I got the prize kid, and all the other mommies got trouble. My days are sweetness and light, hugs and pure delight with fresh warm blankets from the laundry, and lots of whipped cream on strawberries for the snack of your life. Everything small is a bonus in my world, and I look forward to getting up every miserable day, because there’s joy in it with Maia. I don’t know what life was like before her, she’s wiped all my sad memories clean. Pure joy and love is her superpower, what’s yours?

ack, forgive me. I read too fast – I think it is missingmolly that lost a baby. I thought the post was below/not above the name. SORRY! I said Redgirl, but I meant to say bless your heart, missingmolly. life is hard. beautiful but damn hard. Sarah in NYC

I am so sorry for your daughter’s down syndrome. This is incredically sad. I almost cried when I read it. To think of a mother who did want her own daughter – of course, I’m happy to hear you accept her now and that no one makes fun of her. I think it’s amazing how people can over come challenges that God throws at them with no warning at all. I think it’s amazing, from the pictures she looks like a normal two year old. If anything was wrong, you couldn’t tell that there was. I think that it’s just awesome her sister loves her. I know that when she grows up, she will be a terrific person, she has a great rolemodel from the sound of it.