30.1.15

A Year of Delight-- Journeying with a Down Syndrome Diagnosis


Our journey has been such a beautiful experience. I want to share in hopes that perhaps someone receiving this diagnosis will take a step back and breath and be open minded. 

It's common knowledge amidst the families who are immersed in this life long journey that %90+  children that are diagnosed with Down Syndrome during prenatal testing are aborted. When I look at my daughter and the joy she has brought to our family, I can't imagine her not being in our lives.
Here I thought I would answer some common questions I have encountered over the last year.
 Has she changed the dynamic of our family? She's brought out good in us all. She's brought us patience and kindness. She's made us giggle. She's helped the older kids be more accepting. And she's required us to have another chair at the table. Aside from that, nothing much has changed.

How is she at keeping up with milestones?
Lisette has not had too much trouble with staying close behind other children her age in keeping up with milestones. Things may be a little slower in coming, but she gets there in her own time. When she decides she wants to do something, she just does it! It's just like with out in the (gasp) real world, where people work at different rates and one person might take a little longer to get to the finish line than another person. It's not bad. It's just different. And different is ok.


Does Lisette need any special medical care? Only when she is sick. Her heart defects have corrected themselves over time. Were there moments of uncertainty? Surely. But education and understanding are key to successful treatment. 
She does do physical therapy and occupational therapies to help her meet milestones. But really, this is not much different than one of your children needing tutoring for a particular subject in school a few times a week.
 

Do we get stared at? This is a question that has come up on a few occasions.  The answer is, "Yes, we get stared at." Sometimes, perhaps due to someone noticing that she has Down syndrome. But on most occasions, it's because I am often out on my own with four children in tow and that is somewhat of an anomaly these days. Or it could be because my jeans are too tight. Or my 5 year old dressed himself, and that is oftentimes something really special to partake of.

 Is she crawling/walking/talking/playing? We're getting there! She's bear-crawling and standing, she's coo-ing, she's giggling a little bit, she's understanding signs, and she has favorite toys. 

 Do I worry about the future? Sometimes. Most often, no. I'm raising all my kids to love and care for each other, to be friends to one another and to lift one another up when they need help. Some days they fight like cats and dogs, and other times I see them helping one another when they recognize that an extra boost is needed. Rather than seeing one another as competition, my hope is that they will each be able to be a confidant to their other siblings. Likewise, my hope is that she will be able to do that for them as well. It's also important to remember that she can do whatever she wants. She has proven that already with her milestones. She will have times where we wait patiently, and work her through therapy to build the skills to do something, but until she makes the decision to do something herself all we can do is wait and be patient. And then out of the blue she surprises us all. I imagine that when she is older she will do things similarly, and surprise us with her talent and skill. The future is full of possibility!
  
Along those lines, I don't hold anything back with presenting possibilities to her. I take her everywhere. I want her to experience everything. There is no reason to put limitations on her. Who am I to know whether she may be a great photographer, or teacher, or inventor. 
 

 How severe is her Down syndrome? This is a question I have gotten so often and it takes me a moment to really understand what the person is asking. You either have an extra chromosome, or you don't. She does. What I've come to understand is that people are really asking, "How disabled is she?" There's not really any way to know to what degree she will be affected in every area of her life. We take a day at a time, and help her along when she needs help. Not one person in the family, including herself, has been negatively affected by any degree of effort we have had to put in to helping her along when she needs it. It's been no more so than when my 5 year old asks me to tie his shoes, or my 12 year old asks me for a ride to some activity.

In fact, there is no shortage of people willing and eager to come to her assistance or rescue when she lets out the slightest hint of a whimper. On more than a few occasions, I've had to put my foot down and say, "Leave her be! She'll figure it out!" And she does.


 What's she like? Is she like the other kids? She's mostly quiet. But she can also sing to the high heavens, especially if we go to church. She'll be singing her tune louder than anyone else! She doesn't cry much, but when she does--> you pay attention. She's very observant. She likes to watch people. If she is watching you, and you look at her she will smile at you with a big whole-face-smile. Her eyes smile at you. It's the greatest thing.


"She's so tiny!"
She is tiny. And I love it. I can easily carry her around. She is super fun to shop for. Good things come in small packages. And maybe she takes after her mama-- I'm pretty small, also. My three older kids are all tall and thin like their dad.

 

What's it like having a child with Down syndrome?
She's opened my eyes to a loving and supportive community that I previously wasn't familiar with. Lisette is joyful, and you can't help but be happy when you're around her. She's the easiest baby. I feel like I won the baby lottery! :)
The biggest struggle we have faced is acceptance and understanding from some who are not familiar with what Down syndrome is. But even then, it's just a matter of taking a few minutes to explain if they are open minded.
For myself, I can't wait to see all that the future holds for our family. The opportunities are limitless.
If you've received a diagnosis of Down syndrome, don't be afraid. There are way scarier things in the world to deal with. You've been blessed, you will see, with a sweet child that will make your heart swell and grow each day with love. You'll get so excited over milestones conquered and how this child sees the world so simply and joyfully. I can't promise every single moment will feel that way because you'll still deal with diaper blow-outs and burp-up, and perhaps some health issues. But, all that will be nothing compared to the love and joy you will experience from knowing this little soul. Trust me. You're in for a treat. 

1 comment:

  1. I love how you documented her first year. She's a beautiful little one.

    ReplyDelete

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