Guest Blogger: Jenny of The Fisch Tank

 

“When you don’t have typical twins”

I have anything but typical twins.

Yes, they are individuals, and yes, we treat each of them differently. But for me and lots of other families, one of my twins is typical and one of my twins is not – in a much larger sense.

In our case, one of my twins, Cici, has a severe brain injury due to a choking accident when she was 11 months old. That means one twin, Penny, runs and jumps and eats and roughhouses with her older brother, Max. Cici is in a wheelchair, fed through a feeding tube, legally blind, and without too much control of her body to communicate with us or even move on her own. We also struggle with medical issues, like seizures, scoliosis, breathing issues and oxygen, and we pursue various types of traditional and alternative therapies to help the brain heal and for her to develop function and health in her body.

Needless to say, sometimes I don’t feel like I have twins at all. Cici really functions at close to a newborn level. Penny is a typical two year old, and Max is a typical four year old. So, even though Penny and Cici are twins (identical, on top of that), they really interact with each other like siblings. The day of the accident, I really feel as though we lost the “twins” in the traditional sense. I may not ever see them grow up on the same developmental level. I may never see them “play tricks” on their teachers with their identical-ness. I may never have the trouble of potty training two kids at one time or managing two of each kind of toy or struggle with paying two preschool tuition’s or saving for two college educations.

There are days I’m so very sad about this. I was really looking forward to raising twins in the “typical” way. I’m still a member of our local twins group, and it always makes me a little bit sad to watch all the twins run around and interact with each other, always having a playmate. And, it’s very obvious to me that I am the only one who has a special needs twin in our group. The sad thing is, that I know I’m not the only one out there. Since the accident, I have made contact with lots of other twin moms, where one has down syndrome, or one has a seizure disorder, or one has brain damage from an infection, or one has long term effects from a premature birth, or other various syndromes – including developmental delays or somewhere on the autism spectrum. But, like me, they don’t feel like they have twins most of the time either, and therefore, don’t feel like they belong in a twins group. It’s probably, that, like me, they see in all the other kids what they don’t have. Typical kids. Beyond that. The “twin connection” that twins have and that I may never get to see in my own kids. We special needs moms see typical kids all over the place, but typical twins strike a different chord with me. It’s what I had, and in an instant, I lost.

But I keep going to the meetings. I keep participating. I want other special needs moms to feel welcome in our group. I want us to be able to talk about physical or speech or cognitive delay with understanding and openness. I want to be part of a community outside the special needs world. I would like to think that my girls still have a special bond, after all, they look exactly alike! And, I still need double the clothes in a size – I still have two kids to clothe! Max and Penny have learned how to play with Cici, being gentle and showing her things and talking to her and waiting for her to respond. They also act like normal siblings, they steal her toys, and touch her too hard, and sometimes poke her in the eye by accident. They squabble when she gets too much attention, but they are also fiercely protective of her, and they really want to include her in our family. And I think this is something that is valuable for everyone, kids and adults alike, to see – how to explain and talk about disability with dignity and integrity, without avoidance and not with hushed whispers and stares. They’re still twins, even if it seems like they’re more like siblings that were born on the same day, and that’s still special.

So, come out, come out, wherever you are! If you don’t have typical twins, or even if you do, how do you feel about having twins?

~Jenny

Follow me (and read the whole big ugly story) at The Fisch Tank (http://colofisch.blogspot.com)

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18 comments

  1. I, like you, sometimes feel like my boys are not twins either because they are at such different places developmentally. Thank you for telling your story.

  2. You are an amazing Momma and have a beautiful and strong family. You kids are darling, I wish you all the best 🙂

  3. I'm one of the types you mentioned — my twin boy has suffered the effects of prematurity much more than his sister. Since they've turned 3, I find I have more in common w/ other parents of micropreemies than w/ other parents of multiples.

    I like that you do have your girls dressed alike in the photos. That's one of the fun things about having twins, and I'm glad you still get to do it.

    Some of the adults I respect the most in my day-to-day life have siblings with major disabilities. I hope you find the same with your children — that they all benefit from the experience of growing up together.

  4. Awesome for having Jenny guest blog! As you know, Jenny, I totally admire you and Cici the rest of your family! I think awareness is key and hope that more and more gets out there!

  5. I just read this blog for the first time a few days ago. Being a twin mom who has loved the IDEA of my identical twin girls from the start (playing together, being best friends, and yes, looking alike), it breaks my heart to know that Jenny may not get to see that for her girls. Hopefully, as they grow, some of that "twin bond" will come through. I've enjoyed catching up on this story, and hope to read more!

  6. MandyE (Twin Trials and Triumphs)

    Thank you for sharing your story. In partnership with another MoM, we have recently launched a Mothers of Multiples club in our area. Reading your story has made me think about ways to structure the club to try to be as inclusive as possible.

    Best of luck to you and your beautiful family!

  7. Thanks for the honesty. It helps me…even if my gang seems "typical" on the outside.

  8. YAY Jenny! Thanks for posting with such honesty….inviting others to a site where so many families seem 'typical'. Little Cici has a lot to teach the world 🙂

    XO-
    Heather

  9. Your post was inspiring and your family is beautiful!

  10. You know I am a fan of yours. This was a great post. The world definitely should know the struggles and triumphs of a family as wonderful as yours!

  11. Your family is gorgeous, and you guys have done so well coping with the ups and downs. You are an amazing person, and mother!

  12. Thank you for sharing your story.

  13. Holli (and Mark)

    Thank you for sharing your beautiful family. I have twin boys, both born severely premature and one with spina bifida. I very recently joined a local mothers of twins club and am feeling a little apprehensive about meeting all the families with "typically" developing twins. I'm reading your blog now and you are such an inspiration and your children are so lucky to have you as their mom. Blessings.
    ourdoubleblessings.blogspot.com

  14. Hi. I too am a Mom of one typical twin and one with special needs. My Ben has cerebral palsy. I am a pretty active member in our local twin club and understand completely what you say in your post here. Just recently, 2 other twin mom's in our group have had a twin diagnosed with CP. Although I wish they didn't have to deal twith this too, it's nice to have other mom's with this in common. I'm hoping that we can all support each other through this.

  15. Your family is beautiful.

  16. I am so moved by your beautiful family! I'm so glad to have found your blog. I am an identical twin (and have identical twin girls) and I don't doubt for a second that your girls will always share an amazing bond. Your girls are so precious and are such miracles.

  17. Thanks for sharing! Love to you.

  18. Thanks for sharing your story.

    We have atypical twins in that one is normal for their proper age and big if we adjust and the other is on the 10th percentile for adjusted age, in other words, TINY. She had eating issues for the first 3 months..

    So we get the "how old's that one and how old's this one" comments – drives me nuts – but now I will stop moaning and whinging about that since you have some REAL atypical twins.

    Your family is beautiful!

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