Photograph courtesy of Rick Guidotti of Positive Exposure.
Poetry from the Heart  

Susan Moran, mother to Irene McKay who has 18p-, wrote these beautiful poems about life with her daughter...

Different is Love

Different is learning love is like a rainbow:

Full of colors and joy-
Full of experiences that upon memory are as colorful as a rainbow,
Full of expectations that upon collaboration are as colorful as a rainbow;
even though the collaboration changes the expectations beyond imagining sometimes,
Full of joy for all of the differences that no one could have predicted and yes, these joys are as colorful as a rainbow.
Different is learning love is like a rainbow, very colorful and full of mystery and joy.

Kaleidoscope

My journey with my darling daughter is like a kaleidoscope. It is a mixture of emotions at levels never before experienced or even imagined. She has taught me that love is joy. Different levels of joy and excitement over “small” things that others take for granted.

These joys occur on HER time table, not on the schedule from some developmental chart or some doctor or teacher’s notion of when is “right” for it to occur.

Love is those first independent steps that we had to wait an “extra year and a few months” for her to take.

Love is the pride that beams from every fiber of her being and through her soul when she “gets it” whatever the latest it is!

Love is the sheer, pure joy when my darling finally, after years of trying, jumps over that yellow bar at PT.

Love is knowing when to whoop and holler at her success and when to celebrate quietly so as not to interrupt the moment for her.

This kaleidoscope love of mine is wonderful. It is so full of color that changes and mixes and is constantly in flux.

I am blessed to have a kaleidoscope love child. Are you?

 

Susan Moran, mother to Irene McKay who has 18p-, wrote these beautiful poems about life with her daughter...

Different is Love

Different is learning love is like a rainbow:

Full of colors and joy-
Full of experiences that upon memory are as colorful as a rainbow,
Full of expectations that upon collaboration are as colorful as a rainbow;
even though the collaboration changes the expectations beyond imagining sometimes,
Full of joy for all of the differences that no one could have predicted and yes, these joys are as colorful as a rainbow.
Different is learning love is like a rainbow, very colorful and full of mystery and joy.

Kaleidoscope

My journey with my darling daughter is like a kaleidoscope. It is a mixture of emotions at levels never before experienced or even imagined. She has taught me that love is joy. Different levels of joy and excitement over “small” things that others take for granted.

These joys occur on HER time table, not on the schedule from some developmental chart or some doctor or teacher’s notion of when is “right” for it to occur.

Love is those first independent steps that we had to wait an “extra year and a few months” for her to take.

Love is the pride that beams from every fiber of her being and through her soul when she “gets it” whatever the latest it is!

Love is the sheer, pure joy when my darling finally, after years of trying, jumps over that yellow bar at PT.

Love is knowing when to whoop and holler at her success and when to celebrate quietly so as not to interrupt the moment for her.

This kaleidoscope love of mine is wonderful. It is so full of color that changes and mixes and is constantly in flux.

I am blessed to have a kaleidoscope love child. Are you?

 



Who We Are  


Life with a Chromosome 18 Condition  

On this page, you can hear about the hopes, fears, and advice of some of our Registry families.  We invite you to watch these videos and learn about life with a chromosome 18 condition.

On this page, you can hear about the hopes, fears, and advice of some of our Registry families.  We invite you to watch these videos and learn about life with a chromosome 18 condition.



Our Hopes  

Families share their hopes for the future in the following video:

Families share their hopes for the future in the following video:



Our Fears  

Families talk about their fears:

Families talk about their fears:



What You Should Know  

Registry members share what you should know about life with a chromosome 18 change:

Registry members share what you should know about life with a chromosome 18 change:



Our Advice  

Families give their final words of advice:

Families give their final words of advice:



 

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