Wednesday, January 25, 2012

My greatest fear

About three weeks ago through Facebook I met a mom in Maine, who has identical twin boys with Fragile X -- just like me.

And of course, any mom with children with Fragile X is like a sister to me.

So to find another Fragile X mom with identical twins is really, really special for me.  I belong to the local multiples club and that's been fantastic.  Any mom of twins, triplets or more will tell you there's nothing like the camaraderie we find amongst each other.

That is maybe even more true with the Fragile X moms.  We have a thread of likeness strung through us that we don't find with other people.

So to find both of those in one person is like Christmas Day for me.  I run and cling (well, figuratively) to this person, because I think this might be the one person, among all the others, whose life really will be JUST like mine.  I know it's a little illogical, but I'm attracted to people with the multiples/Fragile X combination.  I beeline for them.  Can't help it.

Her name was Sara, and her identical twin boys with Fragile X are 13 years old.  I looked through all her pictures of them -- they are so gorgeous!  Two little blondies, looking just alike, sitting together, making faces at the camera, wearing their matching glasses.  With something of that Fragile X look in their faces that we FX moms have all come to recognize, and adore.

We exchanged several emails, chatting about our boys.  We shared pictures and stories about our lives.  I asked her if she'd be coming to the International Fragile X Conference in Miami next July, and she didn't think she'd make it.  But we hoped we'd get to meet in person someday.  I felt such a great connection to her.

Which is why it came as such a heart-skipping shock to find out she'd passed away, only about two weeks after we met.

Any death of a young person, a young mother at that, is a horrible tragedy.  Nobody wants to orphan their children.

When your children have special needs, you can multiple that by 10.  Leaving my boys, suddenly, like that?  It's my greatest fear, and I bet I share that with most of the moms of children with special needs.

We know we are our childrens' best advocates.  Supporters.  Teachers.  Cheerleaders.  Caretakers.  Butt-wipers.  Nobody is going to do it with the fervor and love and intensity that we do.  There is no substitute for the Momma.

Of course, I don't want to leave Aliza either.  But it's different with her.  She's neurotypical, to use the current politically correct word.  She's only 9, but she's street-smart.  The boys won't be so street-smart.  I try to focus on the potential the boys have rather than the limitations, but reality sometimes rears its ugly head.  The reality is, they are going to need their mom in more ways than Aliza will, and for a lot longer.

We reluctantly let go of our special childrens' hands to let them go to school.  We don't very often have babysitters for our kids who aren't grandparents or other relatives.  As much as we might like to avoid the words "normal" and "different," our kids just aren't like other peoples' kids.  They are vulnerable.  They really need us.  Nobody is going to provide care as well as we can.  (And when I say "we," I mean "I."  But I'm pretty sure I'm not the only one.)

Sara, I'm sorry I didn't get to know you better.  I think often of the husband and family you left behind.  I think often of your sweet little twin boys.  And I pray that God will provide an advocate for them as devoted as their mother was.


amoryg said...

I got the chills reading this. I'm so sorry for her family. And I'm so sorry for your loss too as I'm sure you feel as you lost a huge support in your life.

Becky4651 said...

Thank you for the beautiful tribute to my sister Sara and her boys Coleton and Cody ... nearly a month later and we are still in shock and disbelief ..

Anonymous said...

I miss my aunt every day and I see the boys when they come to my work and it breaks my heart every time she loved them more than words can describe she only got to meet my daughter twice but the look in her eyes is something ill never forget she loved babies and kids so much she was and awesome aunt and mom. Thank u so much for sharing ur story

Anonymous said...

I miss my auntie every day. I see the boys when they come to my work place with their workers and they are so happy to be getting subway. but it breaks my heart to see them. she loved her boys so much. She got to meet my daughter only twice but the look in her eyes is something ill never forget she loved all children. she was an awesome aunt and mom. Thank for sharing ur story.


#youmightbeanautismparentif 2012 in review 9/11 memories ABA therapy Acceptance acronyms advocacy affection aggression AJ Aliza Aliza the playwright All I really need to know... Alphabitty Moments American Girl Ann Coulter antibullying anxiety anxiety in parents of children with special needs apple orchard apps for autism AppSmitten Arbaclofen Arbitrary Thoughts ARC autism autism brushing autism portrayed in TV shows Autism Shines awareness backyard band baseball bath toys beds behavior problems being tall Birthday Boys biting blog change blog hop blogging books bottles brushing bubbles Burnsville Fire Muster bus Cabin Fever in Minnesota candy Carly Fleischmann Carly's Voice cats cats and dogs chewys Chicago childcare for special needs children childhood Children's Museum chocolate Christmas Church circumin clinical trials Clonidine CNN Hero of 2011 coffee communication comparisons computer Conference cost of special education Courage Center Curcumin daddy dance dance competition dance moms Dental surgery dentist developmental milestones diagnosis diapers Diego Disability Day dogs Dolphin Tale Doomsday Preparation Dora Doritos drug trials DVD player early intervention earrings Easter ECSE Parent Retreat electronic gadgets electronics Everything I need to know... Evil Overlord fall falling asleep at school families family fashion fear Featured Feel Good Friday field trip fireworks first day of school Flash Gordon Food Chronicles food issues in Fragile X and autistic children forms forts Fragile Face of God Fragile X Fragile X advocate Fragile X and autism Fragile X Awareness Day Fragile X carriers Fragile X in the news Fragile X presentation Fragile X statistics Fragile X Writers friends fundraiser for Fragile X funniest Funny Gabrielle Giffords Galveston games getting carsick Girls' Night Out Giving Spirit glasses global warming going home Good Morning Great Quotes guest blogs guest post haircuts Halloween hearing test Heaven is for Real hippotherapy holidays Holland Holly home life homework hotel hugging human behavior hyperactivity IEP Meeting IEPs in the news inclusion inspiration integration iPad iPad apps iPad apps for autism IQ testing Jack Jablonski January First Joke journal entry kids with Fragile X and animals Kindergarten Kindle kisses language study learning to talk leaves lemonade stand Lily Little Einsteins losing teeth Mad Gab makeup mall Mall of America marcia braden McDonalds media sensationalization medications Melatonin Miami MIND Institute Minnesota Bloggers Conference minocycline Miracle League monkeys mosquito bites Mother's Day movies MVMOM Used Clothing and Equipment Sale nail trimming names naughtiness neighbors nicknames nightmares normal off topic one thing leads to another online dating Operation Beautiful oral sensory orphan drug act other bloggers Our Wedding outside overstimulation panic attacks parade parental stress Parenthood park Partners in Policymaking penicillin people with disabilities pets pharmacy fun photography Photoshop picnic Pictures pinching pink shirt Pinterest playing outside playing with toys poem politics poop potty training Presents protecting autistic children rash reading to kids research Retreat riding a bike Robin Williams Roger Ebert routine RSS feed RUSH University San Diego Sandy Hook Elementary Santa schedules school school bus school notes school pictures screaming self image self-checkouts sensory Seroquel siblings with developmental delays sick kids sippy cups sleep smile snow pictures Snowstorm social situations speaking of the unspeakable special education special education evaluation special needs kids special needs parents Special Needs Ryan Gosling Special Olympics spelling spoon feeding spring break staying positive stimming Strep STX209 Stylish Blog Award suicide summer Sunday School Sundays sunshine survival mode swimming talking talking to kindergarteners Target teacher's aides Teeth brushing Tegretol Temple Grandin Ten Commandments textbook case of Fragile X thankful thanksgiving that window/mirror thing The Autism Store The R Word the rapid passage of time The Right Things to say to parents of special needs children The Santa Experience the Shedd Aquarium The Twin Thing The Wiggles therapeutic horseback riding therapy This is Autism topless trampoline traveling with special needs children TV twins with special needs Twitter typical Fragile X characteristics typical kids typing vacation Vacation Bible School video games videos volunteering Waisman Center water play way-back-Wednesday What I've Learned What's your song? when a special needs parent dies Wiggles Wii games Winner Winner Chicken Dinner winter wonder Wonder Pets Wordful Wednesday Wordless Wednesday Words of Wisdom World Autism Awareness Day YMCA You Tube Zack Zoloft zoo animals

Fragile X Blogs