Tuesday, October 22, 2013

Why Your Language Matters

Let's say you and I are out to lunch and a very thin woman walks by.  I make a disgusted face and say to you, "Ugh, she is just CANCEROUS."  I think you would be a little taken aback at my harshness.  Let's say a young man walks by the table and trips on something on the floor and I yell, "Nice walking, Palsy!"  You'd probably be looking for a place to hide.  But let's say you are telling a funny story about something really stupid you did on a date and I go, "OMG, you are such a RETARD!"  Most people would probably just laugh harder.  This is what people who are diagnosed with mental retardation (and their families) face on a daily basis in our society.  While it would be considered very insensitive to make fun of someone with cancer or ALS or MS, it is considered perfectly acceptable to use the medical diagnosis of mental retardation as a synonym for doing something stupid.

The word "Retard" (and permutations such as "Fucktard" and "Libtard") are prevalent in our society.  There are Facebook groups called "Retarded Mom", "Americans Against Libtards" and "Fucktards Unite".  When special needs advocates have petitioned Facebook to remove those groups as hate speech, the response from the Facebook Quality Control Department is, "Your complaint has been reviewed and no violation has been found."  As in: IT'S PERFECTLY ACCEPTABLE to compare someone with political viewpoints that differ from your own with someone who has a medical condition resulting in a lowered IQ and developmental delays.  GO RIGHT AHEAD!  Nothing wrong with posting pictures of people with average intelligence doing stupid things with the heading "Retards."  I have seen everyone from nurses to lawyers to special education teachers using these words.

I have actually seen people use the argument that people with mental retardation don't know enough to be insulted, so who are they hurting?  This point of view is so ignorant, I don't even know where to start.  Clearly, there are millions of people who are classified as mentally retarded (or "intellectually delayed", as is the preferred term these days.  These are people whose IQ falls below 70) who are perfectly capable of carrying on normal conversations, caring for themselves and holding jobs.  These people, such as actress Lauren Potter of Glee, who was born with Down Syndrome, will tell you flat out that using these words HURTS THEIR FEELINGS.  See for yourself:

Shouldn't that be enough??  If it's not, I will tell you that for those of us whose family members are, in fact, blessedly ignorant of the unkindness in the world, it is heartbreaking to have our innocent loved ones constantly degraded and dehumanized by having their medical diagnosis turned into fodder for taunts and jeers.  When you freely use language that makes a group of people seem less than human, then that is the way society as a whole learns to treat them.  It is why I had an aide to a congressman on Capitol Hill ask me how I can justify all of the public resources put into caring for people with special needs when they will never grow up to be tax payers.  "A society is judged by how it treats its most vulnerable" - Gandhi.  And I, for one, will be judging YOU by the same measure.

Here is the bottom line: If you use the "N" word, you cannot expect black people to want to have anything to do with you.  If you use the "F" word, you cannot expect gay people to want to have anything to do with you.  And if you use the "R" word, in any of its iterations, do not expect my child or myself to want to have anything to do with you.  You have been put on notice.

"That which is said, cannot be unsaid" - Danish Proverb

My reasons for always minding my language

Monday, October 7, 2013

Why I'm a Pinterest Mom

I get it.  I get all the Pinterest jokes.  I totally agree it is causing many of us already-stressed-out moms to feel like we are in constant competition to throw the perfect birthday party, make the perfect school snack and take the perfect family photo.

Hey look, I'm not saying I showered, and keeping MY kid alive is NO JOKE!

And yet, I will totally own the fact that I am a Pinterest mom.  I'm that lady.  I threw my daughter, Elyse, a superhero 6th birthday party and made everything by hand:

I create whimsical Halloween costumes:

I make occasion-appropriate snacks:

I do not do this to bolster my flagging ego or to one-up my fellow moms.  I do this because, as a special needs mom, there are a lot of "mom" things I am NOT.  I am not a "let's-join-the-travelling-soccer-team-and-spend-hours-every-week-on-the-road" mom.  I am not a "do-every-activity-you-want-as-long-as-you-get-your-schoolwork-done" mom.  I am not a "playdate-every-weekend" mom.  I am not a "spontaneous-family-trip" mom (hell, I'm not even a "well-planned-out-vacation" mom).  I am not a "spectator-at-every-event" mom.  I am not even, depending on Anabelle's health, a "tuck-you-into-bed-every-night" mom.  I have forgotten to send my kid to school in a jersey on sports day, I have missed sign-ups for things, I have said no to classes Elyse wants to take because I cannot possibly get her there every week, I have skipped bath time several days in a row from sheer lack of hours in the day.

When my second daughter was born profoundly disabled by the rare neurological disorder lissencephaly, one of my first and biggest concerns was how this was going to impact the life of my typical, then almost-3-year-old.  How was I going to give her everything I wanted to give?  How was I going to provide the kind of childhood I wanted her to experience?  Had I, in the attempt to provide her with a life-long companion, instead given her a life-long burden??  

The thing many people don't realize about being a special needs parent is that, for those of us who also have typical kids, it is usually THEIR well-being and future that cause us the greatest heartache.  These are the kids who can see what is going on.  Who will feel the taunts of schoolmates over having a special needs sibling.  Who will miss out on vacations and field trips and dance class because there is neither the time nor the money to provide those things.  Not to mention, who miss out on having their parent be involved in their life.  We are the family with only one parent in the stands at sporting events, one parent in the audience at the dance recital.  And I know we are blocking your view with our cameras videotaping every detail, but this is the only way the other parent gets to experience this.  Because it is too hot to bring the special needs kid to the ballpark, and the auditorium is not wheelchair accessible.  Or, as in Anabelle's case, she is so susceptible to getting ill that it just isn't safe for her to be in a crowd (she has, numerous times, ended up hospitalized over what to the rest of us is a mere cold), and her parents are the only ones trained to care for her needs.  There are a lot of charities and organizations out there designed to give the special needs child what they need, but the truth is, it is the REST of the family that usually goes without.  Anabelle has never wanted for a thing in her short life.  It is Elyse who never has two parents at her side on outings, or may never get that trip to Disney World she so desperately wants.  My typical child breaks my heart much more frequently than my special needs child.  It is for Elyse that I have to get really creative in the ways I go about creating memories, as the needs of my second child are restrictive to the freedom of movement that most parents of young children are used to in their lifestyle.   
When Anabelle was 6 months old, a friend a sent me an "invitation" to join Pinterest.  It was like opening the golden gates to never-ending possibilities for the trapped-at-home mom I so often was now!  Because while I have always considered myself passably crafty, what I am NOT is wildly creative.  And here it was: the ultimate guide to the perfect childhood!  (Okay, I admit that is overstating it a little bit, but I was a desperate, terrified, newly-inducted special needs mom with a bored, over-active toddler on my hands).  Endless ideas with step-by-step instructions.  I CAN DO THIS!!

It can be really hard not having the time to be the mom I would like to be.  My typical child does have to pay the price for having a special needs sibling.  But the one thing I DO do?  I spend a lot of time at home. Anabelle's fragile health has her living in a virtual bubble a lot of the time.  I cannot run Elyse around doing fun activities and having experiences outside the home.  What I CAN do is try to create fun and memories INSIDE the home. Elyse helps me with most of my Pinterest-inspired activities, it allows us to bond and express our creative energy.  It allows me to contribute something meaningful to her childhood beyond hospitals and therapists and "hold the suction wand for a minute".

Elyse-designed headbands

So please, don't take it as a challenge when Elyse and I make her teacher's end-of-the-year gift:

I'm just using what I have so my daughter has one thing about which she can say, "Hey, MY mom does that!"

Tuesday, October 1, 2013


Another beautiful Microcrphaly Awareness Day come and gone...

My two favorite stories of the day:

1. An old friend of mine does not feel comfortable allowing her gorgeous twin daughters to appear on social media.  She made an exception to let them show their support in yellow for micro day.  I was so touched (and btw, that is the only photo you will not see republished here, as I respect her concerns and will not spread it further than my Facebook wall in a public format)

2. My parents recent sold their home of 26 years and purchased a downsize.  They settled on the new house less than a week ago, and have not even moved in yet, as they are having some renovations done first.  Yet, in meeting with the new neighbors, Anabelle and Micro Day came up in conversation.  The new neighbors got in touch with Buttons and Bows (exclusive provider of the "Ana-bow":  https://www.facebook.com/buttonsandbows181) and ordered up enough for the whole neighborhood.  Spread awareness, made a donation to Anabelle's Wish (www.anabelleswish.org) and welcomed the new neighbors in one gesture.  Thank you.

Thank you to everyone who rocked the yellow yesterday!  These are all of the photos in which I was tagged:

Monday, September 30, 2013

Small Miracles

Micro Day is here again!  Thank you to my friend, Jill, for this beautiful graphic created for Anabelle and her friends.  We have a bunch of new micro friends to introduce you to this year, and the exciting thing is that all of these kids are new friends we found living right here in the Philadelphia area.  Our community is growing tighter, families who live with this disorder are finding each other and supporting each other, and our friends and families are helping us spread the word every year!

Anabelle Rose is holding steady at a head circumference of 15 3/4", but the curls are fuller and boingier than ever!

Our first new friend to introduce you to is Will.  Can you believe we found Will living right here in our own town??  AND he has a sister who is also in first grade, like Elyse!  The micro world gets smaller every year.

Will is a big helper to his mama.  He loves cleaning up the dishes...and everything else.  Dirty dishes, dog food bowl, toys, keys, everything goes straight into the sink!  Will is a quick crawler and gets super mad when he isn't allowed to climb the steps.  Will is mostly tube fed, but does eat some orally, and loves to drink pickle juice!  His exciting new accomplishment is that he now opens his hand to pet his kitty, instead of pounding her back with a closed fist.  This is awesome dexterity!  Will is also making great progress finally keeping some weight on (difficulty maintaining weight is a common problem among micro kiddos).  Yay Will!

Miss Avery is total personality!  She is three, just like Anabelle, and recently started attending school.

You should see Avery get around in her gait trainer!  Girl can MOVE!  She loves classical music, just like Anabelle, but you can also find her rockin' out to reggae or Beastie Boys.  She loves bath time and swinging and hates having her head touched (so much for cute hairdos!).  Avery and Anabelle have very similar wardrobes, as their daddies are both Star Wars fanatics (there's a lot of Yoda).

Sweet Ella and her family just moved to a new house even closer to us.  She has a big sister the same age as Elyse, and the two of them were like peas and carrots when we got them together :)

Miss Ella is very chatty.  She loves Elmo and can say his name.  She mimics her grandmother's laugh and calls her "Haha".  She loves monkeys, owls, music and kisses.  When Ella was little, she had very bad Infantile Spasms (a form of seizures), and was medicated for them.  It was amazing the transformation that occurred when the spasms stopped and the drugs were weaned.  All of a sudden, all this personality came out!!  One of the terrible things about this life is the terrible amount of serious medications we need to keep our kids on to keep them healthy.  They can make them drowsy or doped, and we never know how much they are holding them back until we can wean them off.  Ella's mommy runs a foundation called "Sockies for Sick Kiddies" (https://www.facebook.com/SockiesForSickies), in which she sends sock monkeys to kids who are sick or have a disorder.  Please check them out and see how you can help!

Julia (aka Sweet Bird), is such a little joy!  Sweet little face with the signature Cephaly Cheeks and her adorable pigtails!

Julia has had an exciting year.  She started a new school and her parents are thrilled with the progress she has been making.  She has been getting around better and better in her walker, and has started reaching out for toys (even if her aim is sometimes a little off).  Like with my girls, she and her brother Max are definite soul mates.  She responds to him better than to anyone else.  He has even been recording his voice for use in her therapies.  When she hears Brother, she smiles and giggles.  She's apparently a Yankees fan (we'll have to forgive her, she was born in New York), and always tries to swipe the Yankees cap off her brother's head.  She's a Renaissance girl, being partial to both princesses and light sabers.  She loves swinging and kisses.  Just like Anabelle, she is ALWAYS HAPPY!  What an amazing blessing to her family.

Julia's mommy says one of the most important things that happened for them this year was the Cephaly family meet-up we held in May in conjunction with Anabelle's Birthday Bash.  Until then, they had had very little contact with other micro families.  We are so happy to have them as a part of our Cephaly family now.  And a big thank you to Julia's daddy, who is the headmaster at Malvern Prep School.  They donated their gym space for our get-together, and it was wonderful (head's up, local friends: we're starting to plan a holiday party at the same location!  Details soon!)

And now it is time for the updates.  One very exciting and one terrible.  For those of you here with us in 2011, that day's blog featured a young man named Cameron (http://www.anabellerose.blogspot.com/2011/09/small-is-beautiful.html).

Well, in a new development, Cam started seeing a new doctor who diagnosed him with mitochondrial disorder.  This doctor believes that all kids with microcephaly also suffer from mito.  He started treating him with the drug l-methionine, and an amazing thing happened.  Not only did they see an abatement in his gastric issues, but Cameron's HEAD STARTED TO GROW.  As of today, he is NO LONGER CLASSIFIED AS MICROCEPHALIC.  This is mind-blowing.  This treatment is still in its very early stages, and so far, his is the only doctor working with the micro-mito connection theory, but we will be keeping a very close eye on this...

And finally, also in 2011, I introduced you to Anabelle's cephaly sister, Parker.  We call them twins, born 6 weeks apart, very similar in appearance, abilities and personality.  This is Parker and her mommy last Micro Day:

Last Micro Day was Parker's last Micro Day here on Earth with us.  We lost her 20 days later.  The heart-breaking fact still remains that for many children born with microcephaly, especially if it is combined with other diagnoses, it is a death sentence.  It has been a long eleven months since Parker left us, and the hole is still there.  I have been blessed to meet with Megan, not once, but TWICE in recent months, despite the 1500 miles between our homes, and while it was like spending time with an old friend, there was a palpable hole.  Parker's mommy started The Parker Lee Project (https://www.facebook.com/pages/The-Parker-Lee-Project/562760520420671) in her memory, which helps get much needed medical supplies to families who cannot get things they need paid for by insurance.  If you have extra medical supplies or are in need of any, please go check them out.

Anabelle loved meeting with Parker's mommy and daddy, but it was so clear that someone was missing.

For those of you who don't understand why I make such a huge deal out of every Microcephaly Awareness Day, this is it.  So many of our kids have such a short time to make their mark on the world.  So far, since I have been sharing Anabelle's friends on this blog for Micro Day, we have lost two of the kids I introduced you to.  And those are only from this small selection.  I know of dozens more.  It is so important to me for you all to understand how real these kids are, how important they are to their families and friends and what amazing little heroes microcephaly has turned them into.  

Thank you for being here again this year.

Tuesday, August 27, 2013

When it IS too much to handle

First off, I want to thank my friend Malinda over the The Hos Posse  (http://thehosposse.blogspot.com/2013/08/darkest-night.html) for her blog post tonight that gave me the courage to share this one that I've been sitting on.  Disclaimer: This post is not meant to be uplifting.  I have tried to use this blog to inspire or educate or amuse.  Today's post is not about that.  Today's post is 100% about venting my shit on you, because the really low points are part of this life, too.  Proceed at your own risk...

Things haven't been so great around here.  Not with Anabelle, she's been doing well enough.  Not with Elyse, who had a great summer running around at her summer camps.  They haven't been going so great with me.  Life with a special needs kid is a roller coaster, and right now I'm sitting at the very bottom of the highest hill.

Because seriously?  This disabled kid thing is getting fucking old.  There.  I SAID IT.  I don't want to be anyone's hero.  I just want to wake up and say, "It's a beautiful day, I think I'll take my kids to the park for an hour", without it being a major fucking production.  I want to be able to run to the post office before it closes, whether my husband is home from work yet or not.  I want to feed my kid dinner without fighting with the piece of shit feeding pump that clogs if you breathe on it.  I want to own one piece of clothing that isn't covered in drool.

I am tired of my child being hooked up to at least one machine at all hours of the day.  I want to pick her up and cuddle her at any time without getting tangled in cords.  I'm sick of listening to alarms 20 times an hour because her oxygen is constantly dipping.  I want to be able to walk out of the room without having to worry that she's going to choke on her own crud.  I want to leave my house after 4 pm (which doesn't happen, since that is when the nurse leaves).  I want to roll out of bed on a Sunday morning and not immediately have to catheterize my child, prepare the pump for a feeding and give half a dozen medications.  I want to take my family out of town for a spur-of-the moment overnight.

I feel trapped.  I feel smothered.  I see no escape, no relief.  Nowhere in my future do I see the life that my friends get to lead so effortlessly.  I see my youth and my enthusiasm slipping away, being crushed under the responsibilities of keeping up with the needs of one member of a four-person family.

I know a lot of you are now going to want to chime in with suggestions for how to make things easier.  Please don't.  This ain't my first rodeo.  I am deliberately choosing not to get into all the reasons why for all of these things that I mentioned, but trust me: WE'VE TRIED.

I also don't want you to misunderstand me.  I once had a very unkind person accuse me of blaming Anabelle for ruining my life.  I feel bad for this person (a fellow special needs parent), who clearly could not separate her child from the disorder that afflicted her.  Anabelle is not ruining my life.  Anabelle is awesome.  Lissencephaly is fucking me up.  And I don't need to hear about counting my blessings, or about how someone else's life is worse than mine.  I've played that game.  Yeah, a lot of people have a lot worse crap going on.  But you know what else?  For a heck of a lot of people, I'M the one they look at and go, "Hell, at least I'm not HER."

So, I'm going to give this to myself.  I'm going to allow myself a pity party once in a while.  I'm pretty sure I've earned it.  I'm sure the Judgy McJudgingtons will have plenty to say about it, but I'm going to put it out there.  Because the perfect truth of this life is that at any given moment, God DID give me more than I can handle.  I just have to add up all the little moments and hope I still come out ahead on the other side.  There is no other answer.

Tuesday, July 9, 2013

The Rub

Anabelle took a few years off our lives yesterday.  She had been asleep all day.  This is not a totally unusual occurrence, she will occasionally take "sleep days", but usually she can be awakened.  When her nurse left at 4:00, she told me she was feeling a little concerned, Anabelle had not woken up when she was moved or fed or catheterized.  It was feeling a little reminiscent of when she went into epileptic status last year.  So we were watching her closely.  When I went to get her into her pajamas for bed at 7:30, she was still unresponsive.  And she was cold.  Like, unnaturally cold.  I took her axillary temperature.  91.6 degrees.  That's not right.  Went to take a rectal.  93.6 degrees.  Well, crap.  I quickly wrap her in blankets and a hat and sit with her snuggled in my arms to try to warm her.  She stirs a little and lets out a little mew, but falls right back asleep.

Brian and Elyse were having dinner with friends last night, so I call him and tell him what's going on and ask him to stop at the pharmacy to get a new rectal thermometer, as I don't trust these digital things to be accurate.  We discuss the need to go to the ER.  Do we take her, do we wait?  If we take her, we will be there all night, and 99% chance of admitting (they ALWAYS admit her).  I had a meeting this morning, and Brian is on a deadline to finish a house by the end of the week.  Now, I do not say that callously, as in "Ugh, so do not have time for that, she'll have to suck it up."  I say that because this is the ongoing debate of our life: trying to balance Anabelle's needs with the needs of the rest of the family.  We have to pay our bills, we have to eat, and to do that, we have to work.  So it is always a matter of trying to weigh which need is greater.  Can we handle this crisis at home, or is it only something a hospital can do?  We decide to wait another half hour and see if we can get her to warm up/wake up.

Eyes may look open, but no one is there

Now, all of this, while scary, is something we have learned to manage from our new life.  Weighing the factors, brainstorming the solutions, and, if necessary, dealing with the interruptions to our lives to make everything right again.  HOWEVER...there is a wildcard: 5-year-old Elyse.

Elyse came in from dinner excited to show me the early birthday gifts our friends had given her.  When she sees Sissy wrapped up and knocked out in my lap though, she stops short.  "What's going on?" she asks.  "Sissy just isn't feeling too good right now, and she was a little cold," I tell her.  "Oh no, poor Sissy," she says and comes over to cuddle her.  I tell her to go get her pajamas on, and she comes back down and says, "I'm sleeping down here, too.  I'm staying with Sissy."  She lays down on the couch and pulls a blanket on.  I tell her Sissy isn't sleeping here all night, just for a little bit, and that we'll all go upstairs to read her a story.  I haul the blanket-clad Anabelle up to Elyse's room and start reading her a story.  Two pages in, Anabelle is drifting off and her oxygen is downstairs.  I tell Elyse we're going to have to cut it short tonight so I can get Anabelle back downstairs and she immediately sits up and looks around.  "Where are her numbers?" she asks.  "Her numbers" is what Elyse calls Anabelle's pulse ox machine.  I tell her I left it downstairs, and that's why we have to go.  "Okay, Mommy," she says, "I'll turn my lights off."  As I'm walking back down, I hear, "Mommy?"  "Yes, Elyse?"  "I really hope the cold is gone tomorrow."

Shortly after that, Anabelle DID wake up and her temperature came back up.  She's still a little off, and we are talking with her doctors to try to come up with a solution, but she is back to stable for now.  The thing is, though, that the thought that "this might be it" runs through my head more often than I can say.  Last night, it crossed my mind, "Oh my God, her body is shutting down, her organs aren't working, her blood isn't pumping, she's hypothermic."  Because this is always a possibility.  Her brain could one day decide keeping that growing body running is too big a chore for it to handle.  And while this morning I was able to tell Elyse that Sissy was much better, the odds are that one morning, I'm not going to be able to say that.  And I have no idea how I am going to help her lose her only sister, her soul mate.  In our 30's, with a lot of life behind us, I think my husband and I will at least survive the loss, and be able to compartmentalize it and put it in perspective.  But I have absolutely no way of knowing how badly Anabelle's death could F up Elyse's life.  And nothing, absolutely NOTHING, scares me more than that.  And therein lies The Rub.  Both of my daughters' lives and futures are hinged on the life of one.  And while that one will be the one to lose her life, the other has so very much more that could be lost in the process.

Friday, May 31, 2013

What I Want You to Know

I'm pretty sure you all have no trouble understanding that being a special needs parent can be tough.  Many of the ways our life is affected are perfectly obvious for all to see.  But I have been realizing that sometimes the biggest issues are the ones no one sees.  Or they see it, but interpret it as something else.  And just don't fully GET it.  And I know that those of you with special needs families in your life really do want to get it.  Those of you who care about a special needs child or their parents and siblings really do want to know how our lives work and how you can best be a part of it.  With that in mind, I polled some of the special needs moms I know and asked them, "What is the one thing you wish you could tell people about your life?"  The answers ranged from a few words to whole paragraphs, so here I will try to paraphrase the ideas as best I can:

1. Being a special needs parent can be very lonely.  As one friend put it: "Even though SN parents are usually surrounded by people - doctors, nurses, teacher's aides, therapists - we live a life of extreme isolation. It is impossible to care for our SN children AND nurture social relationships: belong to clubs, join sports teams, work full time, attend family functions, etc. Many of us have lost marriages, friends, family members due to the amount of attention and energy our children require.  Many of us have lost relationships because of fear, ignorance, or an inability to give as much as these relationships require because of sick kids, illnesses, doctors appointments, therapy, etc."  Seriously, when it comes to the amount of time that goes into maintaining our children's health, WE don't want to deal with it either.  We understand that the people on the periphery of our lives will sometimes make the choice that it is just too exhausting watching us be us.  But that means that at the end of the day, there is often no one left that we can turn to when it gets to be too much for US.  Blessedly, the modern world of virtual connections has brought many of us friends from around the world who are living our lives, but this does not replace a good friend with a cup of coffee and a hug.

2.  It takes us twice as long (or more) to do ordinary things.  Any parent will tell you that dragging the kids along to the grocery store makes the trip take twice as long.  So add in having to get a special needs kid packed and ready to go pick up a gallon of milk.  First, you have to dress the kid appropriately.  If your child is like Anabelle, who cannot control her body temperature, you need to think about the temperature both outside and inside wherever you are going, and plan the appropriate layers.  You also have to wait for the proper timing between feedings, med administration, catheterization schedule and (often med-induced) naps.  I know for ourselves, there is only a brief window twice a day when Anabelle can accompany us on excursions.  You also need to think ahead to where you are going.  Is it wheelchair accessible?  Is there anywhere to change a diaper?  And remember, this isn't necessarily a 10-pound baby you are changing.  You may be travelling with a 4'8", 75 lb 15-year-old who needs diaper changes.  Then you have to pack the supplies.  Traditional diaper bag, plus food and meds if you are going to be gone long.  Many of us also travel with oxygen tanks and suction machines.  Get the kid settled in the car and get the wheelchair secured in the trunk (except the fortunate few who have a wheelchair van).  And while those wheelchairs are technically portable, they are NOT lightweight.  I have friends who have thrown out their backs and given themselves hernias lifting wheelchairs.  Then, once you get where you are going, you need to unload it all and push the wheelchair, plus a shopping cart throughout the store.  Your 10 minute trip to get milk just turned into over an hour.  

My trunk packed for one afternoon at a friend's pool

3. We appreciate offers of help, but please ask us what would be the most helpful form of help.  Whenever I make comments about not being able to do something because I need to be home with Anabelle, I invariably get someone offering to come stay with her.  While I appreciate the thought, that's not going to happen.  You cannot walk in off the street and care for Anabelle, even for 15 minutes.  What would you do if she started having a seizure?  Or stopped breathing?  For a typical kid, you'd call 911.  It doesn't work that way for a special needs kid.  These are regular occurrences that we have to learn to manage at home, or else we would spend our lives in the hospital.  And seriously, if you call 911, they WILL admit her.  No chance of looking her over and sending her home.  I go to every ER visit with a packed overnight bag.  They will ALWAYS want to "observe her" for the night.  So we have learned that 911 or the ER is a LAST RESORT.  I know for ourselves, we won't even leave a licensed nurse alone with Anabelle until she has completed at least a few days of full shifts with her.  Now, in MY life, enough of my friends know Anabelle well enough to know that they could never just stay with her for me, and they often do offer to run whatever errand I need done, but many of my fellow special needs moms mentioned this scenario, so the advice is: don't offer what YOU think we need, ASK us what we REALLY need.

4.  We DO have a choice.  One of the most common things special needs parents hear is, "I don't know how you do it".  And many of us have developed the pat response of: "We do it because there is no other choice."  The brutal truth, though, is that there IS another choice.  During Anabelle's early days, one of the things that came up in conversation with doctors and social workers is that if we did not feel up to the challenge of taking care of her, we could choose to put her in a group home, or terminate our parental rights altogether and hope someone else chose to adopt her.  I have several special needs friends who are parents through adoption, and it is an amazing thing that such selfless people exist in the world  While not taking her home was not an option we, personally, considered for even a second, the truth is that every one of us with a special needs child, whether by birth, foster, or adoption, at some point made the CHOICE to live this life with that child.

5. Please keep inviting us places.  I know that I turned down the invitation to your daughter's birthday party the past two years, but when one didn't arrive this year?  It hurt.  I know you have book club every month and I made it twice last year, but when you asked me to resign to make room for a new member?  It hurt.  Because it is usually not by CHOICE when I am missing these events.  It's because I have no choice.  Because the nurse called out, or my husband is working late or my daughter is in the hospital again.  But please don't give up on me.  Because I have that faint glimmer of hope in the back of my heart that says next time, I WILL make it.  But when the invitations dry up, that hope burns out, and it is a very lonely feeling.  Please have patience, do not feel slighted, and keep reaching out.  There WILL be times when I can reach back

6. Tell us your problems.  No, the fact that you forgot to dress your child in her Eagles jersey for sports day at school does not equal the 35 seconds Anabelle stopped breathing and turned blue.  (And, by the way, both of those scenarios were me.)  But that doesn't mean that I think you should shut up and quit complaining.  I am a typical parent, too.  I was a typical parent first.  I remember when trying to get Elyse to eat anything but chicken nuggets was the MOST STRESSFUL THING EVER!!  And you know what?  Many days it still is.  If I was someone you came to with your problems before, please don't stop because you think I'll think your problems are shallow and insignificant.  "Normal" things still stress me out all the time, too.  I hope I am still the non judgmental listener I have always strived to be.

7. A lot of the time, our typical kids are our greater worry.  It is pretty obvious that our special needs kids give us a lot to worry over.  Those of us who were given "expiration dates" have to try to fight them while at the same time preparing ourselves for their eventuality.  Those of us who have impaired children with typical lifespans have to worry about how to care for them as they get older, how we will continue to lift them as our own bodies start to slow down, who will care for them when we are gone.  All of that is physical, logistical and apparent.  The thing is, though, that for those of us who also have typical kids, it is usually THEIR well-being and future that cause us the greatest heartache.  These are the kids who can see what is going on.  Who will feel the taunts of schoolmates over having a special needs sibling.  Who will miss out on vacations and field trips and dance class because there is neither the time nor the money to provide those things.  Not to mention, who miss out on having your parent be involved in your life.  One of my fellow moms said, "I'll never be homeroom mom."  Well, I actually am homeroom mom for Elyse's kindergarten class, but to be honest, I don't think I would step up for it again.  It was too much responsibility to take on.  We are the family with only one parent in the stands at sporting events, one parent in the stand at the dance recital.  And I know we are blocking your view with our cameras videotaping every detail, but this is the only way the other parent gets to experience this.  Because it is too hot to bring the special needs kid to the ballpark, and the auditorium is not wheelchair accessible.  There are a lot of charities and organizations out there designed to give the special needs child what they need, but the truth is, it is the REST of the family that usually goes without.  Anabelle has never wanted for a thing in her short life.  It is Elyse who never has two parents at her side on outings, or may never get that trip to Disney World she so desperately wants.  My typical child breaks my heart much more frequently than my special needs child.

Also, for many with special needs kids, they have discovered that the condition was caused by a hereditary trait.  To have another child is to risk the same condition occurring again.  For many, it is not a risk they will take.  And the loss of the additional children they planned on having is as painful, if not more so, than what they face with the special needs child.

Elyse after her end-of-the-year gymnastics demonstration.  I went alone because the viewing gallery was on the second floor and there were no elevators, so Daddy had to stay home with Anabelle

8. Communicate.  We have never really faced the problem of people openly staring at Anabelle out in public.  Maybe because we live in a small community and everyone knows her.  But this is a common complaint of other families.  The solution is simple: just talk to us.  I have never heard another special needs parent say that they were offended when someone came up and asked about their child.  But every one of them is offended when you blantently stare, trying to figure out what's "wrong" with that kid.  Just go up and talk to them.  Also, if the person you know has already lost their child, do not avoid talking about that child.  They WANT to talk about him/her.  They WANT you to know their story.  They WANT you to share their memories.  It is not a faux pas to mention the angel baby.  It IS a faux pas to pretend he/she never existed.

One last note on communication: while we truly appreciate you inquiring after our child, we also like to talk about other stuff.  "Normal" stuff.  The same stuff you like to talk about.  Often, when walking around my small town, I get, "Hey, you're Anabelle's mom!"  I am proud to be known as Anabelle's mom, but my name is also Kate, and I was my own person for a long time before my kids came along.  Sometimes, I like to still be that person.

9.  "Life is Good".  The simple answer from a terrific lady I know with a teenage special needs son.  I know our lives look pretty crappy to you all sometimes.  But the real truth is, overall, WE ARE HAPPY.  Our children, both typical and special needs are amazing people, we have one or two or many supportive, caring people around us, we laugh, we make memories and we live the only life any of us are ever going to have.  Sometimes we falter and have a bad day, but overall WE'RE OKAY.  We are all going to make it, and we hope you'll stick around for the ride

Anabelle celebrating her recent third birthday.  Happy, happy day!!

Sunday, May 12, 2013

Now We Are Three

Dear Anabelle Rose,

Today you are three years old.  For three years you have survived the hand you were dealt, and we have survived with you.

I'm not going to lie: this year has been hard.  You threw us a lot of curveballs and had us guessing and second-guessing a lot.  In December, I said to my closest friends, "I feel like these may be Anabelle's last holidays."  You were so sick and not getting better.  You needed suctioning and oxygen all the time.  And it wasn't anything the doctors could fix, it was just cold after cold that you couldn't handle.  We started questioning whether you were going to need a tracheotomy.

Last June, some hard growths started appearing under your skin.  The doctors were flabbergasted.  They had never seen anything like it before.  They were spreading all over your arms and legs.  We did CAT scans and MRIs.  Every single rheumatologist and endocrinologist on staff at the hospital was consulted.  Then we went to another hospital for a second opinion.  No one had any idea.  They presented us with a couple of treatment options, then told us they didn't recommend any of them, as they were all more dangerous than the condition in its current form, and had no guarantee of working.  All we could do was pray these things didn't start growing on your organs or breaking through the skin.

 With the leg tensed, you can see all of the calcifications just below the skin

And then you got better.  You have had only minor colds since January.  We are now 11 months hospital-stay free.  The latest CAT scan showed that the calcifications have all but disappeared, that what we are feeling in your arms and legs now is simply scar tissue left by their presence.  Once again, you had quietly and stubbornly beaten all odds.

It is very fitting that today is also Mother's Day, because there can be no greater gift than having this past year with you.  This bonus year, as is every one to come after the 2nd birthday we were told you wouldn't see.  No matter how bad things get, how sick you feel, how uncomfortable you may be, you always look up at us and smile, and remind us that all we can do is smile through it all, too.

You are my hero,

Your loving mother