Tuesday, March 18, 2014

The Pregnant Special Needs Mom

Well, we've done it.  We decided to take the leap from crazy into full-blown madness by adding another family member to our already-hectic lives.  While the response from everyone has been loving and positive and supportive, I would not be surprised if some people were saying to themselves, "Are they nuts?" or "That's pretty selfish."  I concur.  The decision that any parent (or would-be parent) makes to bring a child into this world is always a difficult one, no matter what your situation.  But when you are already caring for a special needs child, there are so many factors to consider.

Until his forever name presents itself, we call him "Chuck"

Why are you doing this? In our case, it started with a simple, "Do we want another child?" We had always wanted "2 or 3", so after 3 years of raising Anabelle, we finally looked up and said, "Oh crap, we're old!"  It was time to decide if we were doing this again.  For me the answer was simple.  YES.  I was not done as a mother.  I still felt robbed of the "parenting" that I do not get to give Anabelle.  Because while I am her mother and her caregiver and I learn so much from HER, her level of cognitive impairment really restricts how much PARENTING she needs.  I did not teach her to eat, I did not teach her to talk, I did not teach her to walk, I do not help her work through moral dilemmas or learn how to face adversity.  I do not get to share my love for art and orchids and reading with her, and watch her own interests form and take root.  And with my older daughter at the age of 6, I am already seeing things in the way I have parented her that I would love to "perfect" with another chance (this has nothing to do with the amazing person she is, but with the feeling that her road would have been smoother if I had managed things differently).

My husband, ever the more logical, was more trepidatious.  In a previous post, I have already outlined all the ways in which we are NOT there for our typical child (http://www.anabellerose.blogspot.com/2013/05/what-i-want-you-to-know.html).  Would we be adding to her life with another sibling, or taking away?  And then, of course, the BIG question: what if the new baby also had special needs?  Genetic testing had shown that neither my husband nor I were carriers of the gene mutation that caused Anabelle's lissencephaly, however, there was a very small chance that one of us was what is called a "mosaic", which means we DO carry the gene that CAUSES the mutation to occur.  While this is very rare, if it does turn out one of us is a mosaic, there is a 50% chance any future children will have the same mutation.  And there is no way to test for this.  So while the odds were in our favor, we were still taking a leap.  We know many families who have chosen NOT to take that chance, and I think it is a very brave and selfless decision.  Were Anabelle our only child, I might have been convinced to not take the chance.  However...

Enter Exhibit A: At the end of the day, I think what really made the decision for us was our oldest, typical child.  I will be the first to gush over the amazing relationship that my two daughters have.  Where it is rarely clear when Anabelle has a preference for anything, Elyse is CLEARLY her favorite person in the world.  She responds better to her than to anyone else she has ever met.  And being big sister to Anabelle has certainly brought many wonderful things to Elyse's life that she would not have necessarily experienced with a typical sibling: empathy, compassion, patience (not to mention a vast early understanding of how the human body works!).  However, there are things that she misses as well: someone to play with and the cooperation that comes from shared play; leadership and patience in the form of teaching things to a younger sibling; negotiation and compromise; and hopefully, life-long friendship and companionship (I know some adult siblings who might debate this one, but that's another discussion...).

Sissy bonding time

In the end...there was one factor that outweighed all the rest: Anabelle is not supposed to survive childhood.  Lissencephaly comes with a dramatically-shorted lifespan.  And while medical advances are improving the lives and care of those affected every day, I can still count on my fingers the number of adults I know with lissencephaly.  The thought of Elyse being left alone was too painful.  A scenario in which she loses her beloved sister is too difficult to put into words anyway, but for that to be her ONLY sibling just seems more than we can ask her to endure.  The fervent prayer is that having another sibling will bring comfort when we are finally faced with what we are told is inevitable.

So here we are!  12 weeks until their little brother is scheduled to arrive (and can I add, the fact that the male child finally decided to make his appearance did not hurt in helping his Daddy feel better about the decision).  Any parent of more than one can tell you that the subsequent pregnancies are never like the first.  During the first pregnancy, it is all about that child (and the mother!  Oh, the pampering!).  With the next one or two or four, it is all about the kids that are already there (you know, like EVERYTHING ELSE in your life).  If not for the physical discomfort and endless doctor's appointments, I'd probably forget I was pregnant most of the time.  "I don't have the time for this" is a phrase frequently uttered (ha!  As if there will be MORE time once he is here!).

How is it different?  Well, first of all, is the obvious: lots of extra doctor's appointments and testing.  Because there is no guarantee that this baby will not have Anabelle's mutation, they are monitoring me very closely. We have allowed all NON-INVASIVE testing.  We would not agree to amnio tests, as we were not willing to risk injury to the fetus.  I have monthly ultrasounds to track head size (no problem there, so far he's in the 78%, same as the rest of his enormous, chunky body).

The main ways in which it is different, however, is that Anabelle's extensive needs supersede any needs of mine or the new baby.  When I was pregnant with my first, I would not have DREAMED of setting foot in a hospital full of sick people (yes, I know, all the pregnant nurses are now rolling their eyes at me, but what did I know then??).  I have spent two stays with Anabelle in the hospital during this pregnancy, when she was sick and when she had surgery.  I would previously have looked aghast at anyone who suggested the pregnant woman should sleep on a cot, but that's the only option available to parents at a children's hospital.  It would never have crossed my mind to pull an all-nighter when pregnant with either of my first two.  But if Anabelle's night nurse calls out, there are only two parents available to stay up with her, and one of them has to work the next day.  Carrying and lifting Anabelle has become an issue.  She is 30 pounds and supports virtually none of that weight on her own.  I can no longer carry her up more than one flight of steps (which is a problem at bath time, the bathtub being two floors up from her bedroom).  I also would no longer take her anywhere by myself to wrestle her wheelchair in and out of the car, so if I need to take her somewhere, someone needs to be available to go with me.

"She's having a THIRD baby shower?" I, personally, have never had a problem with someone having a shower or sprinkle for every child they have.  I think each baby is a celebration, and also deserves a few new things of their own.  I do get, however, that some people see this as overkill.  I never realized how much it may be necessary, however, until I started preparing for my own third child.  We have virtually the same amount of baby things available for this third as we did for the first.  As a cognitive newborn, Anabelle is still using a tremendous amount of the "baby" things we had.  All diapering items still belong to her (and always will).  She is still in the convertible car seat as she does not have the head and torso control for the booster seat her sister transitioned to when she was was born.  Bottling supplies are still used to mix the formula she gets through her feeding pump.  She still uses the boppy pillow to sleep at night, as she cannot lay flat or she chokes on her own secretions.  All the baby light-up and musical toys are still used in her therapy.  We still have a baby monitor in her room, as we have to be able to hear when any of her machines alarm.  The rocking chair from the nursery is still seating for her nurses.  In addition, because adjusting to her needs made us space our children farther apart than we may have otherwise, anything that could expire (ie. infant carseat) has expired and needs to be replaced.  And of course, there is all the pink...but that's the deal for anyone who FINALLY got the other sex!  So, available in storage for the new baby, we had: one infant swing, one bath seat, one bouncer and one pack n play.  The end.  (I should add that we did have Anabelle out of the crib, but it was too large for the space where the new baby will live, so had to be replaced).

What happens without Mom? One of the biggest things we are facing is how to manage the delivery and immediately after.  I have gestational diabetes, which means my baby will likely be very large.  At 28 weeks, they are already estimating his weight at almost 4 pounds.  That, combined with a uterine fibroid I have that sits in the path of the cervical opening, already has the term "c-section" being bandied about.  A c-section would mean additional hospital stay and recovery time.  We are very lucky to have 16 hours a day of nursing care for Anabelle.  But who is supposed to watch her between 4 pm and midnight if I am not there?  Especially if I go into labor during those hours and need my husband with me??  And how I am I going to care for her when I get home if I can't lift her 30 pounds without risking ripping out my stitches?  These are the questions that keep me up at night.  Well, that and "what if something goes wrong?" but honestly, I just can't...

So, there it is: the journey from pre-conception to "get it out!" for a special needs mom.  Excited, scared, elated, worried, joyful and exhausted.  You know, the mood swings of every expectant parent...


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

A Very YELLOW Day

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.