Friday, September 30, 2011

Small is Beautiful

Today is Microcephaly Awareness Day.  As I assume anyone reading this knows, microcephaly is one of the conditions that afflicts Anabelle.  This year marks the 4th that this day has been celebrated.  Celebration is simple: wear yellow and tell everyone you meet why you are doing so.  In 2008, a then 12-year-old Robin Freeman, a young man from Great Britain who has microcephaly himself, was tired of no one having heard of his disorder.  He wanted everyone around him to understand what it was and how it affected him and his micro friends.  With the help of his big sister, he chose yellow as the awareness color and selected September as microcephaly month, to culminate in "National Microcephaly Day" on September 30th.  In 2008, he launched this day in England.  By 2009, the Foundation for Children with Microcephaly (http://www.childrenwithmicro.org/) had joined forces with Robin, and the day became an international event.  Robin is a brilliant young man who has handled his disability with grace and patience, and continues to speak for his micro brothers and sisters around the world, many of whom do not have the ability to speak for themselves.

So what has micro meant to our family?  In Anabelle's case, I consider her lissencephaly to be her primary diagnosis, as it is the condition that is most to blame for her developmental delays.  However, the micro is the most VISIBLE of her diagnoses.  Microcephaly literally translates to "small head", and Anabelle's certainly is.  And getting smaller (relatively) all the time.  It grows at a much slower rate than the rest of her, so while on the day she was born neither Brian nor I, nor any of the doctors or nurses in the room noticed anything amiss until her head was actually measured, anyone who looks at her these days can clearly tell that there is something "not right" about her.

Anabelle at 3 days old

Anabelle at 17 months

Her micro actually helped to mask her developmental delays for awhile.  Everyone just looked at the tiny head and assumed she was a newborn, not a nine-month-old who couldn't support her own head.  I got a lot of, "How old is she?", followed by a pause and an, "Oh my, she's tiny isn't she?" after hearing that she was a good 6 months older than anyone would have guessed.  This doesn't work so well now that she is a giant toddler in 2T clothing.  It's pretty clear at this point that it's not just an age thing.

On this micro day, I would like to remind you all that microcephaly is not just a clinical term.  It is real children and their families living with a neurological disorder, the results of which can range from mild to severe developmental delays.  So I would like to share some of Anabelle's micro besties with you:

This is Sahil visiting with his Grandma Mary and Anabelle when we caught up with some of our Anycephaly buddies earlier this year (see blog post from August entitled, "Road Trip").  Like Anabelle, Sahil also has lissencephaly.  He and his mommy, Jen, just moved into some fancy new, custom made digs that will hopefully make it easier for his single mom to care for all of his needs herself (as they have been continually turned down for any nursing help).  As you can see, Ana and Sy are calculatingly avoiding each other.  Sahil has even propped his foot on Anabelle's leg to push her away.  Hopefully they will grow into each other, though, as Jen and I have already negotiated an arranged marriage (his Indian father will be so pleased).  The contract will be sealed as soon as I deliver Jen a goat as Anabelle's dowry...

This rag-tag group of adorable red-heads is Samantha with her two older sisters, Allison and Leah.  This photo is of them in their yellow for last year's Microcephaly Awareness Day.  Gorgeous Sammy just turned four years old, and as a birthday present, her mommy and daddy decided to give her a new brother or sister!  Due to arrive sometime next year...
Samantha's sister, Leah, has cystic fibrosis.  So this family is on a first name basis with the parking attendants at their local children's hospital.  But these are the three most amazing, plucky, loving sisters you will ever meet, and there is so much joy in their lives!

This little beauty is Parker, who is also afflicted with micro and liss like Anabelle.  She's one of my special princesses, as her mommy, Megan, was one of my first special needs friends.  Parker is only about 6 weeks younger than Anabelle, so when Megan and I met, we were still in the "deer in headlights" phase of this whole SN life, and have walked through each step together ever since...

These two amazing little people are Claire and Lola.  Both have microcephaly with simplified gyral patterns (a form of micro and liss) and dwarfism.  At the ripe old age of 10, Claire has only recently broken the 20 lb mark.  Their mommy, Gwen, is literally the second special needs friend I met on this journey.  The very first night that I was reached out to by the Facebook liss/micro community, Gwen and I had a long chat session in which she totally freaked me out (but in a totally necessary way!) about what was to come.  I was terrified and grateful after our talk, she told me so many things that no doctor would ever know to tell me that have made this journey SOOOO much easier to handle.  And she continues to do so to this day, I might add.  Shown here is also World's Best Big Brother candidate #1, Cal (who, btw, in my typical over-controlling Jewish mother kind of way, I have already selected as Elyse's future husband.  I know he's a little old for her now, but he will be sooo happy when he has a hot, young, blonde wife down the line!)


Here's Shiloh showing off her adorable new haircut.  Shiloh is 5 and has microcephaly.  She is legally blind (although I have seen some of this little girl's drawings, and she sure knows what she is doing!).  Shiloh can walk, talk, run, play and cause general mischief!  Her mommy, Suzanne is a lovely, positive woman who faces her challenged live with enviable grace.  She also makes beautiful handmade jewelry (shameless plug, the holidays are fast approaching! https://www.facebook.com/DominiDesigns)


Handsome Cameron, one of Anabelle's oldest micro buddies (almost 11).  He is the youngest of NINE kids, all raised by single supermom, Keri, who also serves as "Den Mom" to our Anycephaly community.  Cam's older brother has Aspergers, and is also a youth minister.  Miss Keri, who I call Momma Bear, is my direct line to God, and spends so much time praying for Cam's micro and liss buddies that I don't know how she had time to raise so many awesome children.  Cam walks, talks, goes to school, and is able to express himself when his disability holds him back.  He struggles with reading, and recently was teased by some boys in his neighborhood for being "not smart".  After telling his mama what happened he said to her, "Mom, I'm mad at them, but God says we are to be merciful."  He is a much wiser man than I.


This beautiful little girl is Alyssa, and here she is swimming in the pool of the hotel we stayed at for the Anycephaly get-together.  Her 8th birthday happened to fall on the weekend we were there, so we had a fantastic reason to party!  Alyssa can talk, play, walk with assistance and loves to eat!  She is spoiled by her grandparents, and with good reason!  The happiest little lovebug you will ever meet!


Cool dude Jacob was diagnosed with polymicrogyria (small head with unusual formation of the brain, essentially).  A recent MRI also added lissencephaly to the list.  He was one of the friends we made in Michigan this summer, and he had his two (typical) cousins with him, who were so great with all the sn kids there.  His cousin, Addison, became a special friend of Anabelle's.  Jacob touches me because he is very close in age to Anabelle's big sister, Elyse.  It lets me feel what my many friends with typical kids the same age as Anabelle feel.  Comparisons from the other side.  It is grounding that I have the opportunity to live in Holland and Italy (if you missed this reference, see my blog post from July, "I don't know how you do it")


Miss Katelyn is the spitting image of her beautiful mama, and they are two peas in a pod.  I guess her father couldn't handle the special needs life, so now it's just Katelyn and mom.  "Squish" as her mom calls her, loves going to school, can sit on her own, as you can see, and has the most beautiful smile in the world!  They also live nearby my favorite band of red-heads (pictured above), and I am always jealous when they talk about getting together!


Here is Princess Giana with her twin, Dominic, who is typical.  Giana has micro and liss, and as you can see, needs a tracheostomy to assist her with breathing.  Like Anabelle, she cannot walk or talk, and uses a gtube for all of her nutrition.  Also like Anabelle, she has a sibling who dotes on her!  Giana spent the first year of her life almost entirely in a hospital, but single mom, Shelley, does an amazing job of keeping her home now!


And finally, I present Emily.  And I place Emily last not in order of importance, but because, as you can see, I present to you a photograph of Emily and her mother with...yes, that is JOHN STAMOS.  You see, there are some perks that come with having a special needs child!  Emily has suffered greatly over this past year.  Spent way more time in the hospital than out, while her mommy and daddy had to shuffle hospital life with work and caring for big brother, Jacob.  Finally diagnosed with mitochondrial disease (is that right, Sara?  Was that the final consensus?) on top of her microcephaly, Emily is finally home and was enjoying a charity event when Uncle Jesse walked into the room.  That's right, our micro kids help us meet celebrities.  And go to Disney World for free.  Or get super cool adapted play structures in the backyard.  Your typical kid never got you that stuff (unless your typical kid is Dakota Fanning)


So, these are some of the people in our neighborhood.  The people that we meet as we're walking down the (virtual) street of Microcephalyville.  The incredible kids (and their families) who know what it means to live our new life.  These are the faces of Microcephaly









Wednesday, September 14, 2011

Best of Intentions

I had it all planned out.  After we got married, we would buy a house.  We were married May 28, 2006 and made settlement on a house that September.  After the house was in place, we would have our first child.  One month after settlement, I was pregnant.  I would go back to school and get accredited to perform personal property appraisals so I could leave the firm I was working for and open my own business, enabling me to be at home with the baby and also contribute to the household income.  I received my accreditation in June of 2007, Elyse was born in July.  When Elyse turned two, we decided to give her a sibling.  One month after her second birthday, I was pregnant again.  It was another little girl, my business was going well, and I hoped down the line I would be able to convince the hubby to add number 3.  Everything was going exactly according to the life I had planned in my mind.

And this is when the plans all came to a screeching halt.  Anabelle arrived with a completely new plan in mind.  Nothing could fit into the perfect little collage frames I had already envisioned in my head of the perfect little memories my family was about to build.  I had rows of matching little girls clothes hanging in two closets in side by side rooms: 3M and 3T size.  All ready for that first summer when I would take my perfect little girls to the playground and the zoo, and their grandparents 40th anniversary party that was planned for three weeks after Anabelle was born and for which the invitations had already been sent.  Most of those matching outfits were never used.  Anabelle spent the first two months of her life in the NICU.  Elyse was 2 years and 10 months when her sister was born, and in order to visit a sibling in the NICU, you had to be 3.  Anabelle was released from the NICU 4 days before Elyse's 3rd birthday.  They met for the first time in the waiting room.  She was wearing 6M clothing by then.  My perfect matching outfits were a total waste.  My Jewish grandmother would have warned me about bringing stuff for the new baby into the house before it had arrived safely, it was bad luck.  Guess she was right.

I've pretty much reached a point with Anabelle that I have stopped comparing her to other children her age and grieving for what she will never have.  But the piece that I have NOT come to terms with is what ELYSE has lost.  Everything I had wanted for her to have in a family and as a child that is no longer possible in the way I imagined it.  Growing up, my brother and I were four years apart.  We loved each other, and got along about as well as any brother and sister, I guess, but we were not CLOSE.  The age gap ensured that we were never in the same school at the same time, never at the same place in life.  Could never join the same classes or sports teams or have the same friends.  When we planned the spacing of our children, it was with this in mind.  I wanted them to be closer in age.  Not so close that Elyse was forced to grow up before her time, but not so far that their lives would be forever in different places.  Hahaha, got the exact thing I was trying to avoid, now have two girls who's lives will be FOREVER in different places!

I cannot put into words how heartbreaking it is that we failed to give Elyse the playmate and lifemate that we set out to provide.  How is feels when I watch Elyse try over and over again to include her sister in her play, but then get bored with it after a few minutes, because who can really be entertained by someone who does not play back?  Every time Elyse asks me to play with her and I have to say no because I have work or chores or am caring for Anabelle, I am wracked with guilt, because it is NOT HER FAULT that she has no one to play with.  She was supposed to have a sister for that.

And while we both hope that there will be another sibling somewhere down the line, it is already too late for the relationship we wanted.  Elyse is now four.  The earliest she could get another sibling would be when she is 5 (and since there are NO immediate plans to start on that one, it will be even further in the future then that).  I am sure she will love the new sibling and care for it and teach it, if and when he/she ever joins our family, but she will no longer be in a place where SHE benefits AS MUCH from the relationship as the younger child will.  It will not be a playmate as much as a responsibility to share, someone to teach and watch out for, but not someone to share life events with, share secrets with, share clothes and shoes and makeup with.  It will be totally different from what I had planned.

But there it is.  The best laid plans and all that.  In the immortal words of John Lennon, "Life is what happens to you while your busy making other plans."  Perhaps if I wasn't such a planner, I wouldn't have suffered so much when my dreams didn't come true.  If I was a roll-with-the-punches, deal-with-whatever-life-hands you type of gal, I may have been better equipped to bend and mold my life around my new reality.  It was a lot harder for me to accept what happened than it was for my husband.  Than it seems to be for a lot of the other special needs parents I know (of course, I would never presume to know what REALLY goes on in their minds).  And now I'm having trouble building a new future in my mind, because I know what it feels like to have the rug pulled out from under you, and I never want to feel that again.  So I am trying to become a more flexible person, trying not to have a panic attack when I don't know exactly what is happening at every minute.  Trying to have faith that there will be good things to come, happy memories, a loving family, in whatever shape, size or form is presented to me.  And trying to stop grieving for what I always thought I wanted.  Because I have to face to pure fact that just because I wanted it, does not mean it was EVER guaranteed to me.

Sisters meet for the first time right outside the NICU on Anabelle's two month birthday

FINALLY in the matching dresses meant for my parents' 40th anniversary party over a month before (Anabelle was still in the hospital that weekend, recovering from gtube placement)

Sharing tummy time

Elyse thought Anabelle looked bored, so tested EVERY toy, trying to engage her

Always a favorite activity around here: Elyse singing to Anabelle

Daddy's girls enjoying the return of football (both intently watching the tv screen)

Thursday, September 8, 2011

Lies My Doctor Told Me

Before Anabelle was born, I actually had very little interaction with doctors.  My only hospital stay had been after giving birth to Elyse.  I had one surgery on my hand in 8th grade when I cut through a tendon in my finger.  I saw the gynocologist once a year for my PAP smear (anyone else gag on that term a little?  Sounds so gross!  SMMMMEEEEAARRR.  BLECH!).  Haven't seen my primary care doctor in years.  And it had never even crossed my mind to question anything a doctor told me.  They were the doctor.  They had way more schooling that me, especially in the sciences, and whatever they told me was what it is.  Follow their directions and you get better.

For those of you who are not special needs parents, I'd like to share a little secret: Doctors don't know JACK!  ESPECIALLY if it is outside of their field.  IN their field, they MIGHT be geniuses (and I will present some evidence to the contrary in a moment).  But if you have a headache, don't go to the podiatrist.  I have a good friend who is a cardiologist.  I would put my heart in his hands (literally, if necessary).  But when Brian cut off the tip of his finger and this friend came to the ER (which was very sweet of him to do), he kind of hovered around going, "Hm, not really sure what they're going to do."  LOL! (P.S. the answer was "nothing".  Bandaged it up, sorry about your finger, dude, come back next week and we'll close up the wound.)

When you have a child with a rare diagnosis, even the experts in their fields may have never met another child with this condition before, and some of them turn into idiots.  Anabelle was transferred to the NICU at A. I. Dupont hospital for children the day she was born.  Three days later, after an MRI, we were given the diagnosis: Microcephaly with simplified gyral patterns. (Here I would like to add that this diagnosis has been changed or altered at least half a dozen times since that day: "Microcephaly with simplified gyral pattern group 5", "Lissencephaly with cerebellar hypoplasia type d", "cerebral palsy"-added by the orthopedic doctor, "reduced white matter volume and impaired myelination", "hypoplasia of the vermis, cerebellar hemispheres and brain stem", "hypoplastic optic nerves"-added by the eye doctor, "lissencephaly type 3-TUBA1A mutation"-added after the genetics testing, and so on and so forth, ad nauseum).

The day after this diagnosis, as I stood staring down at my tiny (and I mean tiny! 5lb, 12 oz, WAY smaller than her sister!) baby and trying to process what all of this new language meant, the head neonatalogist on the floor came and stood next to me.  Now, I will say that despite the story I am relating, we actually really liked this guy.  He was probably our favorite attending in the NICU throughout our stay (they rotate every two weeks).  I turned to him and asked if we were in any immediate danger of losing our baby.  He said no. Then I asked if we should expect her to live a full life, to be 80 or 90 years old.  I will never forget his exact words, "Well, I'm not sure about 80 or 90, but there is no reason to think she won't make it to 60 or 70."  At this point, all of you liss parents are making that disgusted nose snort noise.  For those of you who may NOT know, lissencephaly comes with an extremely shortened lifespan.  If you try to research it on the internet, most of what you will read will tell you that the patient will not survive their second birthday.  Blessedly, this is not really the case for many of our kids anymore (although still is for an unacceptable number of others).  I know many kids in the 10 and under age group, a healthy number in their teens and a handful in their 20's, still doing great.  There is even word of the magical Roberta, age 41 and still going strong under the exhaustive care of her mother Isabel who has made it her life's work to find a better form of seizure control.  She is our matriarch and guiding light.  But there is not one person whom I have ever heard of who has lived into their 60's and 70's.  I don't know if that doctor was simply completely ignorant about her diagnosis, or if he didn't want to have to be the one to tell me that I was (most likely) going to have to bury my child one day.  Either way, he gave me false hope (and false stress, as I tried to imagine what on earth will become of her once I am gone) for a good few weeks until I could finally bring myself to research the diagnosis on my own.

A few days later we asked for a meeting with the neurologist who was handling her case (and who still is her neurologist today).  We told him we understood what we had been told about her condition (sort of), but just wanted him to tell us what we should expect from her developmentally.  He kind of hemmed and hawed around for awhile, but there were two things we specifically asked.  1) would she know us as her mother and father.  He said yes.  I guess he was right, but not in the way that I envisioned at the time.  I was envisioning someone saying, "Anabelle, where is your mommy?"  and her either pointing to me or looking at me or SOMETHING.  Not even close.  She does appear to differentiate between the voices of the people who are around her the most: me, Brian, Elyse, the day nurse.  But she does NOT understand the relationships.  She just knows that we are nice people who pet and kiss her.  2) we asked if she would walk.  He gave her a 50% chance of walking by the age of three.  Now, I know that she is only 16 months, but the kid doesn't even support her own head, so I'm pretty sure that was a little bit of a long shot.  Not sure the odds were ever that good.

At the age of one month, Anabelle was getting a gtube implanted in her stomach so that we could feed her, as she was not able to drink from a bottle.  The day before the surgery, the surgeon came to see me to explain the procedure, and he says to me, "Now, I don't want to say that 100% of the time, nothing goes wrong, but 99.999999999% of the time, nothing goes wrong.  This is a totally routine surgery."  He then proceeded to perforate her stomach lining during this "routine surgery" and not realize it, and the mistake was only discovered a week later after she almost died.  It necessitated a second, open belly surgery that prolonged her hospital stay by another month.  Once nice thing about a surgeon almost killing your kid?  You get his cell number and he pulls whatever strings you want with any other department in the hospital, even if it's not surgery related.

At the age of three months (after only a month at home post-NICU), Anabelle began vomiting with every feed.  After a nine day hospital stay, the plucky intern came and told us they couldn't find anything wrong, and that they were thinking this was just her neurological baseline.  I looked her in the eyes and said, "Look, "Dr. Abby", I know you've had about 5 more minutes of med school than I have, but I pretty sure puking is not a neurological symptom."  They discharged us anyway.  Two weeks later I got her in to see a GI doc affiliated with another hospital (who, by the way, is an angel sent straight to Anabelle from Heaven.  He has literally saved her life on numerous occasions) who immediately switched her to a prescription formula and reduced her feeds (since her pediatrician had us feeding her as much as a healthy, active baby who had NOT had TWO abdominal surgeries).  The vomiting ceased immediately.  P.S. On Anabelle's next hospital stay 10 months later, Dr. Abby was now the nighttime on-call resident for the ward, bless her plucky little heart!  She had NOT forgotten us!  LOL!

Well, I could go on and on, but I think you all see where I'm going here.  My view of doctors has DRASTICALLY changed in the past 16 months.  I am now more inclined NOT to trust what they say than I am to trust it.  I follow up every recommendation with my own research, with discussions with other liss parents, and sometimes with second opinions from other (possibly equally as untrustworthy) doctors.  In case you were wondering, that is the kind of thing that is the time-suck that leaves me unavailable anytime you ask if I can do something.  However, I will say that I am probably a lot less likely to die from a medical mistake than the rest of the world, since I just assume that everything any doctor tells me is a mistake until I verify it independently!

Live and learn

Monday, September 5, 2011

Road Trip Part Deux

One of the unfortunate things about having a special needs child is that it can be very difficult to travel as a complete family.  Anabelle was more than willing to tolerate the 1200 mile round trip to Michigan to see her cephaly friends, while Elyse would never have survived a trip like that (probably because somewhere in hour 5, Mommy would have snapped due to all the whining).  When it was time for a trip up to Hema and Hawa's country house, Anabelle was the one who got to stay behind and hang out with Daddy.  If it had been just a family trip, she would have come along, but this time we had two other families travelling with us, and it didn't seem fair to have to ask 7 other kids to always be waiting for Anabelle to be prepared to go out, or having to stick to her med/feeding schedule.  So, this road trip was Elyse and Mommy time.  Hema and Hawa have 14 acres in upstate New York, outside of Binghamton. Two houses and various other out buildings, a swingset, a river, some cows next door and lots and lots of fresh air!

The usual suspects (minus a few who couldn't make it)

Happy hayriders

Not just for babies, works great for kids of all ages when mommies are ready to drink!

Hema reads a bedtime story (btw, this was the ONLY night the mass sleepover was permitted.  My daughter's bloodshot eyes the next day were proof that she needed to sleepover with ONLY Mommy for the rest of the trip!)

HOURS were spent playing in the river.  These are NOT mermaids on a rock, they informed us.  They are, in fact, T-rexes.  Not a sissy amongst us

The neighbors

In case anyone was foolish enough to believe that travelling with this many kids is a vacation for mommy...

Pure joy in the fact that mommy let her swim right in her clothes!

Love how the biggest headliner at the town Labor Day picnic is BINGO

Anabelle enjoyed a quiet week at home with some extra therapy.  Daddy, once again, missed all of the excitement, although I suspect he's not TOO upset about that!