Friday, July 29, 2011

"I don't know how you do it"

I want to approach this subject delicately. Because I am risking hurting some feelings, and that is NOT the intention.  But I've been thinking a lot about a topic that often comes up in discussion with other SN (special needs) parents, and wanted to chat about it a little.  It is this: the things that non-SN friends say to you about you and your kid.  Some examples:

"I don't know how you do it, I would never be able to do what you do"

"God never gives you more than you can handle"

"She is sooo lucky to have you as a mother"

"I shouldn't be complaining to you, it's nothing compared to your troubles"

Just a few common examples.  Now, at this point, about half of you reading this are going, "Um, I've said that to you a few times."  I know, I know.  I GET it!  I REALLY DO!  You are not insulting me when you say these things, and I totally understand: what the hell ARE you supposed to say?  I am sure I said these very lines myself before becoming a special needs parent.  But I just want to throw out there some of the feelings I hear coming from the SN parents when we hear these lines over and over.

Let me focus on the most commonly cited phrase: "I don't know how you do it, I would never be able to do what you do."  Let me clue all you non-SN folks in: WE DON'T KNOW HOW WE DO IT EITHER!  We were all you before our kid came along.  I used to look at parents with special needs kids and think, "My God, I would just DIE if that was my kid."  The thing is...we don't really get a choice.  This is the kid we were given. They don't let you trade it in for a healthy one (I know, I tried).  So please, just trust me on this one:  You WOULD be able to do it, because there is NO OTHER CHOICE.

And I just want to make a quick note about the last one on the list.  See, the thing is, I am still your friend (at least I hope I am).  Was I someone who you went to with your troubles before my daughter was born?  Then please, PLEASE, do not limit our friendship because you think your troubles aren't worth my time.  We will no longer BE the friends we were if you no longer treat me like the same friend.  I do not live in a vacuum.  I remember when trying to get my first child to eat all her dinner with the most FRUSTRATING THING IN MY WORLD (it still is many days!).  I am totally able to put things in perspective, and I am NOT turning up my nose at you because you are complaining about something so "stupid".  Are we friends?  Good, then let's just be friends.

Another perennial fav is to send a new special needs parent an inspirational quote or essay.  I received many, many copies of Erma Bombeck's "The Special Mother" (http://www.our-kids.org/archives/Special_mother.html).  I gotta clue you all in a little bit though: Erma did NOT have a SN kid.  So while that little essay looks great on the surface, so supportive and complimentary of your new SN friend, I personally want to scream every time I read it.  Because if being that wonderful person is what got me my SN kid, then I DON'T WANT TO BE THAT PERSON!!  I would rather be a total piece of s*&%, poor excuse for a human being if it meant that my daughter was going to have the chance to make her own way in the world.  That is a pretty crappy trade-off, if you ask me.  I am not interested in "bettering" myself at my child's expense.  And even something like "Welcome to Holland" (http://www.our-kids.org/Archives/Holland.html), which IS written by a SN mom, rubs me wrong way because I am a total Italophile.   I LOVE ITALY.  It is my second home.  I DON'T WANNA GO TO HOLLAND!!  I don't like unexpected turns in the road, I'm a planner, I don't like to "roll with it".  So while I know that that particular essay is a great favorite of many of my SN friends, it still isn't top on my list

Anyway, this is kind of degenerating into a rant, and that wasn't the intention.  And I would like to take a break in my narrative to once again repeat: this is not intended to hurt the feelings of those of you who have said these words to me.  They did not insult me to hear, I completely understand where you are coming from when you say them to me, I am just taking a cerebral walking tour.

All of us SN parents approach our new life with our kids in different ways.  I have a lot of friends who are very sensitive about their kids and their troubles, and do not appreciate when someone tries to make light of it or joke about it.  For those of you in my life, I would like to say this to you: I am not one of these people.  You are probably reading this diatribe going, "Ok, Kate, I hear you.  But what CAN I say to you?"  Let me give you a few examples of things you could say that would actually brighten my day:

Me: "I'm exhausted, Anabelle was up all night puking."
You (good answer): "OMG you poor thing, I hope she's feeling better this morning"
You (better answer): "Can't she save that s%^* for the daytime when the nurse is there?"

Me: "The doctor told us Anabelle will never walk"
You (good answer): "OMG, I'm so sorry, I cannot even imagine how you are feeling."
You (better answer): "Of course not, you know that diva needs to be carried everywhere she goes.  Next she'll be demanding a sedan chair and servants to carry it."

Me: "Anabelle had her first seizure last night"
You (good answer): "I'm so sorry, I know you have been praying they would never come"
You (better answer): "I guess the princess thought you were getting a little TOO comfortable with your new life.  Must not have been getting enough attention"

Ok, I know not all of you are sharp-tongued like me, it's probably pretty unrealistic to think those are the responses I'm going to get.  I'm not saying the things you all have been saying to me for the past year are bad, I'm just tossing around a few thoughts from another perspective...

So don't hate, just some rambling thoughts for the evening.  I'm just sayin'...

Wednesday, July 27, 2011

Sisters

I remember very well the day we went for the 20 week ultrasound (it was actually at 19 weeks) and were told we were having a second girl (and, FYI, Anabelle's head circumference was actually measuring slightly LARGER than average at that ultrasound...but that's another story...).  I was actually a little freaked out.  Not because I had been desperately hoping for a boy or anything (although I did think she was a boy, as my pregnancy had been so different from that with Elyse. Turns out there was a lot more different with Anabelle than just her sex!!).  It was because my children were going to venture into a relationship that I could not possibly understand.  I grew up with a brother.  I had absolutely no idea what the sisterly bond was like.  Up to that point, there had been nothing that Elyse had experienced that I had not experienced myself.  It made me feel very strange that she was now going to have something so uniquely her own.

Well, as it turned out, of course, she was getting something even more unique than I could ever have imagined.  Both my girls are living lives that I cannot ever fully understand.  Anabelle spent the first two months of her life in the NICU, and the rule was that no one under 3 years of age could enter.  Elyse did not turn 3 until 4 days AFTER Anabelle came home.  Therefore, while we dealt with the diagnosis and doctors and surgeries and tears, depression, anger and everything else that came with Anabelle's birth, Elyse was living in a world in which her sister was almost a fictional character.  Every day, Mommy and Daddy dropped her off at Hema and Hawa's house (for those who do not know, these are the names Elyse herself gave to my parents) and went off to see this mythical "sister" creature.  And during those two months, the only thing I could think, stress, cry and fear for was how this new situation was going to ruin Elyse's life.  That in trying to give her a playmate and life-long friend, I had actually given her a life-long burden.

Oh, if ONLY Elyse had been permitted into the NICU during those long months.  I could have saved myself so much heartache and guilt.  Because the truth is, Elyse ADORES her sister, and the feeling is mutual.  So many times since Anabelle was born, someone has said to me that God intended me to be her mother.  I'm not so sure.  I'm pretty certain that what God intended was for ELYSE to be her SISTER.  I just happened to be the mom already in place.  Elyse is protective of her sister, she plays with her, sings to her, wants to help with all of her therapies and treatments.  And Anabelle responds better to Elyse than to anyone else in her world.  She turns to her when she speaks, laughs when she laughs, sings when she sings.  Never were two sisters more meant for each other than these two:

Meeting for the first time directly outside the NICU doors

One of my favorite photos of all time: Elyse helping Daddy bust Anabelle out of the hospital

Another fav: first day at home as sisters

Elyse can always get Sissy's attention

Helping out with tummy time

Personality Plus

She always includes Anabooboo in her playtime

Elyse thought Anabelle looked bored

Singing together

Waking up with a kiss

Sisters sharing secrets

And finally, to see them in action:

video

Tuesday, July 26, 2011

Working hard or Hardly working?

Yesterday we had the annual review for Anabelle's early intervention services.  Her physical therapist (who we haven't been too thrilled with anyway) stated that since Anabelle hadn't really been meeting the goals set forth for her and seemed to be fatiguing during sessions, she recommended lowering her therapy sessions from once a week to once every other week.  Well, obviously I shot that one down immediately and told her that if Anabelle wasn't progressing in what she was doing, maybe she, as the therapist, needed to devise a new plan.  The EI coordinator backed us up, telling the therapist, "We don't decrease services when a child is not making progress, only when they have progressed so much that they no longer need our services."  Idiot.  But I'm not going to dwell on that right now, the incident actually just got me thinking: what progress HAS Anabelle made in the past year?  So, let's examine the evidence in photographic form:

Anabelle: one day old.  NG tube in nose supplying her nutrition.  Holding (but not sucking) binky in mouth


Anabelle: 6 weeks.  Maggie Simpsoning the bink after oral therapy

Anabelle: two months.  Drinking from a bottle

Anabelle: 5 months.  First taste of baby food

Anabelle: 6 months.  Drinking from a cup


That was a look at feeding advancement.  Now let's check out physical therapy, shall we?

Anabelle: 10 weeks.  Lifting head during tummy time

Anabelle: 10 months.  Trying out a crawling position
P.S. This is her awesome OT pictured, not the douchebag PT

And a go at sitting, same day

And finally....
Anabelle at 14 months, testing out the ol' stems (once again, courtesy of her OT)

So, I don't know y'all, think we should just throw in the towel on Anabelle?  We've decided to just throw out the old PT


Monday, July 25, 2011

As if you haven't heard enough...

That's right, folks: I'm blogging.  Why? *shrug* I have too much free time  I have something important to say I'm an attention whore?  Maybe.  Mostly cause sometimes I just feel like writing, and because sometimes people feel like listening.  Because we have a lot of people who are interested in how our lives have changed in the past year, and not enough time to keep everyone updated on that status.  So just to get things started (and because it is already late for today), I'm going to repost the note that got it all started: my birthday letter to Anabelle.  Skip to the end if you've heard this one...


First of all, please let me apologize, as these thoughts are the random compilations of a year's worth of musings that I have tried to edit and put together in an effort to help those of you who want to understand what my life has become in one short (and in some senses very, very long) year.  So bare with me if they are disjointed or not clearly articulated. I also want to say that when I started putting this together, I intended it as a love letter, but I have found it slip into some really dark places along the way, and I have decided to leave those thoughts in because they are the truth, and you cannot fully understand my internal struggles without them.

When this all began, there was a long period of intense grief.  As I started to get over my overwhelming heartbreak and turned to the task of living this new life, I started to notice the little things around me that were making my life possible to continue, in a way I had never noticed such things before.  It is in the compilation of these little (and not so little) things that I am seeing the ways God is helping us get through.  Please don't mistake me.  I am still very angry.  I know a lot of you are Mama Lions, just like I am.  You want to fuck with my kid?  Worst mistake you ever made!  But what do you do when the one who fucked with your kid is God?  What do you do when the doctors tell you that the reason your child is this way is because something went wrong with her genetic sequencing at the exact moment of conception?  This kid never had a chance.  At Passover we sing a prayer called "Dayenu".  This means, "It would have been enough."  We say to God, had you freed our people from slavery, but not lead us out of Egypt, Dayenu.  Had you led us out of Egypt, but not parted the Red Sea, Dayenu, and so on and so forth, all the way to the Holy Land.  While I acknowledge and am thankful for the gifts I have received, I  have not reached the point where I can say to God, "Dayenu".  The only thing that I can see right now that would make me say Dayenu would have been a healthy child.  This is a spiritual struggle for me that I continue to try to answer and accept.

I have lost some friends over the past year.  I expect to lose more.  Only in a few cases would I say this is related to them not being able to deal with Anabelle's condition.  More often it is a result of the fact that I am not able to be the friend I once was.  I don't keep up with people as well.  I forget important dates, I miss functions.  Even when I do see or speak to people, I don't listen as well as I used to.  My mind drifts.  There is a sadness about me that is always present.  I feel it, I see it, and I know others do to.  It makes it difficult to be around me, and I understand that.  Some days I am okay.  Some days I marvel at the miracle that is Anabelle's soul: her smile, her laugh, her sense of humor (and those who know her best know I am not making that last one up).  Other days I am terribly, horribly not okay.  Some days I wish I had been satisfied with one healthy, happy child and never even thought of having another.

On the other hand, I have also gained friends in spades.  Not just my anycephaly family, but people who were already in my life who really stepped up and reached out to my family, and have become invaluable to me.  But at the end of the day, there is a lonliness that I just can't seem to shake

It's been one year since I've known true, unfettered happiness.  One year since I've been excited or hopeful.  One year since I've really and truly FELT anything.  A year ago I had hope.  There was still a chance that Anabelle was going to be one of the "less affected" kids.  The doctors would give us no concrete prognosis, so I was able to fantasize that she would be able to walk and talk, at least to some degree.  Now I know that this is not in the cards.  At 1 year, Anabelle cannot support her own head.  She cannot sit, cannot roll, cannot focus her eyes or track, cannot reach for a toy.  She will continue to make small progress, but she is never going to be the active, chatty little girl I still held out hope for one year ago.  That hope is gone.  It is so hard to stay positive when I don't even know what I should dare to hope for anymore.  And if there is only one thing I make clear in all this, I want it to be this: I am not upset about the child I got.  What I am is in mourning for the child I expected to get.  For the life I was trying to build that will never be.  For what the loss of that has done to me, my family, and especially my children.

There are many children in my life that I love only slightly less than my own: Abby, Sophia, Juliet and Mia, Johnathan, Caileigh and Piper, Talia and many more.  But something unique happened when Anabelle's condition lead me to reach out to others in a similar situation.  I found myself falling in love with so many more children, many of whom I have never even met in person: gorgeous Brooklynne, the wonder dwarves Claire and Lola, Brady: the hardest fighting little man I know, sassy Miss Gracie, Anabelle's best big-boy friend Will and his siblings, (who are true sassy, insightful kids after my own heart), my best red-head Sammy and her beautiful sisters and hundreds more.  With this pure gift of love and undying support, however, comes a price.  Every time one of my new babies is suffering, I suffer.  Every time one of them becomes an angel, I die a little too.  This roller coaster of emotions is a totally new aspect of my life.  These situations were not something that existed for me one year ago.  One year ago, I had ONE family friend who had lost a child.  Now I know dozens.  This new reality is difficult.

Anabelle and some of her besties:

Miss J loves the baby

Piper rubs the belly for luck

Trouble x3

Many of my special needs friends have told me that I will find a "new normal".  We haven't gotten there yet.  At least not one that I am comfortable with.  My life still seems hard.  There are pieces of every single day that I wish I didn't have to do, or pieces missing that I wish I had.  And to be honest, I'm not sure I want to reach that new normal.  Because what does that mean?  Does it mean I've accepted everything?  Does it mean I'm happy with the way things are?  And how will I then adjust again to another huge change, should Anabelle's needs change drastically, as can sometimes happen?  I'm afraid to feel settled, to make too many plans, only to have something jump up and ruin everything.

I try to live small.  I no longer have grand plans.  I try to appreciate the little things that come every day instead of wishing and hoping for more.  Because nothing is guaranteed to us, not even our lives, and the disappointment of "not" has far outweighed the joy that comes from "having" in my life when I have aimed too high.  And I need to guard myself from negative emotions as much as possible because there are enough floating around my life already.  So now the things I let myself look forward and enjoy are simple: a sunny day, dinner with friends, my daughter kissing her baby sister, crawling into my bed at night and having half an hour to myself with a book or a tv show.  It has to be enough.

Things I have that those of you without special needs kids (and even some of you WITH) do not: 1) my baby never cries.  EVER.  She doesn't scream, she doesn't throw tantrums.  If something is bothering her, she has a whine or a plaintive mew, but we might go a whole week without hearing either.  There are certain babies that I know that shall remain nameless (but you know who you are!) that are destined to be horror movie scream queens.  That is not in our future.  I have never spent a night like I did countless ones with Elyse, pacing the floor for hours with a screaming baby, crying, "What is wrong with you??" over and over.  2) my baby will never have the terrible twos+ that I am currently suffering through with my older one.  No tantrums, no backtalk, no attitude.  3) my baby will never argue about what I put on her or how I do her hair.  She is my living, breathing baby doll to play with however I please. 4) my baby will never break my favorite lamp, crash my car, charge up my credit cards or stay out too late.

So many of my special needs friends want answers.  Why did this happen?  What is the prognosis?  What will my child be able to do?  How long will they be here?  I get it.  I really and truly do. That was me for the first few months.  But one day I woke up and realized I didn't care anymore.  What's the difference?  Does knowing what happened with 100 or 1000 other kids change anything for Anabelle?  Maybe if we were talking about a broken leg or a muscular disorder or a GI problem, but this is the brain.  Anything can happen in the brain.  I don't care how many other kids we may find with the exact same diagnosis as Anabelle, every one of their brains have formed in a different way, and the results are going to be different for everyone.  I don't want a doctor to pigeonhole my child.  The only one who decides what Anabelle is capable of is Anabelle.  My job as her parent is the same as my job for my typical child: to provide her with every tool it is in my power to get to allow her to succeed to her fullest potential.  I cannot ask any more of her, and I cannot ask any more of myself.

Working hard in therapy

So, as I write this paragraph, it is now Mother's Day, and in four days Anabelle will be one.  One year ago today, I was anxiously anticipating her arrival, my biggest worry being how Elyse would adjust to the new addition, and how I would possibly manage two kids.  Those worries quickly faded as I had a heck of a lot more to worry about Elyse dealing with, and the addition of a full-time nurse pretty much made the other worry moot.  But I want to wrap this diatribe up and hopefully bring it back to the love letter I intended.  All of you who have met Anabelle, and even those of you who only know her from a distance, know how incredibly special she is.  I don't think I'm just saying this as her mother.  There is something about her sweet face and gentle demeanor that just draws you in.  The way she smiles when she hears you talking to her.  The way she nuzzles into your shoulder when you hold her.  The way she turns towards you when you kiss her cheek so that you end up kissing her mouth.  The way her whole face lights up when she hears her sister, especially if she is singing or laughing.  This tiny soul, my forever baby, brings a kind of light to everyone around her that I have never witnessed in another child.  And while I would give anything, even my own life, if it would "fix" her, I have learned to selfishly enjoy the kind of person her condition has lead her to be.

So here we are after one year: terrified and apprehensive about what the future will bring, but so very thankful for every blessed day that this precious little soul is in my life

Three days old

I had a lot of touching reactions to this message, and if I intend to document our life with Anabelle Rose, it seems only fitting to start there again.  The first year is gone, I don't know that I intend to revisit it, but I think that if I know it is my plan to update here, I will remember to live more in the moment, so that I have anything interesting to share.  To participate in my life, and also try to view it from an outside perspective.  Thanks for putting up with me as I slog through the blog...hope it has anything redeeming for you all as well!