Love is a song that never ends

Wow.  It's been over five months since we updated Naomi's blog!  We do post more regular updates on Naomi's facebook page.  Her facebook page name is Naomikathleen.blogspot.com.

I started writing this post probably two months ago and never finished it.  Things have been very hectic around here.  We have had a lot of projects going...we took a big week long trip to Disney in November!  Naomi absolutely LOVED it and was pretty much a perfect angel the entire trip.  Lydia loved it too, and was up at 4am at one point saying "Daddy.  Stroller.  Walking.  Little Mermaid."  We realized that our current home does not meet Naomi's needs over the long term, and will be completely unsuitable within the next 18 months.  So, we bought land and are working on building a house specifically tailored to her needs.  We should move in the next year to 15 months.  Lydia turned two in November and has become even more of a human tornado than she ever was.  When she wakes up in the morning it is like she has been shot out of a cannon.  And she doesn't stop until she goes to bed.  Also, most days she does not nap.  Lastly, we are awaiting the arrival of Naomi's baby brother in March.  So between big trip, wild two year old sister, house project and new brother coming, we've been busy!  Neither of us have much energy left for anything except the children.

On another note, Naomi has been absolutely delightful the past few months.  Happy, sweet, rarely if ever screaming.  So pleasant.  Like our old Naomi that we missed so much over those many many many months of endless screaming.  We realize it probably won't last forever, be we are oh so consciously enjoying every single moment of it now.

After that intro, here's the post I started working on in December.

Love is a song that never ends
Life may be swift and fleeting
Hope may die yet love's beautiful music
Comes each day like the dawn

Love is a song that never ends
One simple theme repeating
Like the voice of a heavenly choir
Love's sweet music flows on

Lydia is really really really in to the movie Bambi these days.  The lyrics above are to the opening and ending song of Bambi.  They make me think so much of Naomi, and what life with her is like.  In a lot of different ways.  Naomi turned six years old at the end of October.  It is hard to believe that she has been with us for six years.  It is hard to believe how hard the past six years have been, for her, for us.  It is hard to believe we remain married after these past incredibly hard six years.  Naomi and her illness, and illnesses, and ups and downs, and behavior problems, particularly the refusal to eat and her at times unending screaming, have tested our vows more than I ever imagined they would be tested when we recited them to each other on that beautiful late spring day in Pittsburgh 12 years ago.  To me, the fact that we are is both a testament to our commitment to the promises we make, and also to our stubbornness.  There have been many, many many many, times that it would have been so much easier to permanently part ways that it was to continue on together.  It would still be easier, really.  Not that there is not love.  There has been just so very much water under the bridge.  So very very much.   I don't know what it is like inside other marriages, but I do know that marriages that involve a profoundly disabled child fall apart at a much higher rate than marriages involving only healthy children.  I follow many blogs and social media pages chronicling families with children like Naomi.  And we are not unique.  Many fathers, and a fair amount of mothers, choose to just walk away.   Maybe something about this life has made us fairly cynical, but we often scoff and roll our eyes to each other when couples make what seem to us to be gratuitously self congratulatory posts about the strength and awesomeness of their love on social media sites. Not the "Happy Anniversary to my lovely wife!  The past ten years together have been wonderful and I am more thankful every day that I met you" type,  More the "Our love so special and so magical!  Everything always comes up roses for us! We're the most greatest couple that ever was!  Every day is like Christmas and every night is like the Fourth of July!"  You know what I'm talking about.  It comes across to us as, well, bragging.  And yes, I get social media is about two things primarily.  Okay three.  1.  Bragging.  2.  Complaining  3. Promotion.  Heck we promote this blog on our facebook pages!  It's not that we are not happy for other people's happiness and good fortune.  We are.  But if I am honest, and I try to be painfully and transparently honest on this blog about what life with Naomi is really like, I guess there is a bitterness there, and dose of jealously as well, that sometimes makes other people's apparent good fortune a tough pill to swallow.  And I think these feelings of bitterness and jealousy have been magnified by some of the callously cruel treatment we have received from people who we thought  loved us and supported us, but instead viciously turned on us because, um, we had the audacity to have a disabled child and that inconvenienced them and made them uncomfortable. And also, if Naomi had been healthy, well, that could be us, and that is how we thought things would be for us.  We got along so easily and effortlessly prior to Naomi's devastating illness.  And all of the other stresses in our lives seem like they would be so much more manageable if Naomi were a typical Kindergartner getting on the bus with all of the other kids every morning. I think it also comes across as a little naive and, well, lacking in self awareness.  Part of what is so great about living in contemporary America is that bad stuff really truly usually does happen to other people and I wonder how many of my fellow Americans really get that.  Okay, how many of my fellow middle class and above Americans really get that.  No, it's not a contest of whose life is the best and whose life is the worst.  Ours is certainly neither.  In fact, there are many situations that I know of personally that I think are so much harder than ours with Naomi, and many situations that I don't know personally that are so much worse even than those.  As I have often said, Naomi will never be a child soldier, or trafficked in the child sex trade or any of those just absolutely utterly awful awful things that happen to children.  She is loved and coddled and pampered and spoiled in every possible way, and will continue to be forever and ever until the end of her days.  So what is my point.  I guess I would ask for a little humility from those who are riding a big wave of good fortune, and an awareness that but for the grace of God, and random genetic malfunction, you could be where we are and we where you are.

We have also learned a number of things since Lydia came in to our lives.  We used to wonder which was harder, to have a child like Naomi who never developed much at all, or to have a child develop normally for a while and then sicken and pass away, or be taken in a tragedy.  We now know the answer.  It would be much harder to lose Lydia after two years of typical, wonderful, fascinating, amazing, mesmerizing development that it has been to have Naomi never develop at all.  With Naomi, we have a finite loss. We have a loss of our expectations for how things would be.  Losing Lydia would be an infinite loss.  For all of those families who have lost a one time healthy child, my heart is torn out for you.  You have suffered much more greatly than we have.  And, yes, I believe suffering can be quantified.

Here's the other thing that Lydia has brought in to our lives, besides herself of course.  Naomi no longer has to be anything except Naomi.  Maybe that sounds odd, or wrong or sad or something.  Of the many hard things about Naomi's profound level of disability, one of the most poignantly painful has been the grief over all of the things she and we have been missing.  All of the typical things parents look forward to enjoying with their children...the big milestones...walking, talking,  Hearing your child say your name, or say, as Lydia does, "I wuv you soooooo much." while wrapping her arms around you.  Seeing them get excited about new things, enjoy holidays, interact with the children of your siblings and your friends. Enjoy eating food.  Hearing them say funny things.  The whole time I was pregnant with Naomi I kept saying "I can't wait to hear what she has to say."  I'm still waiting.  We can communicate with her flashcards, but it certainly isn't the same.   We tried so very hard to fit Naomi's way of being in the world in to our way of wanting to enjoy her in this world.  Truly it was not fair, for her or for us.  Every holiday and party she hated.  And we were despondent and disappointed.  Now, Naomi doesn't have to like holidays.  Lydia likes holidays.  So Naomi is free to do what makes her happy, which is be in another room away from the noise and hubbub and change in routine that she so despises.  Also, all of the things Naomi cannot do no longer hurt so acutely.  Lydia fills that void, so Naomi is, again, free to just be Naomi.  Somehow, with Lydia in our lives it is so much easier to just enjoy Naomi for who she is, free of any expectations to be anything else ever.  I realize everything I have written in this paragraph is anathema to modern American parenting which is supposed to be based on self sacrificial martyrdom, especially for mothers.  I don't care.  I do now and I have always rejected all of that nonsense.  Not only is it misogynistic, I also think it is unhealthy to raise children as the center of any universe.  And, if we are being honest, we have children for many diverse reasons, most of them based on pleasing some need in ourselves.  I don't think those reasons matter, as long as there is love and kindness in their home and in their upbringing.

I also think about love. Like in the song.  When life goes on, generation after generation, it is a song that never ends.  The love all our ancestors bestowed on their children has flowed down through the centuries to us and through us to our children, who will pass it to theirs and so on and forever as long as the human race continues to reproduce and parent children.  I feel that so strongly now.  See it blossoming in Lydia.  And in Naomi.  But what happens to the love in a marriage that dissolves.  In a friendship that sours and ends.  In a family that is fractured and estranged.  In a child who passes too soon.  I don't know.  I can't know,  Not yet.  Naomi's life will most likely be swift and fleeting.  I'll let you know if and when I come to any conclusions.

And now, some pictures.

The first two are Naomi all ready for school this past fall.  Naomi has decided that she hates the camera and hates having her picture taken.  I get a lot of side eyes, or grimacing, or looking away from the camera.  She especially hates the flash.  She used to love the flash and would smile, laugh and giggle every time it went off, which made for a lot of really great pictures.  Oh well.  The second picture is funny because you will notice that Naomi is sitting on the floor in front of a blanket covered mattress.  Naomi has regular, what we like to term, Blow Outs.  These are explosions of liquid feces that go everywhere.  It's a terrible mess and she and we get very upset when they happen.  It is very hard to keep the bowel habits of children like Naomi regulated, and so this is one of the issues that we deal with with Naomi.  Naomi had an accident on the couch over the summer that was so bad that the couch could not be cleaned.  So we had the mattress on the floor until we got around to getting a new and inexpensive couch.  Naomi loved the mattress on the floor.  She had more room to move around and more room for adults to snuggle with her.  She doesn't like tight spaces.  At all.  So in Naomi's new house there will be a day bed in the living room for her to enjoy.

Naomi got new braces for her feet.  Because she does not walk, her calf muscles shorten and need to be stretched.  These are braces she can wear at night to help accomplish that.  She only minds them when she is very tired.  

The next three are a classic example of what I get when I try to take Naomi's picture now.  Squinting at the camera, then hiding her face, then laughing when I tickle her and ask her if she's tricking Mommy.  She knows she 's being uncooperative and she thinks she's hilarious for being so.  

That's Lydia.

More examples of Naomi's behaviors when it try to photograph her.  Oh, and there's the super cheap basically disposable new couch.  We love it.  It's great.

Lydia in her matching outfit walking around in what she said were her shoes.  

Another morning all ready and waiting to get on her van.  Which she still loves.  

Oh, this one.  Naomi had croup again this fall.  Right before we went to Disney.  So close to when we went that we were afraid we would have to cancel the trip.  Her pediatrician okayed her to go in the end and like I said above, she had a fabulously great time.  She spent two days in the hospital and then another week recovering at home.  She was really really really sick.  Rob woke up in the middle of the night hearing her gasping for air and took her straight to the emergency room.  It was really scary.  It came on so suddenly.  We put her to bed with the beginnings of what seemed like a little cold and a few hours later she was, well, unable to get enough air in to her lungs.  We are so thankful Rob heard her.  That's one of the very scary things about having a child like Naomi.  She can't get out of bed or call to you to tell you that she is sick and if it happens in the middle of the night, well, you can find her when its already too late...

I can't stand the thought of that. When it's time to say goodbye I want to know it and do it purposefully and lovingly and I want her to be in our arms.  We were there when she came to be and we want to be there when she passes on.  I pray that is how it will be for her and for us, and not a horrible discovery we find on a morning we thought was going to be like any other, knowing she was alone when it happened.  Our sweet baby girl, she loves to be with us. 

Here's a picture from Disney.  I couldn't find the rest of our pictures, but in this one she is meeting Princess Sophia.  As it turns out, Naomi loves the princesses.  We had no idea.  So we make princesses a much bigger part of her experience now. 

Naomi at the joint birthday party we had for her and Lydia.  Their birthdays are only two weeks apart, and Naomi has hated just about every party we have ever had for her, so it just makes sense to celebrate them together.  Also, because Lydia was quite happy to be the center of attention, Naomi was able to contentedly watch shows by herself in a quite room away from the commotion.  She was not ignored, though. There was always a guest keeping her company, mostly her grandparents, which is just how she likes it. 

Naomi lost her first two teeth, about a week apart.  The first one at Disney, and the second one right after we got home.  Her new teeth are already most of the way in.  She's getting to be such a big girl.  

Lydia on Christmas Eve at my parents house, which is the big celebration with my family.   Like her big sister, she also hates the fancy dresses Mommy makes.  This is the same dress Naomi wore for the Christmas when she was two.  Lydia repeatedly demanded "DRESS OFF!" 

And here is Naomi in hers.  It's the same one she wore last year, as it still fits and with as busy and exhausted as we, especially me, have been, I did not have the time or more importantly the energy to make a new one.  That made me a little sad, but really, she hates them anyway!

However, I have learned a few things over the years and one of those is to bring pajamas to change the children in to at the Christmas Eve party when they get fussy and are just done with their fancy dresses.  Here is Naomi watching her shows in her wheelchair in the same room as the rest of the family, in her Christmas pajamas.  Ah, that is another new development.  We finally gave in and filled a prescription for what we call "fussy medicine" or in other words, klonopin.  It's a drug used to treat acute anxiety and distress and it has been wonderful for Naomi.  We use it very rarely, mostly in situations where she normally gets very upset and screams inconsolably.  A side effect we have noticed is that she is less easily distressed and anxious in general.  I think the drug is helping her learn that new situations are not to be feared.  If you've ever taken something like xanax or ativan before a surgical procedure, you know how Naomi feels in this picture..  Like she's just relaxed with a good glass of wine or two.  We wished we had embraced better living through pharmacology for Naomi much earlier.  It was kind of like the feeding tube.  We fought that for years too and then when we finally got it, it was like What have we been waiting for???  Our biggest goal has always been for Naomi to be happy.  

And Lydia in her Christmas pajamas.  I know they are ridiculous, but I could not resist and if you know Lydia you know just how very appropriate these pajamas are for her.  

Lydia on Christmas morning.  Note it is still black as night outside.  Speaking of how Lydia makes things easier, I picked out this kitchen set to get for Naomi, eventually, when she was a newborn.  Playing house was my absolute favorite as a child and I couldn't wait for her to play it too.  Of course that never happened.  With Naomi.  But it happened with Lydia!  And she loves it.  Another demon exorcised. 

And rather than trying to force Naomi to be in the same room as the rest of us, opening presents, which she always hates (see posts of Christmases past) and all of us being upset and crying, Naomi had a private Christmas the same place she spends every morning, on her couch in the TV room watching her shows.  We put up a tree for her in there and Santa left her presents on her couch next to it.  She was happy. And we were happy.  

Lydia pretending to eat the fish that she got with her kitchen set. 

Naomi and Mommy having "snugs and bubs" on Christmas morning.  That bottle has some of the special fancy juice that Santa likes to leave in Naomi's stocking for her. 

And here is Mommy opening Naomi's presents and showing them to her while she happily watches her shows.  She did look over at every present, too.  Which was nice.  She got a lot of clothes and children's costume jewelry and hair accessories.  She likes that kind of stuff, a lot.  

Naomi likes to be snuggled up under this quilt my mother made in the morning.  And Lydia is sitting on top of her playing.  Naomi is not all that pleased, as you can see her stop hand is up.  Lydia is affectionate with Naomi, she gives her hugs and kisses, and most of the time Naomi is nice enough to accept the affection without complaint.  Most of the time.  This was maybe a little over the top. 

Naomi is her new fancy winter coat Santa brought her.  

And all ready for school on a January morning. 

That's it!  I'll try to post again before another five months are up, but do check her facebook page if you use facebook.  With our hectic, busy and exhausting lives sometimes it's just a lot easier to take a picture with my phone and post it with a little blurb.