Monday, February 17, 2014

Naomi's First Summer

I've been told repeatedly that "people" want to know Naomi's story from the beginning, so this is the next installment of Naomi's story prior to the start of this blog in August, 2011.  It covers her 7th, 8th and 9th months, in other words, her first summer.  It was 2009.

Here is Naomi in a dress and bonnet I made for her seven month old pictures.  I had her picture taken every month because we were told we would not have her very long and I wanted excessive documentation of her life.  I also have a large shrine (landfill) in the basement that contains every durable item Naomi has ever touched or used.  Rob threw out her broken highchair 2 years ago and I am still mad about it.  Because broken plastic baby stuff is VERY important for preserving one's memories, right?  Maybe not so much, though I choose not to help myself either.  It was fun and also sad taking her every month to have her picture taken.  Sewing was a big part of my coping at this time.  It still is, when I can find time to sew, which has been very rarely recently.  It is when I think and clear my mind, process thoughts and emotions.  It is also when I make progress.  I have worked so very hard with Naomi and made so very little progress.  It is painful to see all of my efforts come to mostly nothing.  So the production of something tangible and relatively durable when I sew relieves a lot of the anxiety that builds around caring for Naomi.  At this time I exclusively sewed things for Naomi.  I would sew while she napped and then dress her up in what I made and take her picture.  For example, see the picture below.

Rob enjoyed taking her for walks around the yard in her baby bjorn.  She really liked being in it.  I have a feeling she would still like it, if they made them for 5 year olds and if it would not kill his back to wear her in it. 

When I look back, Naomi really was in some ways very easy to care for at this point, compared to how she is now.  In most ways, now that I have cared for a typically developing child for 15 months and hopefully counting, I also realize that Naomi's was very difficult to care for as well.  Typical kids are a breeze.  I have been repeatedly told to "watch out!" once Lydia reaches this or that phase, because then she's going to be really difficult.  Except that she gets there and it's not, compared to Naomi.   Here are some of the ways she was easy.  Naomi transitioned from co-sleeping with me to sleeping in her bed from 8pm to 630am in one night.  One night she was fussy and would not settle, I put her in her crib to sleep instead of keeping her with me.  She cried for 20 minutes, fell asleep and slept all night that night and every night after that.  In fact, I made the dress above the night I sleep trained her.  Anyone who has children knows it is never that easy. She was very portable and mostly agreeable too.  She was surprisingly flexible.  I say surprisingly because she is extremely inflexible and wedded to routine and familiarity now.  And there is absolutely nothing that is easy about caring for her.  I wish we had known to take advantage of this phase and had done more things that are difficult to impossible to do now, like travel.  Of course, I was so extremely depressed then that it is hard to imagine doing much even if we had known.  We did, however, take Naomi on a trip to Cabo San Lucas, Mexico.  Dear friends of Rob's from his college days, Zee and Andrea,  invited us to their time share with them.  We wanted Naomi to have as many experiences as she could, and to meet as many of our friends as she could, so we jumped at the invitation.  It was a wonderful trip.  Away from our regular lives, it was easier to let reality recede a bit and just enjoy being a family.  It was on this trip, at a McDonald's in Front Royal, VA, on our way to Dulles, on my 34th birthday, that Naomi laughed for the first time.  It was a thrilling, magical sound. She still giggles and laughs a lot.  She likes to be silly, and she likes you to be silly with her.  It was also on this trip that Naomi started tracking objects.  She was 7 months old.  By comparison, Lydia was tracking by the time she was 2 months old.  

This was how we fed Naomi in the hotel on the trip down.  She was SO EASY to feed.  She would eat anywhere.  

She would even eat in her seat on an airplane in flight.  It was fun to feed her.  

I called this her Magic Garden swimsuit.  Remember that show?  She wore this bathing suit a lot that summer, as Grandma and Poppa put in a pool that year too.   

Here we are the morning after we arrived in Mexico.  The house was situated on a cliff overlooking the Pacific Ocean.  Our room was behind us and faced the infinity pool and the ocean.  It was beautiful.  And no, I am not wearing bicycling bibs as my sister has suggested.  I was wearing my nightgown.

Why not dress your child in a cover-up that makes her face the center of a flower?  

Loved Daddy.

Wearing the sunhat that reduced me to tears the day we got her first Batten's diagnosis, a few months previous to this.

Naomi fell asleep in the pool in her raft all the time, both in Mexico and back at home.  She has always loved the water.  She is still using that raft.  Now we call it her boat, and she makes it go by kicking with her feet.  I don't know if she will be able to use it again this summer.  She is getting so big. 

Of course she finished her nap on a lounge chair by the pool.  She took a few naps poolside at Grandma and Poppa's this past summer too.  

Naomi enjoying the scintillating conversation at lunch. 

At the marina in Cabo. 

Lunching with Daddy in downtown Cabo.  
We got back from Mexico with a lot of happy memories and continued on as best we could. The Pens were in the playoffs that summer.  Naomi and Daddy watched all of the games together.  He had a lot of fun with her.  She mostly no longer tolerates anything on the TV except her shows.  Like I said, she was so much easier then.
We bought her an  Iceburgh doll at the first Pens game we attended after she was born.   She loved it.  She would stare at it, probably because of the black and yellow contrast, and when she learned to use her hands to reach and grab for things she would bring it to her mouth and chew on his beak, which was all very cute thrilling for us

This is Naomi looking devious.  I loved these pajamas. They have lady bugs on them.  Naomi loves Ladybug Picnic from Sesame Street and we now live in a house that could well be considered a ladybug sanctuary. 

Naomi also took her first boat ride that summer.  Rob's parents belong to a boat club on the Allegheny River.  Rob spent a lot of time there as a kid, and actually even swam in the river.  In the 70s and 80s.  He probably has secret super hero powers from all of the toxic chemical exposure.  Someone let me know if he does, and if he uses them for good or evil.

Naomi on the boat.  She was blah about it.  In following years she hated it, and the past two summer she loved it.    She likes like to lay on the floor of the boat and have the wind rush over her.  Naomi LOVES to have wind blowing on her face.  And cold air.  And especially cold wind.  She may be part Yeti. 
We spent enormous amounts of time on our screened porch that summer.  It was a great porch.  The backyard was filled with oak trees and sloped steeply away from the house, so the porch was nestled among the upper branches of the trees.  It was like a tree house and was far and away the best thing about that house.  We saw all kinds of birds, especially woodpeckers.  Even a pilliated (Woody Woodpecker) woodpecker.  They are very large up close.  Naomi loves loves loves to be outside.  We intend to put a large screened porch on this house this summer so Naomi can spend more time outside, and so I can be protected from mosquitoes and wasps while she does.  She ate most of her meals out there and had most of her baths out there.
An alfresco bath after and alfresco dinner. 

Cozy and comfy in her pajamas, relaxing with Daddy on the glider on the porch before bed.  We still have the glider; it will be on the new porch.  

Naomi took her first of many trips to the Outer Banks, NC.  We were in Kitty Hawk and could see the Wright Memorial from the house we rented.  It was Naomi's first of many vacations with her vacation buddies Bill and Sarah. Auntie Sarah, Uncle Brent, Grace and Margot were there too.
Naomi loved the hammock.  Maybe the new porch should have hammock as well as a swing and glider. 

Napping with Mommy on the beach. 

Snuggling with cousin Grace on the porch overlooking the Atlantic. 

Swishing her feet in the sand.

Enjoying the sun and warmth in her sand chair. 

Later in the summer Naomi discovered that she could spin in circles on her back by throwing her legs to one side, digging down with her heels, and rotating her body.  She was 9 months old.  I can't explain how thrilling it was to discover our child in a different position than the one we left her in.  She started moving around in her crib too.  Not long after that, we had to stop putting blankets on her when she slept because she lacks the ability and wherewithal to swat them away from her face.  So we had to start dressing her in multiple layers of pajamas to keep her warm at night.  We recently discovered that once she falls asleep she does not move much other than rolling from her back to her side and back again.  Now we cover her up with blankets when we go to check on her before we go to bed.  It is very satisfying in a very primal way to cover my child with a blanket.

Naomi moving around in her crib when she was supposed to be napping. 

Being silly modeling another of Mommy's creations.  Naomi is very proud of her silliness and gets the biggest smile if you notice her silliness and comment on it. 

Naomi used to have a fear/hatred of new places, especially of big box stores, especially Lowe's.  I started trying to desensitize her by taking her out some place every day.  She would usually scream and cry and then stress sleep.  So we would go home and she would finish her stress nap in her car seat in the house. It kind of worked.  Kind of not.  Now when we want to take her someplace new we bring her portable DVD player and the tray for her wheelchair.  If she can focus on her (familiar) shows she can usually tolerate a new place. 

Naomi started reaching for objects not long after she started tracking them.  It was very exciting.  She made a lot of exciting progress for the first 18 months.  She was still extremely developmentally delayed, but she was also making constant slow steady progress too. As upsetting as slow progress can be, no progress is worse, having experienced both.  Even worse than no progress is regress.  We've experienced that too.  
She was not yet terrified to touch new things either, which was nice.  It was fun.  

Naomi getting her ring stacker.  She would NEVER do this today. 

Just because I like this picture. 
I was also working very very hard on Naomi's therapies with her, which she hated.  She cried the whole time.  Every day.  Every single day I had to make her cry for long periods of time. It was very hard to take, especially in my very depressed state, but I was desperate to help her and believed that if I worked hard enough I could make a difference.  Below she is practicing weight bearing on her arms.  She tolerated it better if I kept my face very close to hers.  It is not easy to be face to face with your baby while she cries for you and not end the activity that is making her cry.  I don't have a lot of sympathy for mothers who complain that they can't do basic things with their children, like discipline them for bad behavior or not feed them junk food they want, because it is too upsetting when they cry.  I was always a compassionate, though perhaps prickly, thorny, person.  This experience with Naomi has made me infinitely more compassionate when it comes to real problems.  It has also made me extremely not compassionate and even intolerant of fake/invented/self-inflicted/nonsense "problems".  I have found that this experience is common among parents of children like Naomi.

We also took our first trip to Boston.  After the University of Pittsburgh could not identify which type of Batten's disease Naomi had we were sent on to a Batten's expert at Mass General.  Naomi had more blood drawn and another skin biopsy.  That was in July.  Daddy took Naomi sightseeing while we were in Boston.  Mommy was struggling with a hideous attack of her chronic insomnia and so she was trying to rest in the hotel room.  Naomi was not struggling with insomnia and slept through most of their sight seeing, as you can see in the pictures below.
Blood was drawn from her right arm and the skin biopsy taken from her left.  I hate the scar from that biopsy. 

Naomi using her hands to play with a toy in the hotel in Boston.  I got so comfortable with her doing this so quickly.  I never imagined she would stop.  I wish I had reveled in it even more than I did.

We heard pretty much immediately that they and the two independent pathologists that they contract with did not necessarily think Naomi had Batten's disease, but that maybe she had a different type of lysosomal storage disease.  So they started testing her for all of the 10 known types of Batten's disease and also an enormous list of literally dozens of lysosomal storage disorders and related disorders.  In August we started getting results....she didn't have this one, she didn't have that one.  It gave us hope.  They did tell us that she was heterozygous for CLN5, the type pf Batten's with which they eventually diagnosed her.  That means that they found she had a mutation on one copy of that gene, but they presumed that the other copy of the gene was fine.  So in August 2009 we were told she did not have CLN5 Batten's disease.  
After Boston we spent the rest of the summer in the routine we had established.  Therapy for Naomi 3 days a week, lots of time on the porch, lots of time swimming at Grandma and Poppa's.  Lots of time playing with Naomi.

Sweetly sleeping all tucked in with Iceburgh.

Naomi has always liked to be "attacked."

Practicing standing at her music table.  She loved her music table and for a long, long time she loved standing. 

Here I went to check on Naomi after she did not fall asleep for her nap and I found her playing wildly with her mirror.  We had to take it out of her crib, as choose to stay awake and play rather than sleep.  Funny and cute.  Not to be defeated, Naomi would go on to find many ways of staying awake and playing instead of sleeping.  

Naomi with her collection of 'microbes.'  She LOVED these.  We had/have probably a dozen of them.  She still likes to play with them.  

Ta da!

Another way to practice weight bearing.  She loved that toy too.  Her farm.  The sun at the top had a flashing light  that fascinated her.  I will never as long as I live forget the sounds and songs of that toy.  Neither will anyone else that spent a significant amount of time with Naomi.   Naomi was all about her farm that summer.  And fall.  And winter.  By spring she had a new favorite toy, Eeyore.

So, here we were at the end of Naomi's 9th month. We were receiving report after report that Naomi was negative for this and that disease.  She had learned to see, to reach and to use her hands.  She was making slow but steady progress on her developmental milestones.  We were beginning to hope again.  We were beginning to see a future again.  Ha ha.  The worst was yet to come. 


  1. Hi Anne.

    I am a friend of Sarah's and I have been reading your blog. I just wanted to pass on my admiration of how well you cope with what must be an impossible situation a lot of the time.

    I know that seems a pretty worthless comment but I really don't know what to say, I just wanted to say something.


    1. Thank you, Nicole. I actually read your blog as well.