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she was always sleeping with her mouth open

she was always sleeping with her mouth open

I have felt compelled to share this story in hopes of encouraging people and opening their eyes to another world of people.  “Little people”.  They are not funny or awesome or cute…they are people like any other.  They come into this world and are loved just as a “normal” baby.  They are wonderfully and fearfully made in the knowledge of the Lord.

I am filled with sad/happy/reflecting thoughts today about my little baby girl Josie.  Josephine Marie Garcia was born August 2, 2008.   She was one week early, weighing 6lbs 5 oz, 18 inches long. There have been many trials and triumphs this year.  Many changes good and bad, many memories,moments, times.  Mostly I just can’t believe that she’s a year old.  I know that since she’s my fourth child time goes by quicker, but it is truly much more than that.  It would be hard for anyone to understand what that means except for Nick and I.  Even the closest family and friends could never really feel and know everything that has happened this year.  I will do my best to explain so hold onto your seat, and grab a box of tissue (I am already near tears just thinking of what I’m about to write).

Our little Josie was not a “planned” baby, but like many surprises in life she was waited for with expectancy and excitement just the same.  The pregnancy was much like my other three.  I really have always loved being pregnant.  By the time I was near the end I already felt bonded and connected to this new little life that moved inside me.  If any of you have been pregnant during the summer heat with a swamp cooler, you can imagine how the end of the pregnancywent as far as comfort.  I sat in front of the cooler with ice water hoping the other kids wouldn’t do anything that required me to move from that spot.  Of course they did, but a girl can dream can’t she? 

Josie was finicky from the start, I might add.  I have never heard of this happening to anyone else, but she only allowed me to sit in certain postitions.  If I sat too straight she would kick in a repeated and steady motion until I moved.  How crazy!  I knew than we were in for it :)

picture taken by miss Isabel

picture taken by miss Isabel

When the time came to have Josie, she didn’t want to come.  I was in labor for 12 hours and stayed at 4cm for 6 hours before I reluctantly decided to agree to pitocin.  This was my 4th induction.  I can’t even tell you how many hours went by after that.  It’s horrid I know, but I just don’t remember.  After I got my epidural, I sat talking to the nurse and my entourage (Nick, my mom, Peggy, Aleida, and Marla). 

The thing that happened next is so funny that there’s no way I can leave it out.  Have you ever heard a giant water balloon pop?  Well all of us did.  Followed by the sound of a rushing river…my water broke!  Pop! Gush!  The nurse had never experienced that before in 20 some years.  We were all laughing so hard she could barely check my cervix.  I was a “10”  time to push. 

In 30 minutes I went from 4 to 10!  Literally 1/2 push later she was in my arms.  My newest bundle.  I immediately saw that this girl had long fingers and big feet.  She was cute and perfect.  She looked so different from my other three.  I thought how awesome God is for creating everyone unique.

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Later that day, after Nick went home and the kids came and saw her, I was left with this tiny one.  A nurse came to take her for her hearing test.  When she gave my baby back she asked me if I had noticed her legs.  She had bones that seemed to stick out more than they should.  I had but I didn’t think too much of it.  There is a crazy “after baby high” that I have gotten with all of my kids, and my mind was a bit unclear.  I decided not to worry since she moved them just fine.  I knew I had done nothing wrong in the pregnancy, and we are so young that it couldn’t be some deformity right?  God had just made her a little different.

After her doctor looked at her the next morning, she concluded that she had never seen anything like this and that we should take her to a specialist in Phoenix (2 hours away) as soon as we can. 

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Two weeks passed before our appointment, a very long 2 weeks.  During these 2 weeks I was convinced that her legs and feet (which were turned inward) were causing her pain.  She cried all day and night.  I guess cry is the wrong word…scream is more like it.  She slept in bed with me and on a pillow.  At this point It was all I could do to keep her somewhat comfortable.  She was quickly deemed the princess and the pea.  Josie was either held or propped on a pillow at all times.  It was exhausting to take care of such a needy baby with three other kids who needed love and attention as well, all with 3-4 hours of broken sleep a night.

Looking back on it now I’m not quite sure I could’ve survived except with Jesus with me, comforting me.  If you have never had a highly sensitive baby, it may be hard to understand.  I don’t even mean a fussy baby that likes to be held.  I mean a baby that screams for 1 1/2 hours straight, sleeps for 30 minutes, eats and screams again…24 hours a day…through the night…always.  I have told people that the only word that comes to mind is “dark”.  I felt like a walking zombie, trying to remind myself that I loved this baby, this baby is in pain, God alone can keep me safe in my thoughts and carry me through this time.  It was so difficult.  Thinking about it almost makes me depressed again.

I learned many lessons during this time.  Most of which were humbling.  Never again would I think that fussy babies meant they were spoiled.  Never again would I judge anyone who slept with their babies (I always thought it was unsafe), and never ever again would I think that there was a certain way to care for babies.  You can read a thousand books and not know what to do with a baby like Josie.  Maternal instinct is so underestimated.  After all, every baby has different needs and different personalities. 

picture taken by

picture taken by

All through this time, my mind was wondering what was wrong with her.  I knew it was not normal for a baby sleeping peacefully to wake screaming and not even want to nurse.  A mother just knows when something is wrong.  I feared that whatever was going on with her legs and feet would make her unable to walk.  Most painful of all was imagining her life as she got older.  Kids making fun of her and me holding my perfect baby…wishing they could see her as I did– beautiful.  I prayed that I wouldn’t think these things.  We had no idea what was going on in her tiny body.  God alone was in control, and he made her fearfully and wonderfully.

her neck control improved quite a bit after months of physical therapy

her neck control improved quite a bit after months of physical therapy

Finally the day arrived when we went to see an orthopaedic surgeon.  I was ready for an answer.  Ready to just know what it was that made her cry so we could help her.  What we found out was that even this “specialist”  who is supposed to know everything had no answer for us.  We were assured that everything was fine with her.  She just had bone that were more exaggerated than a “normal” person.

she hated baths

she hated baths

I felt a little relieved, but not fully convinced.  Why did she cry?  I began to loose hope in the Drs.  I found that my only comfort could be Jesus.  He knew what was wrong.  I prayed a lot over the next couple of months.  Josie’s pediatrician wasn’t convinced that she was fine either.  She never said it, but the way she asked questions, I knew.  At four months of age Josie  stopped growing at the rate that she was, and was diagnosedwith “failure to thrive”.

I was told to feed her everything I could, and they would watch her closely.  As a mother, and especially a nursing mother, I felt my heart sink.  Was I doing something wrong?  She seemed satisfied after eating (until she started screaming 30 minutes later inconsolably).  I tried my best to force the food down, but she just didn’t like it too much.  She did gain weight very slowly.  Finally at her 6 month check we found out that she had reflux.  What a relief!  She was given medicine and got much better.  Surely now she would gain weight better.

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When Josie was 6 months  we went back to the specialist for a re-check.  More x-rays taken.  This time he referred us to a genetics doctor.  A couple more weeks passed and we were off the the genetics doctor.  He ordered 11 x-rays of her body.  Head, chest, legs spine…every part of her tiny body was filmed.  She was screaming the entire time.  Nick and I looked at each other in the waiting room.  It was like we knew from that point on something was really wrong.  It wasn’t just a guess or a maybe, she was different.  Nick said, “I guess we better get used to this.”  I knew he was right. 

After the genetics doctor reviewed her x-rays, we were called in for another visit.  He showed us the films and explained a bunch of things I don’t remember.  I do remember the way her bones looked on that computer screen though.  Her spine was obviously crooked (scoliosis), and her legs were bowed.  Her little arms looked like dumbbells, and her chest was so small, and the bones so thin and fragile looking.  He said that her bone age was that of a newborn, not a 7 month old.  What does that mean?

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We were told that she has something called skeletal dysplasia.  A general term used to describe that shape and formation of her bones.  He ordered a DNA sequencing test of the COL2 A1 strain.  He told us she was always going to be small.  I asked if this meant she wasn’t “failing to thrive”.  He said yes. 

On our way home I was reading the orthopaedic Dr notes that the genetic Dr gave me.  Some words stuck out.  “Dwarf-type appearance” and  “suspicious for dwarfism”  were some of them. 

I went home and did some research on the matter.  Most all of the over 200 types of dwarfism are connected to a mutated COL2 A1 DNA strand.  The radiologist report also mentioned dysplasia.  I found the evidence convincing.  Although we didn’t know what type she had, she did have dwarfism.  Dwarfism is a funny thing.  It is both considered a disability, and genetic condition, but there is no way to tell what each individual will be like for certain.

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I was so glad to have a diagnosis.  I quickly realized that despite the small step, we were no where near the end.  Each type of dwarfism is different physically.  It is rare that any forms alter social and mental normality.  That was relieving.  I knew she would have a life like anyone else, just a little harder time achieving it. 

I found an online book that really put it well.  The book is no longer in print, but the author has made it available for free here.

If you have some time I would recommend this book to anyone.  It is a touching story from a father’s point of view.  It is also very informative.

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Just a few days later (after this had really sunk in) we moved to Bisbee, AZ from Prescott.  It was a long 6 weeks before we found out for certain that she had dwarfism.  The genetic Dr called me up.  I was ready to know which type she had.  Since every type is different, it is really important to know.  Some types have severe medical complications that need close monitoring, while other do not.  To my dismay, the Dr said that her type is “undocumented”.  He further explained that the mutation they found was not recorded.  Her diagnosis of dwarfism was based on conclusive information from her x-rays.

All the waiting we did for nothing.  I decided that we would be best with an expert.  California was calling us.  Dr. Rimoin at Cedars Sinai  is one of only a very few dwarfism specialists in the world.  He hosts a medical registry for Drs. across the globe.   All of Josie records were sent to him. 

Josie was 11 months old when we finally got some direction.  It took two months, but Dr. Rimoin came up with a preliminary result.  Metatropic Dysplasia.  Here’s a link to information on this type of dwarfism.

After reading this information, it a a good idea to let you know that all of the characteristics are found with Josie, so we’re pretty sure this is what she has.  A perfect match to her physical abnormalities.  This is where we stand 1 year (on Sunday) after the birth of our sweet little peanut.

I feel like I could ramble on for so much longer.  Then I think it would be a book and not a post :)  We are planning a trip to see the dwarfism specialist.  Our insurance will not cover it since she already has a genetics Dr in state.  They are blind and careless to the fact that she needs a Dr who is specialized with her condition.  I have never been the “activist” type, but I can clearly understand why so many dwarfs (or “little people”) are.  There is really an unjust world out there for so many people.  I am thankful to live in America, but no place is perfect.

God is my strength, and will be Josie’s as well.  Our faith in Jesus gives us hope.  We know she was created this way for his purposes.  I am excited to see how she will be used for his glory in the future.  As for now, I thank him for a quiet strength that has befallen upon this home.  With every crooked smile, awkward movement, and floppy waves she gives I am reminded that she is a beautiful child of God.

It matters not that she is barely scooting around at 1 year.  I have no interest in what her “developmental delays” are.  I see a baby who will grow to be a rock of strength.  She will “catch up” when God allows.  It is no concern to me.  She’s a miracle like all babies, but special like few.  Her demanding attitude assures me that she will be strong enough to endure the looks, ridicule, and heart aches that are sure to greet her.  God gave her a personality that matches her trials to come.

When you have a child with needs beyond a “normal” child, there is a special kind of love you have for them.  It is not a love that surpasses your other children.  It is merely different.  It’s a love that rejoices all the more in the little things they do.  The other day I caught her trying to point, something that I didn’t see in the same light with my other children.  When she did, it was such a huge accomplishment.  I am so thankful for all my children.  Lord knows how unworthy I am to have any of them. 

When I think of Josie, I think that God has paid me a complement, not an unjustice, and certainly no punishment for her or us.  He sees me strong enough (or at least I will be) and loving enough and worthy enough to know and raise my gorgeous baby girl Josephine Marie.  For that I am full of gratitude.

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Picture taken yesterday. She’s just over 13 lbs, 26 inches long, and wears 0-6 months cloths (depending on what it is).july 09 209

4 thoughts on “one

  1. tarakeating says:

    hey jennee,
    really sweet. thanks for sharing your heart. i agree with you that this is a compliment from God above who will fit you for the events, joys and trials ahead. i was at the hospital last night with audie and got to watch a program on “little people”. I totally was thinking of your family. It was on TLC called “Tiniest Toddlers”. There was a convention that a couple hosted for other families with dwarfism, I believe it was called “Walking with Giants”. You might be able to find more info and support, etc.
    I love you and all your sweet family. And we all miss you guys, too!


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