Emily's Story

I have decided to copy and paste what I have already written down about Emily's entrance into the world.  I wrote this when she was 26 months old and I as re-read it for the first time in 2 years, I realized time has washed away some of the raw emotion I felt when I wrote this.  And I don't think I could write it in such detail now.  Emily is now 4 (50 months) and is doing wonderfully.  We've had our share of hospital visits and major surgeries, but she's an amazing pre-schooler who we feel to have been blessed with.  A friend recently described it best, "She is the child we never knew we wanted, but God knew we needed."

Here is what I wrote 2 years ago.  It is long and leaves me feeling very exposed, but it is part of our unique journey I want to share and remember:

It is hard to know where to begin.  I have wanted to write about Emily’s story for a while but haven’t found the courage.  Courage, you say, about writing about the past?  A funny thing to fear, the past, but writing about the most significant and important event in my life means reliving all the emotions that came with it.  And I fear that I do not have adequate words to articulate the significance, the impact, the way it has changed my life.  It has been a short journey so far; Emily is only 26 months old.  And yet it seems like so many years ago and also just like yesterday.  I guess the only way to begin is the beginning.  I need to do this.  I want to document this for myself as well as Casey.  I worry one day I will forget some of the details of these events.  They are as much a part of me as Casey’s story, and just as important, but so unique.  I want Casey to know one day how much her sister has shaped my life, our family’s lives.  And how truly faith in God does bring the peace and hope one is looking for.  I in no way want to undermine how special and how loved Casey is and how she has changed my life and the joy she brings to me.  Anyone who knows Casey knows she’s is as unique as Emily is J.

Emily was my fourth pregnancy.  After 3 years of trying to get pregnant and 2 miscarriages, Casey came into our world with wide open arms in November of 2004.  Almost immediately we knew we had been blessed with a very enthusiastic kid.  She was, and still is, a typical kid that has energy just pouring out of her.  Through her endless imagination, her constant chatter and her ambition to learn new things, Casey is an amazing child who holds endless potential within her little 5 (and a half) year old self.  Parents pray that all the hopes and dreams you have for your kid come true. Tom and I constantly wonder what Casey will do when she grows up – an attorney, a fashion designer, a circus performer, an athlete, an entrepreneur?  The sky is the limit for Casey.  When we found out we were expecting Emily all those same hopes and dreams started to bubble up with enthusiasm for our next child. 

Expectations

You know you’ve heard people say, they don’t care if they have a girl or a boy just as long as it’s healthy?  I mean, I know I said it, except I knew I wanted another girl.  A healthy girl, of course. No one really thinks that their kid is going to have something really wrong with it when it’s born.  We just assumed we were going to get another “Casey.”  She would be perfect.  The doctor would count the 10 fingers and 10 toes and we’d go home and start to dream about what she would be when she grew up.   Kind of the auto-pilot parenting we all kind of fall into.  She’ll start to crawl around 7 months and walk around 11 months.  Just like Casey.  We’ll potty train her around 2-1/2 and she’ll start dance or start soccer around age 4, go to school, college, have a career, get married and have a family.  Just like Casey. 

Welcome, Emily Violet Wise.  March 19, 2008

                              Emily’s entrance into the world was a lot more dramatic than her drama-queen sister’s.  Emily’s heart rate was dropping so I was shot full of morphine and wheeled into the OR in about 4 minutes.  Emily was born via C-Section before Tom could get his gowned-self into the room.  I don’t remember Emily crying.  God I wish I did.  I know she did because Tom and the doctors told me she did.  But to this day, I try to remember that monumental moment when you hear your newborn’s first shout to the world that she’s here and is really pissed about her new home outside of you and I cannot.  I remember shaking uncontrollably from the morphine.  I remember Tom and the doctors telling me her heart rate was normal and she was just fine.  Perfect even.  Emily was a typical newborn.

My parents brought Casey up to meet her new sister that same day and I had to eventually ask them to leave.  Nausea from the drugs was setting in and I didn’t want to ruin Casey’s excitement about her new sister, and the new princess set her sister got her, by seeing mommy throwing up everywhere.  And boy did I throw up everywhere.  In the delivery room.  In the elevator going up to my room.  And all evening.  Emily and I didn’t get much bonding time those first few hours.  She got lots of bonding time with Tom, who managed to sneak away from me vomiting to make a run to Chipotle, bring it back and eat it in the room in front of me.  Yep, I’ve got no problem remembering that:  him sitting there with his fajita burrito smiling at Emily while I’m heaving my brains out just hours after a C-Section. 

A mother’s instinct or nudge from above?

              Exhausted from being so sick, the nurse took Emily to the nursery that night so I could get some sleep.  Tom slept in the room with me that night.  Every couple hours the nurse brought Emily to me to feed her.  She was perfect.  She had such a sweet little face.  The longest, prettiest hands and fingers ever!  What hair she did have was white blond.  She was so snugly.  Sometime in the middle of that night, I started to get a nagging feeling.  I guess it probably was Mother’s Intuition, but really it was almost like another being was speaking to me.  Okay maybe it was all the drugs I had been given that day, because I can’t say I’d ever really had a true spiritual moment before, but it really was a sense much greater than my own.  I started to wonder if something was wrong with Emily.  She looked perfect and was feeding fine.  None of the doctors or nurses were concerned.  Her vitals were good.  I guess deep down I knew in the middle of the night that something might be wrong with Emily.  And you know what?  I was completely at peace with it.  Like I said, what I felt was something greater than my own normal emotions.  I like to think God was with me and Emily in the wee hours of that night granting me peace.  Because in a couple of days all hell broke loose.

The next morning I told Tom I thought something might be wrong with Emily.  I had asked a nurse what babies with Down Syndrome look like the night before.  We discussed that a little and she said she would pass on my concerns with the pediatrician when she did rounds.  Later that day the pediatrician said Emily did have a couple of characteristics of a baby with Down Syndrome, and would have a geneticist with Cincinnati Children’s come in the next day to evaluate her.  I went into freak out mode.  I didn’t think something was THAT wrong with Emily.  Tom and I were so scared.  Panicked might be a better word.  I remember thinking, “Oh my God, what are we going to do if she has Down Syndrome?!?”  We cried a lot that day.  It’s funny though, I remember those being quiet tears.  It’s only in hindsight of the past 26 months that I can label the type of tears.  Quiet, panicked tears were those.  Two of my closest friends came to visit that day.  They each brought me a dose of peace and rationalization that got us through that day.  Jenn, ironically who has 3 siblings with Down Syndrome, was there to steal kisses from Emily’s sweet little cheeks and tell me that she didn’t think that would be her diagnosis.  And Mandy, reminded me I would love Emily just the same even if the doctor said she was diagnosed.   The following day we literally held our breathes as Dr. Saal, the geneticist from Children’s, came to evaluate Emily.  He told us he did not think she had DS and, in fact, told us he thought she was perfect.  He would do blood work though to officially disprove the DS diagnosis and would call us in a couple of days.  100 pounds was lifted off my shoulders.  We were free to go home the next day and live our lives with our 2 beautiful daughters.  It’s funny though, I think something was still nagging both Tom and I.  I don’t think we wanted to talk about any more what-ifs, so we went home not really discussing any possible bad news that Dr. Saal’s phone call might bring.  I mean, she didn’t have DS, right?  What else is there?  What else big could be wrong?

Welcome Home

Saturday, we were told we could go home.  Going home with a newborn is always a little scary (I think).  What if Casey decides she doesn’t like all the attention Emily will get?  Okay, we knew our princess would not like to be de-throned.  But just how would that play out among all of the feedings, changings, and other maintenance newborns require?  We got home late that afternoon.  I decided turning down the narcotic pain medications at the hospital only 3 days post C-section was a bad idea, so Tom went on a hunt of a 24 hour pharmacy to get me some drugs.  Meanwhile, Casey and I colored Easter Eegs while Emily lay nearby.  Did I mention the next day was Easter Sunday?

Easter Sunday has always been a day of conflicting emotions for me.  As a Catholic, it is the most important day of the liturgical year.  The Lord has risen and it is a time for celebration.  It was also the day my Grandma Florentine died when I was in junior high.  I will always remember that moment, years ago, when my parents called us from the nursing home with that news.  My heart is always a little heavy on that day of celebration and renewal.

Easter Sunday 2008
We awoke with Casey wanting to see if the Easter bunny came for her and her new sister.  Of course, the Easter bunny did not let her down and we had a wonderfully exhausting time walking around the house hunting eggs with her and little Emily and the video camera.  That day was also going to be filled with our families visiting to meet Emily for the first time.  Admittedly, by the time Tom’s parents got there, I was exhausted.  Next, my mom and sister, Amy, showed up.  Later, Tom’s sister Amy, her husband, Andy, and their kids, Claudia and Drew were to come.  But it wasn’t long after my mom and sister got here that the phone rang.

I really didn’t pay much attention to it.  Tom got up to get the phone and took it downstairs to his office for privacy because of all the talking of our visitors.  I think he may have been down there 20 minutes or so, before I started to wonder what was taking him so long.  When I went down there, he was at his computer.  I don’t remember if he was feverishly typing or scrolling, or just staring at the screen.  He looked at me and said Dr. Saal called and something was wrong with Emily.  I sat down.

He said she had Wolf Hirschhorn’s syndrome.  He had been trying to look it up on the Internet.  It was rare and it was bad.  All he knew then was there was a 1 in 3 chance that she could die before the age of 2.  If she did survive, she would be severely mentally challenged and likely not speak or walk.  I remember not believing him.  Willing his words to go away.  But he was on the verge of tears.  Tom doesn’t cry. 

What I remember of the next hours may vary from what Tom and our families recall because it all got a little hazy to live through, much less recall.  I remember getting up and running up the stairs (4 days post C-section!) into the family room.  I needed to hold Emily.  To protect her.  I was madd.  Crazy.  Screaming, “Give me my baby!” to my sister who was holding her.  I was aware that my mom and Tom’s dad were in the room and that Tom’s mom was outside with Casey.  I am very thankful Casey wasn’t there.  I grabbed Emily and ran up another flight of stairs to our bedroom.  I held her and cried.  No.  Sobbed.  And screamed.  Tom followed shortly and we held her and felt pain.  Shearing, gut-wrenching pain.  Those tears were agonizing.  Like from your fingertips.  The “why her,” “why us,” “how could you, God?,” thoughts came in later days.  These moments were trembling and horrifying and crushing.  I can think of no other words for those minutes, or hours we were up there.  I’m not sure of what else I was thinking except, “NO!”

Sometime later, a switch flipped in me.  Tom asked if I wanted him to ask everyone to leave.  I thought, no way!  I became very protective of Emily suddenly.  Our families were here to meet Emily, and by gosh they are going to do it.  So we came back downstairs, faces tear-streaked, eyes swollen and faced our families.  By that time Tom’s sister and her family had come.  They looked confused.  Everyone else who had seen my screaming attempt to snatch Emily from my sister just looked shocked.  We never did explain to anyone what the doctor had said when we went upstairs to our room.  I’m sure they heard us crying.  I can only imagine how long it was for them to sit and wait to find out what was going on.  Tom explained what he knew so far.  I don’t remember anyone’s reaction exactly.  I do have a picture of my niece and nephew holding Emily and staring at her with the most loving expressions.  I remember our moms trying to protect Casey from the news and from getting her upset.  I have no idea how long everyone stayed, but as suddenly as that switch flipped earlier, it flipped again and I needed everyone out of our house.

My mom had come down that day with the intention of staying a week to help out, so she stayed while everyone left.  Tom went to look more information up on the computer.  I can’t remember much of the rest of that day.  I know Tom and mom and I spent hours talking and crying.  I remember that it snowed a little.  I remember Tom saying that Emily is ours and we will love her and that is all we need to know for now.  I remember thinking that everyone says that God will only give you what you can handle and that that is so full of s**t.  They didn’t know THIS.  I know my mom read Casey lots of books and colored with her while I just sat and cried.  I’m glad God had lined my mom up in advance to be there.  I wasn’t my girls’ mom.  I was frozen in fear.  And I cried.  Not the quiet, panicked tears of the two days earlier.  These were sobbing, moaning, I-think-I’m-going-to-throw-up tears and the blood vessels around my eyes were burst.

Despair
The next day was Monday.  Tom took Casey to daycare, so she could have a normal, safe, sane day.  While he was doing that, I called Dr. Saal’s office to get an appointment.  I needed to hear it from the horse’s mouth – that day.  From what Tom had read, most babies with Wolf Hirschhorn’s have heart, breathing and eating problems.  So he dismantled Emily’s crib and reassembled it in our room.  She was not going to go unattended at night.  While Tom was able to attempt productive work, I was still incapacitated.  While he was busy working on the crib, I sat on my mom’s bed, shirt unbuttoned, using the breast pump with my mom at my side trying to comfort me.  I remember the sound of that machine whirring as I pleaded with my mom to teach me how to be a good mom to Casey because I didn’t think I could do it anymore.  I felt like a shell of a person.  Cliche sounding, I know, but I felt so empty.  I couldn’t ever imagine having the energy or playfulness again to parent Casey and I certainly didn’t know what I could do for Emily.  I could not feel even one ounce of happiness in my body.  I can only imagine what I looked like sitting there through my mother’s eyes.

Diagnosis  (#1)

Later that day, Tom and I took Emily to meet with Dr. Saal, the head genetiticist at Cincinnati Children's  In the appointment, I assured him that I was not crying out of self pity, but because I felt so bad that Emily was dealt such a hand at life.  Honestly, this was only part true.  I did feel sorry for myself.  What kind of life was I going to lead now?  He went on to tell us what little he knew about Wolf Hirschhorn’s and nothing he said disputed what Tom had found on the Internet.  Wolf Hirchhorn’s  syndrome is when a part of the 4^th chromosome is missing and it affects 1 in every 50,000 children so it was pretty rare. Emily likely would be severely mentally challenged and we would need to see a cardiologist right away.  Most babies with this diagnosis have heart and lung and eating problems.  30 % of children die before the age of 2 due to major organ complications. She would likely not walk or be able to care for herself.  Her verbal communication would be very limited.  Emily would likely go to some type of school eventually.  (These are the statistics I remember being told.  I am not an expert on this syndrome and do not claim they are 100% accurate or every diagnosis has the same outlook as what I remember being told.)
She didn’t look exactly like a baby with Wolf Hirchhorn’s, though.  She was eating fine and showed no signs of trouble or requiring a feeding tube.  Emily was certainly above baseline for a baby with this Wolf Hirschhorn’s.   A pinhead-sized speck of hope for her future?  A future that looked pretty bleak, though, I thought.

But nonetheless I sat in the doctor’s office and weeped at the thought that she might never be able to tell me that she loved me and say, “mommy.”  Even more heart-wrenching was imagining that she might never be able to know how much I loved her. 

After the appointment in Dr. Saal’s office, we had to go to the lab to have blood drawn.  The doctors wanted to check me and Tom’s DNA to see if either of us had passed on the genes of this syndrome.  Genes that Casey would possibly have and therefore pass on to any children she might have one day.  Genes that other members of our family might have.  My sister, Lorie, had just found out she was pregnant.  The weight of it all seems to gather in my chest as we walked the hall of Children’s Hospital that afternoon – 5 days post C-Section.  I wished it would all go away.  Everything.  At a minimum I wished at least the floor would just open up and swallow me. 

Tom

The rest of the week was a blur.  I sat on the couch each day and cried.  I still couldn’t believe that this was our lives now.  What would our lives look like?  How could we plan for anything anymore.  I don’t want to say that I saw our lives as burdened, but I saw our lives as burdened.  Casey went to daycare each day and we just sat on the couch and talked – just me, mom and Tom. 

Tom and I are very different in many ways.  I am extroverted and he is introverted.  I remember thinking on our first date that this was the most boring guy I had ever met.  (I was wrong J)  Super cute, but dear Lord, he didn’t hardly speak.  I am an emotional crazy person and he is so level-headed.  I see situations in many colors and he sees them in black and white.  I am (usually) the pessimist and he is (usually) the optimist. I started to see these differences even more that week and realized how much I needed all of those qualities that I once found unusual.  On Tuesday he just looked at me and said, “Jen, we can’t change this; we just have to accept it and move forward.  We have a choice: we can make the best of this or the worst of this.  It is all up to us – no one else.”  Those words shook me a little.  I didn’t see the clouds part that day, but did realize that there would be a time that I would have to accept what was fact.  I could not cry myself out of this one.  Or even pray myself out of it.  Ultimately I would pray myself through it.  But it was Tom who took the wheel and started to right the ship for me that week. 

We talked so much that week and we became closer and closer as a couple.  He sought out a co-worker who had 2 children with disabilities to discuss “life.”  A big question at that time was if Emily would be able to go to the same daycare as Casey.  I was planning on returning to work after maternity leave and we started to wonder if I would need to quit my job to stay home with Emily (and Casey).  He needed to financially plan for this possibility and I needed to come to terms with the end, or at least a hiatus, of the career that I thought mostly defined who I was.  This co-worker gave us the first piece of advice that would help us take a (baby) step forward in our journey: “Go live your life.”  After much talking between Tom and me we took that to mean that we needed to gather all of the information about Emily’s diagnosis and put it in our back pocket.  Know it; reference it.  But don’t let it be the road map for the rest of our lives.  We decided that day to get season passes to Kings Island for our family.  That seemed like a monumental commitment to our future at the time, but it was our way of saying, "Our lives will not be put on hold by this."

Tom kept drilling those messages into my head over and over again for weeks and months.  He still even has to now 2 years later.  He sees circumstances as either something you can change or you can’t.  There is no in between so there is no point wishing that there were.  He is not cold-hearted about it.  He is really sweet and tells me to feel what I feel, but to realize that there will be a time that I will need to stop and accept reality.  I am not trying to say that Tom didn’t feel all of the emotions I did.  He sat by my side and cried with me.  We laid in bed and cried together.  He seemed to take all of the emotions and made himself stronger - for me, for Casey and for Emily.  On our first date years ago I wondered if I could really like this guy who was so quiet and controlled.  Now I have realized that is what I love most about him.  I feel that God put him in my life to create balance for me.  And to give me the two most beautiful girls a mom could have.

Anger

Angry tears came mid-week the first week of Emily’s life.  Angry tears were the fierce, pillow-punching, gagging tears that made the veins on my face bulge so much I looked like I was wearing a Halloween mask.  My anger was directed at God.  How could He do this to Emily; to us?  Why did He do this to Emily;  to us?  What did I do wrong to give this fate to my daughter, to my family?  Why?  Why?  Why, God, oh why?  These tears were furious.  Life was not fair.  Why?  I tried to pray the rosary looking for peace.  That only made me want to tear the rosary apart.  Why did Casey have to be given a sister like this?  Why couldn’t Emily be given the same chances in life as Casey?  Why?

Anger passed that week, but just as quick as it went away that week it came back as quickly the next and the next.  There was no big revelation that made me see that God had a plan for me, for us.  It just sort of happened over time.   Sometime I still am not sure of this plan He has and I will not pretend that I have faith all figured out.   I just came to know that God is going to throw you a ball and whatever that ball is, you better swing. 

Self-pity

 After a while I stopped focusing on being so mad at God.  Soon anger and self-pity became one mixed up emotion.  A lot more “why’s” and quite a lot of the sobbing that makes you gag, but not as much pillow punching.  I don’t think I can describe the emotion of self pity without hating myself for those dark thought.  But what I can describe is when it happened it stopped me in my tracks.  I became useless to my girls – a figure that sat in front of the mirror and just stared at myself.  When I saw another “normal” infant it hit the hardest.  Kind of like when I had my miscarriages and saw a pregnant woman.  Only this was that times 100,000 times harder to deal with.  Tom was (and still is) the only one who can talk this emotion and it’s tears away.  He knows.  He’s in it with me.  He told me that God gave us such a beautiful little baby and we needed to focus on what was right with her; all the perfect things.  He told me that Casey needed me to show her that life was going to be okay for her, too.  I was their mother.  That was a fact and I needed to do my job.  That was usually enough to get me through to the next time. 

Soon, Emily’s first week of life was over and we were into the second week. ( You thought I was kidding about baby steps??)  It was one day at a time for me.  Wake up, breath, kiss my girls and take care of my girls, getting lots of support from Tom and my mom along the way.

The Bright Side

I don’t want to seem like I don’t have any fond memories of that first week.  Casey was embracing her new sister exactly as we had hoped: with awe and curiousness and unconditional love.  Like any new big sister, she wanted to help pick out her clothes, help feed her bottles and play with all the new toys that Emily received.  We bought Casey some princess dolls and gave them to her telling her that Emily got them for her new big sister.  I think that really helped Casey accept the new attention-getter that was now residing at our house.  She did “test” us that first week and I remember vividly the knock-down-drag-out fight over spaghetti that Casey and I had at dinner.  But it was all typical new big sibling stuff.  Casey was interested in her new sister but really just wanted to do her typical things like read books, play Play-Dough and watch cartoons.  Just the way I wanted it to be for Casey – normal.

Emily turned out to be a great sleeper.  When we brought her home from the hospital she started sleeping 4 to 5 hours at a time at night.  Of course after her diagnosis, that completely freaked us out because we wondered if she knew to wake up and eat.  So we would set our alarm for every 3 hours to wake her up and feed her.  We discussed this with the pediatrician and she was not concerned for malnourishment.  In fact, she encouraged us to take advantage of our little sleeper and get some sleep.  It turns out the doctor was right:  Emily was just a good sleeper and she started sleeping through the night when she was 2 weeks old and never looked back.  Mommy caught a break!  (Just to rub it in to all of you moms out there – Casey started sleeping through the night at 5 weeks of age - I was blessed with good sleepers. J )

Emily was born with white blond hair and big blue eyes.  I remember staring at those blue eyes and wondering what it was that she was seeing and taking in.  She had the longest fingers attached to graceful hands, really.  At one doctor appointment that week an elderly lady came up to me and told me my daughter was beautiful and had the hands of a piano player.  I was proud of her beautiful hands, but would Emily be able to learn to play?

Vitals

Dr. Saal had explained to us that children with Wolf Hirschhorn’s syndrome were likely to have major organ problems, feeding problems, low muscle tone, and a higher likeliness for seizures.  We held our breath when we took Emily to the cardiologist to have tests done.  Quite literally held our breaths.  The cardiologist did the test and told us he was going to leave the room to discuss the results with the other doctors.  I knew nothing of heart problems - just that they were bad and the only likely way to fix them was to crack open my little baby’s chest.  So we held our breath.  When he returned, he told us Emily’s heart looked good.  Real good.  There was a minor narrowing in her aorta, but it posed no health threat and he anticipated that would resolve itself in time.  In addition, she was breathing just fine and showed no signs of any lung problems!  Wow!  Emily just passed a huge test!  For the first time since Emily’s birth, I thanked God.  For the gift of a perfect heart.

She was also eating just fine and showed no signs of requiring additional feeding assistance much less a feeding tube.  She did have low muscle tone, but she was moving her arms and legs actively and was able to squirm about in her bed.  Maybe at this time, the end of the first week and the beginning of the second, is the time that I became a less angry at God.  After all, He had just given us so much GOOD information about Emily.  Her vitals were above the baseline for any kid Dr. Saal had seen with this syndrome.  I know for a fact that this time was when I first learned about perspective.  Emily’s condition could have been a lot worse.  I suddenly had much to be thankful for about Emily.

Diagnosis #2 (the right diagnosis)

On the Monday Emily was 13 days old, we were beginning to adjust to life without the help and live-in support of mom as she went home the day before.  I don’t remember what I was doing when the phone rang.  It was in the afternoon sometime.  Tom answered to discuss the results of our blood tests with Dr. Saal.  After he hung up he told me that neither he nor I had any evidence in our genes that Emily’s condition was hereditary.  I was instantly relieved for Casey’s future children and for my sister.   He then started to speak so flatly that I don’t think I even actually heard what he said.  I just heard the sound of his voice and started thinking, “Good God, what else?!”  Then I asked him to repeat what he just told me.  He said Dr. Saal told him Emily does not have Wolf Hirschhorn’s syndrome.  Further analysis of her genes did show a deletion to part of her 4^th chromosome, but it was not the part that they originally thought.  My head started spinning.  What does this mean?!  I did not think I could take anymore.  These past days had left me emotionally destroyed.  I was not prepared for what Tom said next.

He went on to explain that Emily’s outcome was now projected to be better.  Much better.  Dr. Saal said he anticipated Emily was going to be only “minorly to moderately mentally retarded.”  She should be able to one day take care of her daily self care.  She would go to school.  For our reference, her outcome might be similar to someone’s with Down Syndrome.  There was no name for her syndrome, though.  Only conditions that occur more frequently get named. 

Dr. Saal could only find one other person in the world with the exact same chromosome deletion as Emily.

             If I had started to just understand faith, thankfulness, and perspective in the days before, I suddenly was hit with it full on.  This was a miracle.  Had all the prayers worked?!?  I had a lot of family and friends tell me that God had answered all their prayers.  Really I know that genetics doctors just further examined her blood work like they said they would.  But I don’t think we ever even dreamed of another, better diagnosis.  I called all of our family members with the elation of winning the lottery.  It’s funny now I think if any parent would have gotten that news we did that day, would they have been HAPPY?  I can almost laugh at that thought now.  Of course not. This news would be devastating to any parent.  Any parent except the ones that had been through the hell we lived through the past week. 

There was a part of me that, although I was on cloud 9 of relief, I did not want to fully believe what Tom had told me.  I needed to hear it from Dr. Saal himself.  I wouldn’t let myself get this hopeful and then be crushed by another mis-diagnosis.  Tom told me to call the doctor and hear for myself.  I was still very emotional and did not think I could get through a phone call without crying, so I e-mailed him.  I asked him to re-explain Emily’s new diagnosis.  And I had 4 questions that I needed answers to:     Would Emily one day be able to walk, talk, learn and play?    He replied: probably.   That was enough.  God had given us a miracle.

I'll stop here. I told you it was going to be long!  I'll post a blog entry on Ages and Stages-Catching Up with Emily and it will start from here.  This time was our 'New Beginning'; when she was only a week or so old.  I read some of this again and I now feel selfish for many of my feelings - so many other families have to endure far worse than what we did and do.  Families do have children with Wolf Hirshornn's syndrome and other more severe diagnosis'.  So I hope my recount of those weeks are not insensitive and cruel to those families- I am only documenting what I felt at that time in my life. There are many families in the world that have been blessed with a child with special needs.  Each of their stories is undoubtably unique.  Ours is special because it is US.