the harried househusband

My wife cried three times yesterday.  The first occurred after she returned home from a mothers day tea at Emmaline’s school.  We have cried many times since Emmaline’s diagnosis, but there is always something new that hits us about what we will never be able to experience with her.  Emmaline was happy to see Kristin of course – and she enjoyed her cupcake – but there were no words – no “mom,”  no “hi,” no “sit by me.”  It was perhaps one more reminder of what one Mom will never be able to share with her daughter.

The second event occurred when our son John called from jail – where he has been for about a year now. We had received a letter from him earlier in the day.  He had sounded despondent. Depressed.  We were worried that he might try suicide again.  The tears welled up in Kristin’s eyes as she talked with John on the phone – though to her credit, those tears never extended to her voice.

The third time, was in the late evening as Kristin was trying to give herself a shot of lovenox (not as romantic as it sounds, it’s a blood thinner).  Twice a day, she has been giving herself a shot – with a needle that is most definitely thicker than a diabetes needle, that stings as it goes in, and leaves a nice sized bruise when done.  Sometimes, the needle just won’t go in.  Leaving even more bruises.  sixty shots down and about 250 more to go, can be quite daunting.

Three years ago, we decided to try to have one more child.  There was an early miscarriage followed by another one where we knew fairy early that it wasn’t viable – but where Kristin still had to wait until about three months before nature took it’s course. There were months and months more of waiting until a year and a half ago, when we decided to see an infertility specialist.  We were getting older – and with each miscarriage and lost month, the clock was ticking.  We decided to do IFV.  Suddenly though, as we were doing the pre-testing for IVF, we found Kristin was pregnant.  An answer to prayer we thought – and it would certainly save us thousands of dollars in medical costs.  It was a boy – and the second trimester screening showed that nothing detectable was wrong with him.  We were excited and elated to soon have another child in our home.

One day I was at Costco, in the cereal aisle, when an impression came into my mind to check my phone.  The ringer switch on my darn iPhone often gets turned off by accident when I slip it into my pocket.  I looked, and saw that Kristin had called a couple of times.  I called her back.  She’d had a doctors appointment that morning with the ob-gyn.  In tears she told me that there had been no heartbeat – she was on her way back from another doctors office where she had gone for confirmation of that.  I got off the phone.  Stunned.  I punched a cereal box, several flew off the shelf.  A woman looked at me in horror and scurried out of the aisle.  Annabeth, in the shopping cart, looked upset.  I tried to calm myself.  Walked to the checkout aisle – knew that my family needed food.  I looked down at my hands and saw they were shaking.  I couldn’t get them to stop.

At the hospital a couple of days later, Kristin asked the doctor if they couldn’t do one more ultrasound just to make sure they hadn’t been wrong.  My heart broke for her.  The doctor assured her that there hadn’t been a mistake – as did I.  For weeks after, I felt guilt that we hadn’t double checked.  What if God had performed a miracle and the baby had come back to life but we hadn’t bothered to check?  Such is how it goes with grief.  Not always logical.

The following weeks were difficult and upsetting.  It’s rather hard to get over the loss of a child.  We found ourselves back in the waiting room of the IVF doctor.  Thus began a round of many shots and almost daily blood tests for Kristin.

Our first round of IVF yielded 7 eggs that then yielded what looked like 5 healthy embryos.  We had decided to have all of the embryos tested using PGD (preimplantation genetic diagnosis), since that would reduce the risk of miscarriage dramatically. Our insurance paid 70% of the cost of IFV – with a maximum of three cycles.  After having watched Kristin go through one cycle, I had felt that we just couldn’t put her through any more cycles – so I was very hopeful when we had such a good number of embryos – for our age.  When the results came back that they all had multiple genetic abnormalities, we were terribly disappointed.  Kristin decided to do another cycle – she just felt she couldn’t give up until we had done all we could.  After the second cycle failed to yield any healthy embryos, we began the third and final cycle.  That last cycle yielded 8 healthy looking embryos.  Testing this time, revealed that just one (one!) embryo was in actual fact, healthy.  Our doctor wanting to leave nothing to chance, scheduled a hysteroscopy to make sure everything would be ok.  By that time, Kristin was getting to be quite old had at anesthesia – her sixth time in a year – but it still made me nervous.

The implantation was scheduled for the first part of January.  Then, just days before the procedure, Kristin fell while getting off the ice skating rink at a church youth activity. She tore the mcl and acl in her knee.  It seemed as if we just couldn’t catch a break.  We felt that we should still move forward with the scheduled IVF implantation even though we didn’t know at that point if Kristin would need surgery for her knee – and thus began days and weeks of waiting.  We were elated when we could hear a heartbeat at 6 weeks.  But convinced that there wouldn’t be a heartbeat at the next scan a week later.  Elated when there was.  But sick to our stomaches through the whole next week till the next scan. It was hard to let ourselves have hope that this time it would work.

A week ago, we were at a performance at Taylor’s school, when Kristin started to get contractions.  We hurriedly left with Taylor still up on stage, not knowing we had gone, and raced to the ER.  The contractions were strong.  Kristin couldn’t speak.  I thought we were going to lose yet another baby – this time right in the car.  I told God that this was it.  We really couldn’t handle any more losses right now.  That it really would be pushing us over the edge, not up to, of our capabilities.

New York hospitals are great. The ER, after several minutes of consultation, while contractions were ongoing and without actually checking Kristin, decided to send us up to labor and delivery.  At labor and delivery, they clearly want to make sure you can pay, before they do anything.  They had Kristin sit in a chair in the billings office while they collected insurance information, then had her sit in a hall for several minutes before someone eventually had her sit on a ‘bed’ in their triage room.  There she sat for another 15 minutes, while a nurse filled out more paperwork before anyone even so much as took her blood pressure. “Biling First,” should be there motto.  It certainly isn’t “patient first.”

We were there for about 4 hours.  During which, they did finally ascertain that Kristin had an infection that was causing the contractions and that the baby was fine.  Kristin is now almost 20 weeks pregnant, and we think we are now ready to start telling people.  Mostly, because she can’t hide it anymore.  But we are hesitant.  We are still scared of a loss.

Which brings us back to the lovenox shots. It’s one of those things were you think to yourself, “Seriously? Hasn’t there been enough crap already?” A month ago, as Kristins injured leg began to suddenly swell, on the advice of her doctor brother, we headed to an ER. Blood clot found, she was stuck on blood thinners for the rest of the pregnancy – and I am counting down the days with her.

So why tell this tale on mothers day?  Because, as I watch my wonderful, lovely, courageous and beautiful wife struggle through what has been a terrifically challenging season of our lives, I can’t but help love her even more.  I know what she is going through.  I too, tear up on a still daily basis, when I am confronted with the magnitude of what Emmaline’s diagnosis means in the life of our very loved daughter.  I too spend my days, trying not to even think about John in jail – compartmentalizing it in my brain in a room with very high walls.  And I have watched as it were, from a distance, the incredible sacrifice that she has made to have the child that she now carries within her.

We haven’t smiled much these last few months.  Perhaps a little bit of ptsd.  We haven’t even dared to come up with a name for our expected little boy.

However, I look at my wife, the soon to be full professor of biology, and I am so very proud.  You kept dating me Kristin – even after John stole $300 from you the first time we all had dinner together at your apartment.  You held my hand through the visits to psychiatric hospitals, jails and residential schools.  You understood what a loss it was when my father departed this life – having lost your mother years earlier.  You have held me in your arms when you found me sobbing on the couch after the loss of our child.  You have shared my sorrows and I yours.  As I pen this, it sounds awfully one-sided – and reminds me that I’d better hold you in my arms a little more, because, I’m awfully lucky and blessed to have you.  So have a wonderful mothers day.  Your daughter may not be able to say it with words, but she tells you all the time with her eyes, how very much she loves you.  And I love you too.

(While I’m at it, I’d better say happy mothers day to my own mom as well!  I didn’t marry my mom – as some are wont to do – but you are as wonderful, courageous, faithful and strong as my wife is.  You have been an inspiration to me all my life – and I am grateful for your enduring example!)

I’m starting to think that I should change the name of my blog from the harried househusband to the completely frazzled and unable to get anything done househusband. A couple of weeks ago, on the day when I had planned to write the second installment on the ‘Carlos Series’, we found that our computer (a mac) had crashed.  Eventually, we took it into the “Genius” bar at the mac store, where we told that it just happens sometimes and that no one knows why.  Really?  Genius much?  Software reinstalled (and all papers, pictures, etc., wiped from our computer), we left – and I thought, now I can get this done! However, a trip to the ER with my lovely wife, derailed those plans for a few more days.

Back in December, Kristin had taken a youth group from our church ice skating.  Just as they had finished and she was stepping off the ice, her legs suddenly split apart, bambi-like, and she was left with a torn MCL and ALC in her left knee.  For weeks, she had to keep her knee immobilized in a straight leg brace.  She has been going to PT for the last month or so and had finally been freed of the brace.  However, a week ago, her calf and ankle had begun to swell.  The PT said that could just happen sometimes.  However, when the swelling wouldn’t go down – no matter what actions Kristin took, we became a little concerned.  After a phone call to her doctor brother (thanks Mike!), we were instructed in no uncertain terms to head straight to an ER.  A couple hours later, the ER doctor informed us that Kristin did indeed have a blood clot in her leg and would have to be admitted  – she refused to say for how many days.  A nurse came in, put a line into her arm in preparation for admitting her.  Thankfully, Kristins doctor overruled the ER and said to send her home with lovenox shots.  The ER doctor, who had a little bit of attitude, seemed quite miffed at this.  The lovenox shots by the way, are horrible.  Twice a day, Kristin injects herself.  Each one leaving a plum sized, purple bruise.  Our 4 year old saw them the other day – she was quite concerned and upset.  So am I.  I feel like crying every time I see them. It really does look terrible (no offense, sweety) – I guess once Kristin’s stomach is all purple, with no clear spots left for shots, she can then happily move on to other parts of her body.  All of which, brings us finally to:  CARLOS, PART DOS

I last wrote about my decision to adopt Carlos – and     It had been in the Spring when I first met Carlos.  My decision to go forward with adopting him was finally put ‘pen to paper’ in August of that year.  Government run child protective services are not know for being efficient or well-run, and this was certainly the case with the Department of Children’s and Family Services (DCFS) in Los Angeles.  It took a couple more months of waiting and paperwork before I started weekly visits with him.  In December, he was able to stay overnight at my home once a week.  Carlos was at that time, living with the same set of foster parents who’d had him since he was released from Children’s Hospital.  He called them mom and dad.  They had him call me Papa Dave.  He slept in a small room with another foster child.  They had mattresses on the floor, but no beds.  There were also few toys, with t.v. being the main method of child entertainment  His foster mom told me that they kept a lock on the closet, with their clothes inside, because they were always trying to play with the clothes.  I wondered what else she expected.  With hardly no toys at all, they’d be desperate to play with just about anything.  Despite this, the foster parents were not terrible by any means – I have seen far worse.  It was clear they cared for Carlos – though clearly not as much as for their older biological children who had plenty of ‘toys’ – he was not abused or mistreated – just not really nurtured either.  They had decided to start a large group facility for adults and so had decided they didn’t want to have foster children anymore.

I had hoped to have Carlos placed permanently with me before Christmas of that year, but his foster parents wanted to spend one last Christmas with him.  I had to settle instead for giving him a Lincoln Log set a couple of days early.  On January 6th, when he was finally placed with me, those Lincoln Logs had oddly gone missing.

First time parents can often have a bit of a shock when it comes to getting used to a newborn.  The sleepless nights, diapers, etc.,  When an older child is place with you, there is also quite an adjustment period.  The child comes with ingrained habits, likes, dislikes; is used to certain types of discipline, or lack thereof; has foods he will or won’t eat.  I found that there was quite a bit to learn about this now 6 year old who had entered my life.  I found for example, that he had never been taught how to use a fork.  Or a plate.  His food, usually rice and meat, had been given to him in a bowl, with a spoon.  Vegetables, any kind of vegetable – even fake vegetables such as corn, and fruit, were not happening.  At first, when given vegetables, Carlos would simply refuse to eat them.  When told he had to, he would make this horrible retching, gagging sound, the minute they were in his mouth.  After making himself throw them up a few times at the dinner table, I explained that overtime he did this I would double the amount of vegetables on his plate.  Eventually, I resorted to putting only vegetables on the plate, which he had to eat before anything else would be put on the plate.  Carlos started to grudgingly eat his vegetables – though always with a very unpleasant look on his face – which took another 12 years to undo.  Mostly.  Even now, he stills looks like he is going to hurl when eating peas.   Of particular enjoyment, was that whenever I had a visitor, Carlos figured that was when he could get away with retching at the table again.  It led to more than one startled look.  That’s the joy of children though isn’t it?  They are constantly trying to outsmart us, there parents, and we are constantly having to up our game to stay ahead of the little rascals.

Other things I learned about Carlos:  He has quite the phobia of birds.  I learned this a couple of weeks after his placement.  We went to an open air market in downtown Los Angeles, to look for a new backpack for him.  As we were walking along, a couple of pigeons landed about 20 feet in front of us.  Without warning, Carlos let out a scream, turned tail and ran.  Fast.  I had no idea Carlos could run that fast.  His left leg was in a brace.  He fell easily.  All the time in fact.  He had little cuts, scrapes and bruises all over both of his hands and arms from falling so much. I almost always held his hand when we went places so that I could catch him when he would fall, before he got more cuts and scrapes.  So there he was, zooming away from me at full speed, blindly running to who knows where.  “Huh,” I thought, as I turned and ran after him.  “No one mentioned this.”

Bathrooms were another problem.  Mainly, bathroom habits.  “You have to hold it,” I would tell him, after seeing puddles and splatters everywhere.  “You have to hold it.”  “And aim.”  I finally gave up – and Carlos was relegated to sitting.  Which even then, did not always work.  “You have to push it down, Carlos, down! You can’t just let it shoot straight ahead!”

There were also the sadder moments too.  I had Carlos start attending kindergarten at the school where I taught – where kindergarten was a half day.  After kindergarten was over, he went to a nearby after school program, where he would wait until I was done with work.  About a month after placement, I went to pick him up one afternoon.  Carlos’s face screwed up when he saw me and when we got outside, he started to blindly run few yards down the sidewalk.  It was clear he was trying to hide, but there was no where to go.  It was a barren sidewalk in East LA with a chain link fence next to it.  He stopped, faced the fence and stood there crying, trying not to let me see.  I got him into the car.  He kept asking “why?”  He wanted to know why he wasn’t with his “mom” and “dad” anymore.  He meant his foster parents.  The only people he could ever remember as being his Mom and Dad.  What do you say to that?  I’m certainly glad that in the intervening years, those memories have faded for him and that the life which he has had with me and then with his new mom Kristin, has been one that no longer leaves him asking “why?”.  It also helps that there are no more awkward moments, such as the time I was in line at the going out of business sale for Montgomery Ward.  “Can I go home with you?” he asked the nice looking couple ahead of us.  He clearly thought they looked like better parents than I did.

It’s amazing to me how long it can take to adopt a child – and that it often takes quite a bit more time than having one the biological way.  By the time Carlos had finally been placed with me, I had already made the decision to move from Los Angeles to NYC.  Not an easy decision to make – but I had felt for some time a strong impression (which I had desperately tried to ignore) that NYC was where God wanted me to go. I loved living in LA though – and still don’t love living in NYC.  In fact, the longer I lived in LA, the more I liked it. The opposite seems true for me with NY.  I had been told by my social worker that after Carlos was placed in my home, that it shouldn’t take more than about six more months to finalize.  She was way off.  Figuring that his adoption should be finalized sometime in the Summer, I started making arrangements to move to NYC in the fall.  I flew out there a couple of times, found a house to buy and was ready to go.  DCFS, of course, was not ready.  The judge handling Carlos’s case went on vacation so when the hearing came to terminate Carlos’s birth parents parental rights, a judge that was completely unfamiliar with his case, refused to do so.  We had to wait for the other judge to come back and reschedule.  When it became clear that things were going to move much more slowly, I was given permission to move to NY with the stipulation that I would check in with a NYC social worker once a month.  We moved into our house about 1 month after 9/11.  Not a great time to move – and it was sobering to witness the aftermath of that tragic day.

Time does move on however, though apparently not for DCFS or New York’s Administration of Children’s Services (ACS).  The monthly visits stretched on and eventually, ACS decided since we now lived in NYC, that they were going to take over and started to demand that a new home study would have to be done – including having to now get approval from them to adopt.  My lawyer, a rather high powered, pro bono lawyer from a prestigious law firm, was almost as livid as I was.  After a few well placed phone calls to higher ups in California, things finally started to roll quickly.  I was still worried about ACS, but our lawyer informed me that we would do an end run around them – we would schedule a date in a LA court, not tell NYC, and once it was finalized by a judge, there was nothing they could legally do – even if they didn’t like it.  So, in July of 2002, we flew out to LA and happily went to adoption court.

Carlos was quite nervous when our court day came.  He had watched quite a bit of judge Judy, apparently, at his foster family’s house.  He was terrified that out judge would be just like her.

My Mom, my brother Michael and a very good friend, Jan, came to observe the day and to celebrate with us.  The ceremony, as all good ceremonies are, was short, but moving.  Mostly, I was just relieved that I no longer had to worry about some ill-informed person thinking it might be best to remove Carlos from my home.  While there are a lot of good social workers out there, there are also quite a few rather incompetent ones.

When I returned to NYC, the social worker that we had to see each month from ACS, called to schedule a time to see Carlos. I declined, told him though, that I’d be happy to drop off a copy of the adoption decree. He really was a little miffed for some reason – but what a relief.  I now had sole authority for my son.

That authority hasn’t always been easy.  It involved suing the NY Board of ED when Carlos was held back in 3rd grade and threatened with being held back again – with no changes with how they were working with him mind you.  A private school for children with learning disabilities was found.  Carlos did well there.  Every year, the board of ed fought me on it – so every year, I hired a lawyer to compel them to provide the federal mandate of a “fair and appropriate” education.  There were surgeries to contend with as well.  Heel cord lengthening, to keep him from walking on his toes.  A muscle transfer to his knee and foot to see if they might take and help him walk better (they didn’t).  And when he was ten, hip surgery.  Due to the paralysis, his hip joint had not developed correctly and the femoral head of his femur, had slipped out of the socket.  His surgeon carved out a better socket in his hip, and then broke his femur in a couple of places so that they could straighten and re-align his leg.  The surgery lasted several hours.  The Surgeon told me to go watch a movie.  I did, though for the life of me, I still can’t remember what it was.  It took 3 months of hospital recuperation before Carlos was able to return home.  One benefit of this however, was that his hospital overlooked the East River.  On the 4th of July, they wheeled him, accompanied by me and his Grandpa, up to the roof where we had an incredible – and un-crowded – view of the Macy’s Fireworks display.

There have been other changes to life since I adopted Carlos.  There was the adoption of an older brother.  John.  I’ll write about him someday when I am feeling particularly brave.  There was a new mom, stepsister, younger siblings born, middle school, soccer, vacations, EFY (an LDS church camp for youth), high school, six years of Spanish (Carlos, being 1/4 Navajo and 3/4 hispanic, has always fancied himself being able to speak Spanish – he can’t he’s terrible at it – even after six years of it in school – I think he can count in Spanish though…), school musicals (all terrible – and yet I miss them), student government (he did a rap video for his ‘vote for me’ speech), and of course, the list goes on.  When I think of Carlos, I am so grateful to have been able to adopt him.  He has enriched my life, and I, him.  I love to think of all the things that this wonderful young man has been able to experience in his life – that surely he wouldn’t have, if the Lord hadn’t done some arranging.

When it came time for mission, we found quite a bit of pushback from some areas and from some well meaning individuals.  Our church has made great strides with offering opportunity to those who have disabilities, but it became clear to us that much work remains to be done.  In the end, Carlos was given the opportunity to serve a “two transfer” mission – essentially a ‘trial’ mission, but they don’t like you to call it that.  His wonderful mission president and wife, President and Sister Morgan of the NY North Mission, loved Carlos and recommended that he be given the opportunity to serve for a full two years. One story that they shared with us that I particularly liked, was that President Morgan had seven different missionaries come up to him and ask if they could be Carlos’s next companion.  I am often inspired by the youth of the Church and their goodness.  Carlos has a significant stutter, is not always the neatest person, and can require a little patience sometimes.  Since missionaries are with their ‘companion’ 24 hours a day, seven days a week, I could see a lot of young men thinking, “Oh please, not him.”  The opposite though, has been true. These young people see in Carlos what so many adults have failed to see.  They truly are learning to emulate Christ in their lives, and I rest easy knowing that “Elder Glick” is in good hands.

We miss him.  We have another year and a half to go before we see him again.  We’ll get to talk to him on Mothers day (not fathers day however, which I feel is an antiquated injustice), otherwise we are stuck with his not very informative emails.  He writes a couple of paragraphs, while his cousin who is serving her mission in the Philippines writes a book chapter each week.  But at least I know that Carlos is doing “awesome,” since that appears several times in each letter home…

I invite you to share this blog with your friends and to even sign up to follow my blog if you feel so inspired. Also, please feel free to leave a comment!  I’m also sharing the link to a blog of a great young man who served many months of his mission in our congregation.  We love him and are praying for him as he faces a diagnosis of cancer: http://seancancervive.blogspot.com/

When I started this blog, my goal was to write a weekly post.  Failed already on that count.  Mindful that I had missed writing a post last week, I was just getting ready to start writing yesterday, when Emm’s school called to say that she’d had a seizure.  My writing plans were thus dumped for the more expedient need to pick her up from school.  Kristin and I still have our days – and I think will continue to for a good while.  Coming to terms with Emmaline’s diagnosis is not an easy task.  Bearing that in mind however, I have decided to write on a totally different topic.  Because…why not?  (And also, because writing about my son Carlos, makes me smile.)

Many years ago – when I was thirty years old, I lived in Los Angeles.  A much lovelier place than New York, I might add.  Good weather.  Palm trees.  Clean beaches. My house in the hills was quiet and secluded – unlike my house in the hills in NYC where, I am constantly subjected to sirens, honking and assorted bad tastes in music.  I was working as both an actor – mainly doing commercials, assorted theatre and occasionally a small tv or film role – and as a half day kindergarten teacher.  I enjoyed my life immensely, but also yearned for many of life’s situation’s that Mormon’s often wish for:  marriage, children, family.  I had a great cat that had singled me out when she had wandered into the kindergarten yard – looking for someone to feed and take care of her.  As much as I love cats however, it just wasn’t the same as being married or having children.  (Though far simpler as I have learned.)

One day, one of my co-teachers who was around my age, mentioned that she had decided to become a foster parent.  The thought stuck in my head and I just couldn’t get rid of it.  I wanted more purpose than going to my singles congregation, shopping and working – so I decided to pursue the foster parent route as well.  However, as I began certification classes – it became quickly clear to myself that I really wasn’t cut out to be a foster parent.  I’d had several kids in my classes through the years who had been in foster care.  I was certainly aware of the need for better foster parents as most of their’s had been rather abysmal.  But even if their foster parent was decent, these children invariably eventually went back to their biological parents – and to a situation that had often barely improved – if at all.  I realized that I just couldn’t bear to see that.  I had always wanted to adopt however, so I decided why not?  I had a house, job, plenty of money.  And though I hadn’t yet managed to find someone who would agree to marry me (that I also wanted to marry) – I was tired of feeling as if life didn’t begin until marriage.  Certainly, a pressure that I think people can feel in not only my church, but many.

Of course, news of my decision did not sit well with quite a few people.  Friends, family, acquaintances, all seemed to have rather strong opinions about what I should be doing with my life.  I certainly knew they cared about me and tried to appreciate that was where their comments were coming from, but there were times where I wished the comments just did not come.  I think some thought I was jumping into the decision to adopt rashly.  Such was not the case however.  I had spent many hours on my knees praying about it – and had come to the firm conclusion that for me, this was the right decision – and that God was pleased with my decision.

I had decided to adopt out of the foster care system.  I also had certain criteria in mind – I would not adopt an infant or toddler for example, because there were usually enough married couples that wanted to adopt these children – and I firmly believed that when possible, a child is always better off with both a loving mother and father.  However, since many children in foster care are never adopted at all – I also certainly felt (and still do), that a child is better off with A parent than no parents.  Thus my search began.

It’s a strange thing ‘picking’ a child.  It can even feel a little awful at times – putting children almost in the roles of commodities to be perused and compared.  I realized that on my own, I was not up to the task.  So, I turned to prayer once again.  Los Angeles county, where I lived, was having an ‘Adoption Fair’.  An event where children who were available for adoption would be at a park, set up with rides, food, crafts and sports.  Parents who had been cleared for adoption were invited to attend.  We would be given a paper that we could write the names of our first several choices on – in order of preference – that would then be given to our adoption worker at the end of the fair.

I thought, how in the world do you ‘pick’ a child.  It seemed far simpler to get married, have a child and let God ‘pick’ the child for you.  But that’s what I decided to do.  Not the marriage part, but the let God pick part.  I prayed before the ‘fair,’ that God would bless a child that he wanted me to adopt to be there.  And that I would make a connection with this child – and no one else.  That it would be clear to me.

The day of the fair came.  It was rather sad, honestly,  Seeing all of these children without parents to love and take care of them.  There were siblings.  Younger children.  Older children.  An awful lot of children.  Shortly after the fair began, a child caught my eye, but I quickly noticed that he seemed quite disabled.  I didn’t want a disabled child.  It was more than I wanted to take on – plus I wanted to be able to throw a ball with him and other stuff that Dad’s dream of doing with their kids.  So, I moved on.  I sat at the crafts table next to a couple of kids.  Cute kids.  Being a kindergarten teacher, I figured I’d have an easy time getting to know some of them.  I turned to the boy next to me and began to help him with his craft.  He pulled it from me and almost immediately turned to some adults on the other side and started working with them instead.  I started to play ball with another boy.  He was seemed smart and lively.  Felt no real connection, but put his name on my list.  I had been there for a couple of hours and my list had been empty.  I had to put someone on their surely.  I noticed a cute kid on the train ride.  Then realized it was the same disabled kid I had noticed earlier.  I went on.  A couple more hours passed and the event was winding down.  Still no ‘connection’ with anyone.  I was feeling rather discouraged.  People were starting to go home.  Some of the kids and their workers were leaving.  I saw the disabled boy from earlier sitting down a hill with his adoption worker.  All alone.  Clearly no one was interested.  I walked down the hill and sat down next to him.  He was eating ice cream and doritos at the same time.  Quite a mess.  He offered me an ice cream and, I think, partly saliva covered dorito in his hand.  I’m not really a fan of sharing saliva – my wife will tell you that I’m not even keen on sharing a straw.  I took his proffered dorito however, and popped it into my mouth.  He gave a large smile and I knew.  This was the person that Heavenly Father wanted me to adopt.

Later, my own adoption worker gave me the rundown on this boy, whose name was Carlos.  He had been in a car accident just before turning two.  His biological mother had been drunk and gone over the side of a cliff.  She climbed out of the wreckage, carried him up to the road and walked until she found a fire station.  He was immediately take to a small hospital in the area, then transferred to a larger one and then flown by helicopter to Children’s Hospital in Los Angeles.  He had a traumatic brain injury that had left him with cerebral palsy, a brain shunt, blind left eye and left side paralysis.  When the extent of his injuries became apparent, his bio mom, left and never came back.  After Carlos had spent a couple of years in foster care, his bio dad – who’d been having weekly visits with Carlos – and bio dad’s girlfriend, took Carlos in.  After a couple of weeks they decided that it was too much for them and they dropped him off at a homeless shelter.

The extent of Carlos’s disabilities was rather overwhelming to me and I felt a little take aback as to whether I could handle it all. My social worker informed me that as well, Carlos’s parental rights had not yet been severed – which could take some time.  However, she informed that the other boy’s name that I had put on my list was immediately available.  I decided to adopt him instead.  I didn’t sleep well the next few days.  I felt that I had made the wrong decision – and yet I couldn’t bring myself to change it.  Adopting a child with the extent of Carlos’s disabilities was simply too much.  One day while I was praying about it, some very strong images and feelings came to my mind.  If I went through with my plans to adopt the other boy, all I saw was darkness and conflict.  Conversely, I saw Carlos as a young man, well-liked, confident, and preparing to leave to serve as a missionary for our church.  Despite this ‘vision’ if you will, for lack of a better word, I still couldn’t bring myself to make the phone call to adopt  Carlos instead.  I did pray however.  I expressed to my Heavenly Father that it was too difficult and overwhelming for me and  asked that if I truly should not adopt the other kid, that he would bless it not to happen and that I would instead adopt Carlos.  A few days later, my adoption worker called to say that this boy was no longer available – that a mess up had happened in the paperwork and that his adoption worker had promised him to someone else.

A couple of weeks after that, I received a phone call from another adoption worker offering me an infant for immediate placement.  I declined.  I knew who it was that God wanted me to adopt and had determined to do so.

Next week, I will write a second installment about Carlos and his adoption.  I invite you to share this blog with your friends and to even sign up to follow my blog if you feel so inspired.  Also, please feel free to leave a comment!

The thing that I always find hard to wrap my head around whenever there is a tragedy, loss, traumatic event., etc., is that life goes on.  While we mourn, the world swirls on around us unaware and unstopping in it’s trajectory.  And so it has been with us – even as I type this, my daughter Annabeth is sitting nearby watching a Little Einsteins video.  “Don’t cry Daddy” she says, as if to forestall what she now connects to my computer usage.  “Mommy loves you, so don’t cry”.

Last week both of our two little girls had their birthdays.  Emmaline and Annabeth are “Irish twins,” meaning that they are under a year apart.  On Annabeth’s birthday, she asked me how old she was.  “Four years old!”  “How old is Emmaline?” she asked.   “Four,”  I told her.  Her eyebrows wrinkled in consternation as she thought about this.  Then I explained that in just a few days her sister would turn five.  For some reason, that seemed to make it better.  So, even though we were having a rather difficult time processing the recent diagnosis of our daughter Emmaline with Rett Syndrome, there were still birthdays to celebrate, work schedules to be arranged, letters to be written to our missionary son and the ferrying around of Taylor to her various school and extracurricular activities.  All of this however, left me feeling like I was riding an erratic roller coaster, with my emotions going up and down with very little warning.  One moment I would feel almost ok, and the next would find myself shouting words I haven’t said in years.  I feel like I have a very tenuous grip on my emotions.  Yet another snowstorm did not help.  Do not ever buy a corner property, my friends, if you live in a snow state.  Twice the amount of walks to shovel.

We celebrated Annabeth’s birthday with a homemade chocolate cake (“I loooovvve chocolate cake!!” she exclaims.)  Annabeth despises dolls, but loves cars, trucks and trains, so we made her a cake based on the movie “Cars,” and decorated it with a couple of cars that she had not yet managed to convince us to acquire.

For months now, we have been trying to convince Annabeth that it was well past time that she started using the ‘potty’.  She has been more than resistant to the idea.  Having an older sibling who is still in diapers does not help the cause.  After a couple of failed ( and very messy) attempts, we had instead resorted to telling her that when she turned four, that would be it.  No more diapers.  Probably not the best week to undertake such an attempt, in hindsight.  But with what felt like the world crashing in on us, I just wanted to feel we could do something right.  And so as she turned 4, the diapers came off.  The first few days were rough.  Annabeth does not have a weak will.  After several puddles on the floor, we were getting a little exasperated.  One day, after she had run in to the bathroom and shut the door, I followed to see what was ‘going on’.  I found her  kneeling down by a brown ‘deposit’ on the floor trying to shove it into the toilet plunger.  Some of my friends may see the connection here:  Annabeth has an affinity for toilet plungers and is constantly trying to sneak them out of the bathroom to play with them.  For example, there was the “incident” where I found her holed up in the downstairs shower watching the iPad with plunger in hand – using it as a bowl to hold her food.  Thankfully, as of this writing, I can say that Annabeth seems to finally be on board.  In fact, while at the customer service counter at the store the other day, she started exclaiming, “the poo is coming, the poo is coming!”  “Do I have underwear on?!”  We had deprived her of underwear in our efforts to make it as ‘uncomfortable’ as possible if she chose to not use the toilet.

Emmaline’s birthday reminded me of just how difficult her challenges can be.  There are not a lot of toys that Emm, is interested in.  She does however, tend to like music quite a bit, and we have managed to find some toys such as the Leapfrog Scout, that she really likes.  I baked her a rainbow cake and we sang her happy birthday, which she laughed in delight at.  But as we started to help her open her presents, they scared her and it all became too overwhelming for her.  She started to cry and scream – and that was the end of that.  She’s had about a week now to let the new toys acclimate.  We set them around the house – and she eventually will start to cautiously approach them – and is starting now to play with them without getting frightened.  (I’ve posted some pictures of the rainbow cake – it’s rather easy to make.  Just mix your cake mix, divide it into 6 equal parts.  Brightly color those parts, and then pour one color into the center of the pan, followed by the next color into the center as well  – and so forth.  Then bake it, decorate it, and you’re done.)

Perhaps my greatest challenge in all of this – is placing my trust in God and figuring out how to let go of my fear. A couple of nights ago, I was sitting in bed next to Kristin reading Sophie Kinsella’s “Shopaholic to the Stars”.  (I can see why these books are popular – totally mindless – which is what I have resorted to.)  Suddenly, we heard a moaning scream coming from the girls room.  At first it sounded like another one of Annabeth’s nightmares.  I rushed in to to calm her down, to find that instead it was Emmaline having a seizure.  She has been having seizures for a little over a year now, but this one was different.  She has never screamed through one before.  She was clearly in pain – aware – and scared.  I desperately tried to hold her and help her stop – even though I know that’s not how these things work.  When it stopped, I was so upset that I wanted to scream at God, “What the hell are you doing to my daughter!?”  Instead, all I could really do was slump down next to her bed and cry.  Ever since getting her diagnosis, I have been terrified that she might still be getting worse and that rather than being in a plateau phase which this disorder can often do for many years, that she might still be degenerating.  I have watched everything she does through a different lens – one of fear.  She presents on the milder spectrum of this disorder, since about half of all girls with Retts cannot walk at all – and many cannot even feed themselves.  It is not uncommon however, for these children to have acquired these skills and then to lose them during a degenerative phase.  That has been my fear with Emm – that she might still lose those skills that she has gained.  However, we did have a bit of ‘good’ news this week when we got the specifics of her genetic mutation.  Retts, is caused by a deletion in the MECP2 gene – with various types of deletions possible.  Emmaline’s specific deletion is rare among those with Rett Syndrome affecting about 4% of those who have the disorder.  Many children with her specific deletion have ‘milder’ symptoms.  It’s a little crazy to feel that one is “lucky” that it isn’t worse.  Honestly though, I almost feel as if it is God saying to me, “I know that this is incredibly difficult for you – and I know that your heart could not have handled more.  But this you can, as difficult as it is going to be.”  That being said, I don’t know as God “gave” this trial to us – as it simply happened as a result of living in a less than perfect world.  I am not privy to His ways – and therefore do not know when He gives us trials, when He allows trials to come, or when he modifies one that we are having or that is coming our way so that we can withstand it – and learn what we specifically need to learn.  As angry as I have been, I do still feel that He cares – and that somehow, in the end, it will be ok.  I now just have to figure out how to keep that perspective in the coming years when those difficult screaming moments come.

The phone meeting with the doctor at the Seaver Center for Autism at Mount Sinai Medical Center, had been arranged a week earlier.  The doctors assistant had call my wife, Kristin, and they had set up the time for the doctor to discuss some recent genetic testing on our daughter.  We had already heard from them a few months ago that her genome looked fine and that they hadn’t found any mutations that were the cause of her autism.  So, we had assumed the phone call was about a drug study that we were waiting to enroll our daughter Emmaline in.

At the appointed time, the phone rang.  After the formalities of saying hi, etc., the doctor asked if my wife was also on the line.  “No,” I casually told him, “she’s leaving for a PT appointment.  She tore her MCL and ACL ice skating.”  The doctor seemed a little taken aback, I wondered why.  It seemed like no big deal.  Apparently the assistant had asked that we both be on this phone call.  I wasn’t aware of that detail, however.  “Well, o,k,” he finally says.    And he dived in.  After the first results came back, they ran another more detailed study of Emmaline’s DNA.  They had found a deletion on one of her X chromosomes.  “She has Rett Sydnrome,” he told me.  “I’m sorry, I know how upsetting this must be to hear.”  Upsetting?  Why?  I don’t even know what Rett Syndrome is, I’m thinking.  How bad can it be?  She seems mostly fine.  I mean, yes, she’s almost five and can’t talk, has some motor difficulty, hasn’t made the progress everyone always say she’ll make yet.  But we’ve got her in a great school for children with autism.  She gets therapy at home six days a week as well.  We are doing everything we can to help her.  Surely she’ll start making progress soon.

It’s a random mutation he tells me.  Very rare.  About one in 15,000 to 20,000 girls get it.  Males don’t have it because it is fatal for them. “What?”

I get off the phone and walk upstairs and sit on the bed with the computer and Google “Rett Sydnrome”.  I read the first site that comes up.  It lists four stages: Early onset, rapid destructive phase, plateau or pseudo-stationary stage and the motor deterioration phase.  I can’t take it all in.  Suddenly, I can’t breathe or reason.  All I can think is that my daughter is going to die. I start crying.  Sobbing.  My youngest daughter Annabeth, looks upset. I run from the room, so she won’t see me fall apart.  After a while I gather myself together, go back into the bedroom and continue reading.  I go to another website.  This one, http://www.Rettsydrome.org.  This website gives an approximate timeline for the progression of the disease.  O.k.  Not as bad as I first thought.  My daughter is not going to die from this immediately.  Possibly not even for decades.  She might even be past the destructive phase, so perhaps she won’t get worse for a few years.  maybe even a decade or two.  But she won’t get better either.  She’s not going to “come out of it” like some children with autism do.  She’s probably not ever going to talk.  I will never hear her say “Daddy”.  After years of hoping that she would eventually get “better,” I now have no hope.  She won’t.

Kristin came back from her PT and walked into the room to see tears still falling down my face.  I can’t talk.  So I instead turn the computer to her.  She takes it in with far more stoicism than I do.  Or perhaps denial.  Things hit me immediately.  Possibly my “artistic temperament” as my mom was always ‘fond’ of calling it when I was growing up.  Kristin, the scientist, usually has things percolate for a while.  But I always see the pain there – even if she’s not fully aware of it herself. Annabeth says she’s hungry.  She asks for mac and cheese.  It’s already lunchtime.  Kristin tells her we’ll go down and make her some.  “Not Dad,” Annabeth says.  “Daddy’s tears will get my mac and cheese all wet!”

I didn’t want to go to church this past Sunday.  I really wanted to stay home and not face people at all.  But I’m the bishop.  If people need assistance, I’m supposed to be there to help.  If they need counsel, I’m supposed to offer wisdom, kind words – and perhaps a bit of love.  I can’t possibly do any of this, I think.  We go.  It’s fast Sunday, but thankfully, I am not conducting.  We have many wonderful people in our ward (a term for a Mormon congregation).  And on fast Sunday, they each have the opportunity to walk up to the pulpit and to share thoughts and feelings about the gospel if they so choose.  One of these members whom I know quite well, get’s up.  He’s in the later years of life.  He’s had serious back problems for years.  He has diabetes.  Heart problems.  He’s losing his hearing, his eyesight.  He walks slowly, haltingly, with a cane.  He get’s to the pulpit, smiles like always.  “I smile” he says, “because I am so grateful.  I am grateful for life.”  He’s grateful for his wife, his children, his grandchildren.  He’s grateful that many years ago he found the gospel.  And he means it.  I know he does.  It’s not an act.

Recently, I sat in my bishops office counseling with a member of our ward.  One of our topics was tithing.  The biblical principal of donating ten percent of one’s increase or income. We talked of sacrifice.  Of Abraham being asked to sacrifice his son.  That sacrifice sanctifies us. It builds us.  Willing sacrifice brings us closer to God.  I mention that thankfully, God doesn’t ask us to sacrifice our children as he did Abraham.  I sit on the stand and think of this conversation.  And realize that often He does ask us to make the same sacrifice as Abraham.  I had spent the last couple of days being very angry at God.  (I still am.)  But I realized that forgiving Him and accepting what is – and having gratitude like this older church member  – is a sacrifice. It requires me to place all my trust in Him – as did Abraham.  I’m not quite there yet.  Not sure I will be for some time.  Not sure I will be when Emmaline’s motor deterioration phase comes.  But I will try, since honestly, what choice do I have anyway?

Emmaline will turn 5 on Thursday.  For those contemplating a gift, donations to RettSyndrome.org would be most appropriate.