Monday, December 31, 2012

December 31, 2012, 11:59 p.m.

A friend reminded me of this quote the other day. A quote from one of my favorite books (also a movie) that kept me "flowing" while I was in India.

"Everything will be all right in the end... if it's not all right, then it's not yet the end." 

For me, it's the perfect summation of 2012.

In fact, I struggled with writing an End of the Year post, in that after living through this extraordinary year, I don't know that I'll ever see an anything.

During the week that MC became very ill, another friend wrote to me and posed this question-- How in the world was I ever going to say goodbye?

It gave me pause, as it had never occurred to me that I would have to say goodbye.

I had said a lot of goodbyes the past year. I had said goodbye to my American family as I boarded that one way flight to India in March. I had said goodbye to my Indian family as I boarded the medevac jet to America in August. I had said goodbye to my 9th Floor family as I boarded the ambulance to hospice in November.

But by the time MC became very ill in December, I had learned, finally, that I no longer needed to say goodbye.

Because I had learned that there will be people and places that I encounter throughout my life that have such a profound impact on my being that I will carry them with me for eternity... regardless of their presence in my life.

I have encountered more of these people and places this past year than I have in my entire 30 years, and I find this quite significant, considering nothing this year was ever really "all right." 

A fact, I suppose, that I can appreciate now as I'd have hated for such encounters to End.

I am grateful for all those both near and far, both present and not present, for all those who have made 2012 the richest year of my life. I am grateful to those who became a part of my life, and more importantly, for those who will remain with me as I continue on into the year to come.  

Wishing All a Beautiful 2013. 

With Love from Baltimore, 
Mommy to One Princess and a Superhero

And for those who need a good laugh... this is Princess displaying her sisterly love after finding out that MC not feeling well means she must ring in the new year at her own house.

 Switching MC's swing to turbo speed...

and kindly "adjusting" his oxygen.

Saturday, December 29, 2012

If Our Kids Could Talk

Duane and I received two cards this week that were so incredibly special I just had to share. (We suspect they may have had some help from MC's amazing hospice staff, however, when asked, we got denials all around.)

The first was from MC:

This one brought me to tears. Both the quantity and quality of the decisions we have had to make this year have been enormous. I'll never forget the first of our endless "family centered meetings." After that meeting, I drove directly to my firm. A place run by people who had so generously stuck with me as week after week my homecoming from India was delayed. Without so much as a discussion with Duane, I resigned from my job.

The fact is, no discussion was needed. Hearing our worst nightmare confirmed-- that our son had a very serious neurological condition along with a host of other complications meant that for us, there was no choice. We had stopped at nothing to bring these children into the world, and we would stop at nothing to keep them here.
I know, he just keeps looking better every day. 
I'll be honest, it has been an extremely difficult adjustment. I never intended to by a Stay at Home Mom. 

And I most certainly never intended to be a Stay at Hotel Mom (April to August)
or a Stay at Hospital Mom (August to November)

or a Stay at Hospice Mom (November to present).

Indeed, I recall my first month in India watching I Don't Know How She Does It with my in-India bestie and thinking now that's the Mom I'm going to be. I mean really, I'm 30 years old. Give me a Starbucks and a few hours sleep and I can do anything.

But as I sat in that first meeting, I heard only one thing from the neurologist. So much of how your child progresses will be up to YOU. And he could not have been any more right.

The subtle nuances that we have observed from spending every possible moment with our MC have enabled us to make significant, life-saving decisions.

Decisions that cannot simply be posted on Facebook to "all my mommy friends." Can you imagine? Hey mommy friends, any recommendations for getting my child to breathe? Nope, sadly, our decisions do not work like that.

Nevertheless, it's easy to lose confidence that the sacrifices and choices we have made for these two children are, indeed, the "right" ones. I thoroughly appreciated this card... a small reminder of why we've made the ones we have.

We also received this card. A card, which like it's author, made us smile and laugh until our cheeks went sore.

Last weekend, Princess turned 9 months. In those 9 months, she has yet to meet a food, any food, that she has not liked. From her first taste of Indian ragi

to her more recent adventures in exotic eating
Princess officially enters a stage where we cannot take our eyes off of her for one single second. 
this girl has yet to turn down a single offering of anything edible (or inedible for that matter).

And as for that "love?" Let's just say that this Princess has a heart so big, she'll gladly love on anyone who will give her a smile in return.

Convinced it had something to do with spending the first 5 months of her life in the world's second most populated country.
After her second set of vaccinations, I decide that Princess is fair game for all the eager-to-hold coffee shop strangers. 
Her biggest, bestest "loudest" love, however, is always reserved for none other than her beloved brother. Watch below as she expresses it in full volume.

And while he may look unappreciative in the video, you can see by his half smile afterwards that the he loves her in the same way too.

Tuesday, December 25, 2012

All I Wanted for Christmas...

1. To see Both my children celebrate their 9 month birthday.
 2. To see Both my children help their Dad celebrate his 480th-- with a rock party hosted by MC in the playroom at his Home.
 A serious game of Uno with the nephews.
 Princess' second foray with ice cream. It's been reveled that a month ago, somebody may have forgotten her bottle while they were out, and somebody else may have been fed frozen yogurt to compensate. Such a resourceful team they are.

Princess hanging with the big girls.

3. To see my children play together once again. After a month of serious sickness, the two are finally well enough to enjoy each other's company.

4. To see presents under the Christmas tree labeled "To: Mommy." Love it.

5. Snow. The timing of our first snowfall couldn't have been any more perfect. It started on Christmas Eve as we loaded up the car to head back down to MC's house for our family sleepover. 

 6. To fall asleep next to this face. 
 7. To wake up next to these two. 
Pssht, wake up. I think Santa came. 
 8. For MC's health to improve. Two words. No oxygen. That's right, our Superhero has been doing so well this week that he's been able to comfortably go wireless for extended periods of time.  

 9. To take MC on his first field trip outside of his room. MC pretends to be asleep as his overly enthusiastic mother snaps a few pics on the elevator headed down to the living room in his Home.

10. To celebrate Christmas Together. 

Santa visits MC's house. 
 Of all the toys she received, Princess, of course, only wanted to play with MC's.
MC and his dashing good looks. 
The perfect gift. Thanks, Duane.

Wednesday, December 19, 2012

Vials of Hope

29 days later.

The 9th Floor.

Duane, myself, and two Vials of Hope filled with blood drawn the night before from our very own Superhero.

Two vials drawn immediately prior to his RSV shot. After which he cried. With sound. And shed his first real tear.

A real tear.

We've had several of these moments over the past week. Moments highlighting changes in MC that have been too significant to ignore.

This was my son two weeks ago.

And this is him today.

We've gone from planning a funeral to planning Christmas, from remaining bedside  to sneaking out for dinners, and perhaps, the biggest adjustment of all, from vowing that we would refrain from returning to the hospital, to heading through those doors once more.

Is it simply a reprieve from the horror of late? A true Christmas miracle?  Or the story of one incredible father who never ever gave up?

I think it'd be fair to say that it's all of the above.

For months, Duane has been researching vitamin dependent seizures, the symptoms and EEG patterns of which mimic Ohtahara Syndrome. Two weeks ago, when MC was in critical condition, Duane pushed to have vitamin b6 added to his regimen of over 15 daily medications. At the time, we had no choice but to continue to increase the dosages of his other medications, which we knew could leave us in a predicament, if by some miracle we saw an improvement in MC.

Which we did. A dramatic improvement. So dramatic that it has left us wondering whether the b6, was, in fact, the cause. 

After a week of continued improvement, we just couldn't ignore it any longer. On Friday night at 11 p.m., I fired off a desperate email to an old client who I knew worked in genetics at our hospital, and by 9 a.m. Saturday morning, a team of geneticists were arranging an immediate appointment for us in conjunction with our neurologist.

It was an incredibly productive meeting that resulted in: 1) further genetic testing to pinpoint a single gene associated with pyridoxine-dependent seizures, 2) an epileptic panel test to explore other genetic causes, 3) a doubling of MC's current b6 dose.

And while numbers 1 and 2 could be helpful, it's the reaction to number 3 that will tell us if we're headed in the right direction.

You see, one of the realities of using an anonymous egg donor and a gestational carrier in India is that we'll never have access to the medical history of our missing link, nor can we answer all the relevant questions regarding the pregnancy and birth.

We could beat ourselves up about it, or we could recognize that these are the realities we signed up for, and we wouldn't have our children otherwise. We've always done the latter, which makes delving into the genetics issues for possible clues but never complete answers, a difficult but necessary path.

Even armed with such information, however, we are dealing with incredibly rare diseases-- Pyridoxine-dependent Epilepsy being even more rare than Ohtahara Syndrome-- which means that we could still find ourselves left scratching our heads should MC's testing differ from that of the the very small population of children who have been diagnosed with these conditions.

Which is why we'll remain focused on treatment, the beauty of which is that, unlike trialing and erroring medication dosages, there is comparatively very low risk in doing the same with vitamins.

As for now, we are just basking in the enjoyment that is a rested and engaged MC, two incredibly giddy parents and one crawling Princess (I know, she totally deserves her own post) who will all be celebrating their very first Christmas TOGETHER.

Sunday, December 9, 2012

Dear Anonymous

I have never deleted a comment on purpose-- sure sometimes I accidentally do it when reading on my phone-- but never on purpose, and I'm not about to begin to now. I read each and every one, and cherish the fact that people whom I've never met in real life take time out of their busy lives to think of me and my family. I would love to respond to each and every one, at times I try to, but alas, keeping MC alive is a full time job which leaves little time for other activities.

I did, however, feel that it was extremely important to respond to one particular comment that I received on my Last Post, not because I necessarily feel the need to respond to the commentator, but rather, because Anonymous posed questions that I will inevitably ask myself one day. 

I do not know who Anonymous is (duh!), but my guess is that she/he is the parent of medically complex child, who may or may not still be living on this Earth. (I do know that she/he is not someone who knows us in real life, as she/he would be familiar with intimate details of our life that would have prevented her from making her final comment.) 

As they say, hindsight is 20/20 and by answering such questions in the Now, I hope that should I ever find myself asking similar ones Later, I can refer to this post to know how I would have responded in the Now, which is, in fact, the only way to respond.  

In response to Anonymous' comment:

"i would at least consider a trach..he could still have a meaningful life!! there are tons of groups on facebook for medically complex kids and their parents, and for special needs moms..give it a chance!!! dont give up so easily!!!"

On getting MC a trach. I would imagine that you don't hear this often from parents, but we would have LOVED to trach MC. We've had the conversations. We know what's involved. And just as we have always been when it comes to MC's care, we were more than willing to take on the additional responsibility of caring for him with this complex equipment. Sadly, there are several reasons that it would not help him.
  • His current weight would not allow him to leave the PICU if trached. Meaning, he would be forced to live in the PICU. For a child like MC, who seizes 24 hours a day, the PICU is a nightmare. It is stimulus overload. Busy, loud and bright. He goes for days without sleeping. I could never force MC to live in an environment that would ultimately harm him. 
  • The risk of surgery is too high. We previously elected to have MC undergo a "routine" g-tube/nissen surgery. This "simple surgical procedure" left him vented for days with collapsed lungs and a 2 week PICU stay. I could never elect for him to undergo a "very involved surgical procedure" as the risk that it would harm him rather than hurt him is simply too high. Moreover, we've never been in a position where the doctors have deemed him stable enough to undergo it. As I mentioned last post, MC has lived his entire life unstable. Pretty impressive for an 8 month old, huh? 
  • He is already on the maximum amount of respiratory support available, short of having a ventilator breathe for him, and such support is available at his Home. Perhaps "our"-- Duane, Myself, the Hospital Staff and the Home's Staff-- greatest accomplishment was getting MC Hi-Flow oxygen at his Home. This was our conundrum. The FDA does not allow C-Pap/Hi-Flow O2 in a home setting for children MC's size. MC needs Hi-Flow O2 (we can't use C-Pap because he aspirates) on a regular basis. Had we taken MC to our house on Lo-Flow oxygen, it's a given that he would have had to be transported back to the PICU within less than 3 days. We do not want MC to live his life in a hospital. We were thrilled to be able to find a Home where MC could live in a family setting and simultaneously receive PICU level respiratory support.
  • None of what I wrote above actually really matters. Yes, MC has chronic lung disease. Yes, he has frequent chest infections, collapsed lungs and scarred lung tissue. But he also has Ohtahara Syndrome. We have found that when MC's respiratory status declines we can administer all possible respiratory interventions without any of them having a noted effect. In fact, we found on Monday, that when we administered such support, his status actually deteriorated. What this tells us is that at times, it is his brain, not his lungs, telling him not to breathe. It is a devastating reality for us that we cannot fix his brain. 
On MC having a meaningful life. I fully agree that MC would continue to have a meaningful life if sedated on a ventilator. I am in awe of the thousands of people whose lives my child has touched. I receive correspondence every day of stories of people who have been inspired to pursue their dreams of having a family because of him, who give their children one extra hug a day because of him, who have found strength in his struggles to tackle their own. I have been told by his Home, which opened its doors not too long ago, that he has already taught them so much about helping families in our situation and how grateful they are for MC. We have registered MC for every available Ohtahara study that exists, freely giving access to his medical records to anyone who has requested them, in hopes that some day there WILL be a remedy for fixing the brain of a child with this disease. 

Indeed, MC is such a a special child, that his life will continue to have meaning long after he is no longer here with us on Earth. 

Sedating him on a ventilator would not make his life any more or less meaningful, however, it would extend his life on Earth beyond the point at which he has told us it's time for him to leave. Placing him on a ventilator would put the decision for when he leaves in my own hands, and I whole-heartedly believe that this is not my decision to make. 

On finding an online support group. Can I tell you how much we love our Ohtahara Syndrome facebook group? And our Yahoo group? And, of course, our fellow blog readers and writers and the special woman who I've never met in person, but with whom I have weekly phone conversations about life as the mother of a medically complex child? If it's out there, we have joined it, and we are so incredibly grateful for the knowledge we have gained from doing so.

On giving up. I can understand how someone not in our position would be concerned that we are giving up. I can also understand how someone who has been in our position would be concerned that we are giving up-- again, the reason that I am writing this post so that I do not find myself in such a position. It would be absurd to think that I will coast through life without questioning every decision that we have made for MC, but I can tell you this:

I lived this past Monday thinking that it would be MC's last day here on Earth. In fact, it was not, and I truly believe that it was MC giving us an opportunity to reflect on the actions we took, so that when the time actually comes, we can know that we did everything in our power to give him the life we know he deserves. I am confident that we have.

From traveling across the globe to conceive him, to arranging an air ambulance to rescue him, to admitting him to the number one neurology hospital in the country, to giving up every aspect of my life to move into the hospice home with him, to spending hours on Monday supporting his chest with my bare hand so that he could remain  in a fine tuned position that would allow him to continue to breathe. I do not feel the need to share details about our exhaustive efforts to heal MC, about the sacrifices we have made for him, about the selfless decisions we have made to give him comfort at the expense of our own, as these are decisions that Duane and I, and only Duane and I, will have to live with for the rest of our lives. What I will share with you, however, is this:

I have never ever given up on MC, and I never ever will. 

Friday, December 7, 2012

On Being A Mom in the World of Ten

This past weekend, noting that MC's status had declined significantly, I asked our hospice director just how sick she thought he was. On a scale of 1 to 10, she said, he's about an 8 or 9. 

I expected this answer, it being consistent with what I would have responded had someone posed the same question to me. The grave assessment, however, left me no more concerned about MC's health than I have been for the past 8  months. You see, the fascinating thing about MC is that he has managed to live his entire life as an 8 or 9.

Until 3:42 a.m. Monday morning... when he entered the World of Ten.

At that time, he had exhausted all available respiratory support options on hand at his Home, and the next step would be to transfer him to the PICU for ventilatory support.

I had already decided previously that when we got to this point, I did not want MC existing sedated on a ventilator... as his condition predicts that he would never come off.

It is, however, one thing to make such decisions hypothetically, and another to make them in the moment.

Duane arrived shortly, and ultimately, we decided that we would not take MC back to the hospital. We would begin to live in the World of Ten.

For a while now, I have had a vision of what I wanted for MC when we arrived in the World of Ten.

Everyone who meets MC remarks on his spirit. A baby buddha, a magical child, a wise old soul-- these are just some of the descriptions I've heard from others.

But this remarkable spirit, it struggles to exist parallel to total chaos and confusion.-- constant seizures, uncontrollable convulsions, labored breathing-- it is often exhausting just watching MC be.

As I was reflecting on who MC is, and what I wanted for him when we arrived, I realized, incredibly, that MC is India. A tranquil spirit amidst tangible turmoil.

At this point in time, my only wish for my Indian spirited child is that he find peace. 

On the surface, it might appear that this decision would be in direct contradiction with what I want for myself. After all, peace for MC means choosing drugs that will sedate him, rather than allow him to interact; positioning him so that he can breathe easier, rather than cuddle him in my arms; allowing him to remain in his Home, rather than exhaust every possible medical intervention.

But in fact, MC has given me the greatest gift ever.

For the longest time, I struggled with not feeling like a mom. I had always anticipated that once my babies were born, I would recoup those lost surrogacy feelings by engaging in playgroup/babycenter/SAHM overdrive.

In fact, these past eight months have been unlike anything I  ever imagined, and I have to come to realize that all those little things that I thought would make me a mom, didn't really matter at all.

Ever since Monday, when I began living with the knowledge that my son will die, I have FELT it with every decision that I've made. I have FELT that I am A Mom.

Because making selfless decisions irrespective of my own feelings so that my child can know peace, THAT is what it means to truly be A Mom.

Thank you, MC, for teaching me this. Thank you for making me A Mom.