On Parenting Twins: One by My Side and One Flying High

It's was the 23rd yesterday.

Fourteen months for the Princess. 

Infinity for MC. 

The logistics of celebrating the day have never been easy.

I looked back yesterday morning to see how I managed one year ago from the day and realized that since the very beginning I have been navigating the same issue. One mommy and two children who could never manage to agree on a shared address.

I feel that recently I've finally found a good rhythm for the non-23rd days of the year.

To the world I am the mother of "1" child. The "1" child that others can see, touch and (always) hear as we cruise the aisles of the grocery store, as we stroll the sidewalks of the neighborhood, as we play meet and greet at a restaurant table. 

Must. Say. Hello. To. Everyone.

Completely unrelated-- my first Mommy Ticket for the Princess' Houdini-like shopping cart performance. 

If asked, I will confirm it. Yes, she is my first. Yes, she is my only "1."

And with my daughter best described as the girl who gives candy to strangers... and then subsequently holds them hostage for their attention as she chats or dances or engages in one of her many "only child like" performances, I am asked a lot. A whole lot.

For awhile I stuttered. Unsure of what to say. Answering with "2" always seemed to prompt a slew of other questions which could only be answered by my launching into a story of India and preemies and rare syndromes and eventually death... a taboo subject in America which nobody is ever comfortable discussing. 

And so, to avoid such awkward conversations and then my having to comfort someone else in a place like, the grocery store, I just go with "1." 

Which MC is cool with. (I know because I asked. We chat all the time.)

But then the 23rd comes. And it's so much harder. Because to the Princess, I am also the mother of "1" child. Which is exactly the way I want it to be. The reality is that her only memories of MC will be photos and keepsakes and family activities we do to honor his spirit.

Donning our best superhero t-shirts, we walked for the Epilepsy Foundation in D.C. 

And just as I never wanted her to be  "The Girl Born Through Surrogacy in India," I would never wish for her to become "The Girl Whose Twin Brother Died." 

While both experiences will contribute to her unique identity, I will work to ensure that they never define her. 

And yet, regardless of how it looks to everyone else on the outside, including my Princess, to me, I will always be the mother of "2" children. 

"2" very special children born on "1" very special day. "2" children that I will celebrate in my "1" heart... forever. 

Princess Nanny 3.0

As we approached the third trimester of our surrogate's pregnancy, Duane and I began to contemplate the childcare situation. With both of us working long hours in offices located a short distance from our home, we had decided that an in-home provider would be best.

I contacted an au-pair agency and after obsessively checking references, examining driving records and spending exorbitant amounts of time on Skype, I was confident that I had the found The One. Right about the same time that I got The Call... that our babies had been born 10 weeks early. 

With me in Delhi, the babies in Pitampura and Duane in Baltimore, the need for a nanny in Baltimore became obsolete. A housekeeper, maybe. But a nanny? Not at the time. Duane (and Carlos), from what I could gather through our often ill-connected Skype conversations, appeared to be doing a satisfactory job of taking care of themselves.

With the Princess' release from the Indian NICU fast approaching and MC's release no where in sight, the need for one in Delhi, however, was becoming a priority.

Funny how all that researching and obsessing and worrying that I had done in America flew right out the tuk tuk when I was faced with no choice but to hire someone, immediately, in a country where I had been informed by one of its well-meaning residents that given the Princess' fair skin, she would be worth at least an $85,000 US kidnapping ransom. Um, good to know...

As it turns out, not only did I find a phenomenal caretaker for the Princess, I found a friend, a roommate, a confidant, and an overall special connection to my children's birthplace, whom I will do my best to maintain contact with as the Princess grows over the years.

I could always count on a "surprise" when I returned home from visiting MC in the NICU.

When we (finally) made it home five months later, I found it unrealistic that I would ever find another caretaker who could fill the former's moccasins, but unbeknownst to me, sitting right in Duane's office was a second light in our lives who would quickly become another extended member of our family.

While we likely roped her in with a job description that looked like the following: 

Need someone to sit for the Princess a few hours a day while I'm at the hospital with MC.

What it should have looked like is this:

Need someone available 24 hours a day, 7 days a week, to do It All, including but not limited to, acting as a surro-mom to the Princess when I'm quarantined at the hospital with MC, receive calls at 3 a.m. in the morning (often) that  Duane needs to rush to the hospice home because MC is very sick, again, cope with the dynamics of a family that has been separated for 5 months and is about to witness the death of it's precious youngest member, care for not only the Princess but Duane and Carlos as well (because at this point they absolutely needed it) and maintain a positive cheery attitude through it all!

Would you believe that we found someone who was not only able to fulfill the latter duties, but exceed them, always, with both style and grace?

Super Fabulous Nanny and her Styling Mini

Yes, we have been incredibly fortunate in the nanny department, and I am hopeful that our luck will continue. After MC passed and I "moved" back home, Super Fabulous Nanny began work for Duane again, and now that I'll be returning to do some of my former work, I've been unable to steal her back from her boss for the hours that I'll need.

Interviewing someone tomorrow to "sit for the Princess a few hours a day." That's all.

With Interest.

That's how our NICU bills from India were (finally) reimbursed.

1 year, 1 month and 22 days later.

While I wish I could chalk it up to the fact that I was simply dealing with an incredibly disorganized and incompetent organization, as one of the insurance company's (employee of the month quality) customer reps so eloquently put it: "When we get claims for a lot of money, they just get denied."

Oh.

This was bad news, as MC's Indian NICU bills were the first of many "claims for a lot of money." 

My situation was not unique. Ok, maybe the 5 months of Indian NICU bills were.

But ask any SNandMCK parent about their efforts to get their child the care he or she needs, and then to, gasp, get it paid for, and you'll hear the same stories again and again. 

5 hours on hold... only to be hung up on.
My supervisor is on vacation. My supervisor is in a meeting. I am a "senior" representative... so you can just speak to me.
We're denying coverage, but we don't have a policy provision to support the denial of coverage.
You can't appeal because because we're not denying coverage, we just won't handle the claim.
No, we don't have a copy of your contract.
I can't give you my last name. I can't give you my email. I can't give you a call back number. 
No, the person who made the decision is not allowed to speak to you. 
We would have called you regarding the claim, but you said you never wanted to hear from us again.

Disgusting.

It became a joke at the hospital when MC first returned to America that I carried my insurance contract around with me in my purse. After a few more weeks, I didn't even need to-- I had the darn thing memorized.

I was lucky. As an attorney, I knew how to play the game, and that eventually, after going through multiple appeals processes and filing complaints with the Insurance Commission, my claims would someday be paid. But had we had to hire someone to do it for us, I can only speculate that we would have just given up.

Besides the fact, it's bittersweet. I'll never recoup the hundreds of hours of MC's life that I spent sitting on hold, sitting at the Department of Health, sitting reading and rereading that contract. Duane will never recoup the hundreds of days that he spent working at home, wiring money to India, so that he could not only cover the NICU bills, but the additional expenses of my living in India. Neither of us will ever recoup the time that we missed out on with MC because sadly, he is no longer here.

In keeping with his giving spirit, however, I'd like to provide the following helpful tips for anyone in India that should find themselves in a similar extended NICU situation:

1. Secure itemized bills. Pharmacy, services, labs. The more detailed the better.
2. Secure all medical records. While common for our original NICU to hand out a discharge summary, my request for All the records was "foreign." Such records are not only helpful for filing claims, but for evaluating any medical conditions that may be discovered upon return home.
3. Scan the medical records onto a disk before departure. Our original NICU records consisted of over 400 pages of handwritten notes. For about $90 US, I had everything scanned in at a shop in Nehru Place Market.
4. Pay with a credit card and ensure that your invoices correlate with payment.
5. Make payment directly to the NICU. For the advance payment that I had already made to our surrogacy clinic, I secured an affidavit stating that the payment had been forwarded to the NICU.
6. Save all of your receipts.

For All the Future Princesses and Superheros

This week I attended Resolve: The National Infertility Association's Advocacy Day. My second time attending, my first as a Mom.

It's a beautiful two day event during which women (and an increasing number of men) join together from all over the country to race around the Hill, spreading awareness about the disease of infertility.

Specifically, we asked our legislators to show their support for the following 2 bills:

The Family Act

Women Veterans and Other Health Care Improvement Act of 2013

The first would make infertility treatment more affordable via a tax credit, while the second would make treatment accessible to those who are unable to conceive as a result of their service to our country.

I did a lot of reflecting afterwards, as this was my first time advocating as a real live Mom, and again and again I found my mind wandering to an inquiry that I had received about a week after MC had passed.

A friend of mine, who graciously mentioned that she might be interested in being our surrogate, had asked if Duane and I were considering a "sibling project."

I recall being bombarded by a Loud internal dialogue that went something like this:

Considered? Friend, I am an Infertility Lifer. I clip adoption ads like you clip coupons. And I will. Forever. 'Cause it's just what we do.

Project? Projects are for elementary-aged kids in science class. Sibling worldwide hundred thousand dollar venture would be far more appropriate.

Duane??? Oh, Du-ane! Right. That good looking guy who lives at the same address as me who I've just resumed speaking to after five years of trauma.

Followed by a far Quieter dialogue that went something like this:

oh. well it doesn't matter anyways. we could never ever afford to do that again...

It's a fact. The emotional, physical and financial impact of infertility is HUGE.

But while support for the emotional and physical pain of infertility exists, for many, there is no getting around the financial obstacle.

Advocacy Day, this year, was my gift to those women who are still working tirelessly to celebrate their own Mother's Day.

Should you wish to help create more Moms, contact your legislators today to let them know that you support bringing more Princesses and Superheros into this world.

Happy Mother's Day from Baltimore, 

One (finally) Mom

Master Cheeks Memorial Page

March 23, 2013.

As the date approached, I struggled with the idea of planning One celebration for my Two unique children. 

One beautiful daughter whose center of attention personality warranted the  biggest, loudest, most sparkly Celebration this Earth had ever seen.

And one gentle son whose sweet soul would enjoy nothing better than a slow, quiet day with a long bath, minimal people and a bit of soft music in the background.

Ultimately, I never had to reconcile how I would honor the individual spirits of each, as our Master Cheeks passed away just two weeks prior to his (and the Princess') first birthday.

It became clear to me, shortly afterwards, that this was MC's plan all along. That he had decided that the only way to celebrate was Together, with one Princess by my side

and one Superhero flying high.

The following day we held a stunning Celebration of Life that will be etched in our hearts forever. So that it may remain etched in our minds as well, I've created the following Master Cheeks Memorial Page which captures the day in both words and pictures. 

A special thank you to Erika Lyn Photography and Icing Smiles for their beautiful contributions to this day. 

A Belated Blogoversary

Last Monday was my 2d Blogoversary.

Unfortunately, I haven't been able to write because my laptop somehow landed itself in the repair shop. Clues point to Duane's new IT specialist as the culprit...

but when questioned, all I got in return was a mischievous one eyebrow raise.

Photo by Erika Lynn of Capturing Moments Photography

Nevertheless, it's left me with a lot of time to think about what I would have written, had I had something to write it on.

After a week of reflection, I've decided that I would have written about the friendships I have gained through this forum. Extraordinary friendships, without which, I would have woven a dramatically different story.

I came across this quote the other day and it reminded me of these special friendships:

"Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down. " ~ Oprah Winfrey

One might say that my limo never seemed to find its way out of the repair shop these past two years, and that the substitute transportation, at times, was a heck of a lot less comfortable than a bus. 

First ever carseat in a tuk-tuk

And yet, because of this blog, it was a rare occasion that I ever opened my eyes to an empty seat. Through negatives and pregnancy loss to NICU stays and an evacuation home, to the devastating news of MC's disease and his most recent passing... I never rode alone.

Indeed, this past week, one very special friend, who, without complaint, rode the good ride with me all over India, flew in from another country... to ride with me once again.

Rishikesh, India, Spring 2012

Washington DC, Spring 2013

I have no idea what this next year will bring. Duane mentioned the other day that after all we've been through, he really felt that Life had to have some limo rides in store for us. I'm not so sure about this.

One thing I've realized about Life, is that a slew of bus rides does not guarantee you a limo. 

But what I've also realized is this: The unexpected bus rides can be equally enjoyable... so long as you're in the right company. 

Thanks to this blog, I am.

.

Falling Gently

On Wednesday, I returned to MC's Home for the first time since he passed. Returned to pick up the last of his belongings.

Not as hard as I anticipated. Not as easy as I would have wished.

Shortly after he died, I was asked by an acquaintance how long before I crash?

A valid question.

Through MC, I had learned that my natural coping strategy is to stay Up. Don't think too hard. Avoid naps at all costs. Go, go, go.

A year ago Wednesday, I went. Went right to India on a one way ticket. Failing for the next 12 months to ever find my way home.

We often likened MC to the Energizer Bunny--the boy who just kept on going... with his Energizer Mommy in tow.

Until March 10, 2013. When he fell gently from this Earth.

And inspired me. As he often did. To fall gently, too.

To inflate a parachute with supportive friends, breathable environments, and, of course, One Joyful Princess... to just Fall. Gently.

And perhaps, dare I say, enjoy it along the way?

The week following MC's service, Duane was scheduled to go to Florida for work. He suggested that the Princess and I come. The warm weather was enticing, but the thought of packing another suitcase, when I had finally just moved home two weeks prior, was enough to send me crashing. So too, however, were Duane's own thoughts of boarding that flight alone.

So we Went.

Dear Princess, we call this a commercial airplane.  Get used to it.

And Fell Gently. And most definitely enjoyed it along the way.

On the days that Duane worked, the Princess and I took 5 hour morning walks along the beach. 

Breathing, laughing, crying along the way. 

Stopping at what became our favorite sidewalk cafe for breakfast each morning. Where, not surprisingly, the staff started holding a table for the one they dubbed The Princess.

Thrilled to learn that the restaurants in Florida serve Puffs, too!

Perfecting her newest trick-- the royal wave-- she spent hours greeting each and every man, woman, child and dog that graced Ocean Drive. How could I not find laughter?

Waving all morning long

and into the night.

When Duane arrived back at the hotel, he joined us at the pool. We suspected that her royal highness would enjoy a giant bathtub full of extra people, but we had no idea just how much.

For the rest of our time in Florida, hotel guests would often come up to me in the lobby and refer to me as The Girl from the Pool's Mom.

It was reassuring. While the audible reference to "Hayden's mom" has become drastically less frequent, it's comforting to still hear that I am A Mom.

Even more comforting was the fact that here we were, 2000 miles away from his Home, and our own Master Cheeks was with us every step of the way. 

After relinquishing dreams of baseball and football, Duane had decided a while back that he and MC would enjoy a hobby of classic car shows. A suitable activity that MC could participate in without straining his physical limitations. Sadly, they never made it to a show while MC was alive.

On our second night in Florida, we came in from the pool, passing an empty park alongside the hotel, and went up to change for dinner. Less than a half hour later we came back down... and darn if that park wasn't filled with classic cars.

We walked a long time that night. Breathing, laughing, crying along the way.

It soon became clear, that just as we suspected, MC would always be Everywhere we went.

Florida's version of the tuk-tuk.

On the beach.  

As the subject of a majestic outdoor Easter service.

Wearing the gorgeous purple shawl from my fellow Ohtahara Syndrome mommies.

Engaging in his infamous one eyebrow raise at his bursting-with-life twin sister's antics.

Just in case I only get one bite... I'll make it a good one.

Always by my side, as I Fall Gently into this new chapter of Life.