It's My Birthday, and I'll Cry If I Want To.

35....and counting.

It's just short of two weeks since the girls passed. I have been to the grave several times since then. To reclaim the cross arrangement from the site. To refresh the grounds with new flowers.

I am heartened that I can see them from 82nd or Holgate. It will be good to visit them.

So....another year older. Spent the afternoon with family and shared a tasty birthday BBQ. My mom, dad, aunt and I have birthdays between April and May, so we celebrate as a unit. It's like Christmas in Springtime. Greer played nicely with his younger cousin - and generally wore himself down with horseplay and shameless giggling. Later, I received a couple of birthday phone calls - including a serenade from my pastor and her spouse. What more can you ask for?

I do feel a little foolish for allowing my 35th to pass (on a Saturday night, no less) without some sort of evening celebration with my friends, but given the circumstances of the last month..... Maybe we'll do something later. I would enjoy the company.

Spent the last couple days working and cleaning, for the most part. We approved the headstone for the girls on Monday - and look forward to seeing it placed sometime in late May/early June. There have been breaks....a lunch together, a walk in the park - and the spontaneous procurement of ice cream. Greer has been in daycare part-time - and we've been spending a lot of effort trying to reclaim the house from the last several weeks. It's something that keeps us occupied while we process things. Each room is getting attention - and the basement is gradually becoming less of a pit. The yard is still a jungle, but I expect to address that next week.

My recent screening at the Clinton was its usual lowbrow self. A small group for each of the DAY AFTER EARTH DAY shows. Still, I enjoyed every minute of it. Showing films felt normal, and the subject matter was close to my heart.

The Clinton has helped fill a space in my soul.

When the girls were still in the hospital, I took some time away and attended a sold out screening at the CST of Les Claypool's new film, Electric Apricot: Quest for Festeroo. When I arrived amongst the throng of fans, I found immediate support from the theater staff. Hugs and tears all around. Since Seth and Nicola know Les and his wife, I found myself at their table. It was a surreal experience as I sat across from them - prior to the show - and had to tell them my sad news. It was the only thing I could bring as a conversation piece. Thankfully, they were kind - and offered support and sympathy. In the midst of it all, Seth asked me to introduce the film and the director/producer Q&A following the show. It felt so strange to come from such sadness - to the thundering applause of a theater full of people. It was a gift. A moments rest. And then it was over.

When I first met Les, it was at a concert, right after we had Greer. I was a new father.

I wish the second meeting could have been more like the first.

Resting at the beach

Sitting in a Lincoln City internet cafe - thinking about the past week. Alex, Greer and I have escaped to the coast with a little help from some friends. Some time to ourselves to release a little stress.

It's been decent weather - and Greer gets a big kick out of the beach. We stopped by Gleneden Beach last night to watch the surf - and managed to get our feet wet when a sneaker wave caught Greer and I. He was laughing the whole time. He also enjoyed the Oregon Aquarium in Newport - and couldn't stop talking about the sharks.

I'm on my way back through town to pick up some necessities - and maybe some shrimp to cook up.

We'll be back this weekend...I'll be doing a show at the Clinton on Sunday night.

Reflecting on things...

Time experiences an elasticity when you are in crisis. Your focus tightens and you are consumed with the resolution or outcome. The last two weeks feels like two years. We shared the girls for 14 days - and in that time, they met almost all of our family and friends - had at least a thousand photos taken of them - got to interact with their big brother, Greer - take a stroller ride in the park on a sunny day - and became a beautiful vortex for our family. They were loved unconditionally and completely by family, friends and complete strangers. All of that living in 14 days.

Placing the girls to rest - however - turned out to have some challenging moments.

When we realized that the girls were going to pass - I suggested that we use a family plot in the Pioneer Cemetary at 82nd and Holgate - where my great grandparents (Peck) are buried. There was some concern about the nearby traffic, so we checked with another recommended modern cemetary nearby - that wasn't so close to a busy street. At this cemetary, the plot was free because of their age. So....after we settled on a few details (and some paperwork) with a funeral counselor - we went to look at the site....which sadly, was not what we wanted for the twins. The site was crowded and had no character. It also was a special children's section, so it had a very sad feeling (pinwheels, toys, etc) associated with it. After some quick phone calls, I canceled the arrangements and set up the internment for Pioneer Cemetary. Thankfully, we've never been more sure about the decision - and the resolution of this gave us a better peace about where the girls would be. It also affords us the option of being with them - when Alexis and I retire from this mortal coil.

Before the graveside service, I went into our backyard and picked some grape hiacynth to place in the casket. Something from home to take with them.

Saturday morning at 11am. It was raining lightly and looked somberly cinematic in mood. Men and women dressed in black. A tent erected in a graveyard. A small casket. I was wearing a new black suit - and feeling older. I don't remember all the words that were said, but it was beautiful and sad. My brother took a camera and helped record a few important moments. The placing of flowers. The often unrecorded actions of beauty.

The memorial on Saturday afternoon was amazing. I saw so many old friends. It was one of those times where your faith in humanity receieves a lift. So much support and love - that I can hardly express our gratitude. The church was packed (about 175) and the service was much what I had hoped for. A celebration and affirmation of life. Our beautiful girls...

On another note....the floral arrangements at the church memorial were later crafted into a flower cross for the Easter Sunday service. Just knowing that these mourning flowers - could be transformed into a celebration of resurrection - made me smile.

After Easter, we placed the cross with the girls. It looks beautiful.

Services for Eleanor and Quinn

For everyone who has traveled with us on this journey.....

We will be having a memorial service for Eleanor and Quinn this Saturday (April 15) at 4pm.

Here is the address:

Bridgeport United Church of Christ
621 NE 76th (1 block North of Glisan)

Again...thank you for all your support and prayers.

Eleanor and Quinn - Rest in Peace

It's all over.

Eleanor Peck Hamilton passed into glory at 2:15pm this afternoon. Alexis was holding her in our living room when she slipped away.

Rowan Quinn Hamilton followed her sister at 3:40pm - after having a couple of small seizures. She was tenacious until the end, when she died in her crib - her mom and dad holding her hands.

Goodbye sweethearts.....heaven is your playground.

Wednesday's children

Quinn looks to be going home very soon. Her color and tone have changed dramatically in the last 12 hours, and her breathing has dropped off as well. Eleanor seems to be not far behind. Since this morning, she has slowly been changing color and drifting.

Both have started receiving regular doses of morphine and another anti-seizure drug to help alleviate any discomfort.

The next 12-24 hours will probably see the twins complete their journey together. Family is gathering - and they will be surrounded with love when they go.

Your continued prayers for peaceful transition are loved and appreciated.

Another dose for Eleanor

Still trying to keep up with my early/late updates. Just came down from sleeping next to Alexis and Greer. Eleanor was showing more signs of distress this morning (pinched face, etc.) so I gave her another dose of morphine to calm her. Quinn seems to be fine - although she cries softly at times. She's been the one with the voice thus far. Yesterday, when we were holding them, our hospice doctor spoke admirably of Quinn's sweet singing - a singular note that she would intone after each breath. We listened to it through the stethoscope and imagined the songs that might have been.

Starting to get a little sad again. The need to give painkillers to the twins brings me back to reality. I've been so busy enjoying them at home, that I've ignored the shadows. Now....I'm just asking God for one more pain-free day.

Today will see more visitors - and the prospect of a family portrait. My aunt Maxine and Uncle Ed are coming by - as are my photographer friends Mike and Amy.

I just would like them to be stable and calm....and hope that their coming passage is much the same.

Full day with some distress

Fairly relaxed day with the family (Alex's sister, husband and neice are staying with us) that included a trip to a local park - using the wonderful twin stroller we'd received. Greer road shotgun - while the twins cuddled in the big back seat. I arrived with mom for a short time of playing on the swings/slides with Greer. The girls sat with mom and soaked up a little sunshine.

Received visits from Susan and our Hospice nurse. Seth and Nicola stopped by with their kids and said hi. While the nurse was checking up, Quinn decided to start feeding a little - sucking for a minute or two. She also opened her eyes several times while she was pulling away on the nipple. Eleanor made a little effort - but they are still not getting much.

After dinner, we camped downstairs to watch some Star Trek - when Quinn started to register a little distress on her face. After several expressions that looked like pain, we gave her a dose of morphine that the doctor had prescribed for such an occurrence. Not long after Quinn....Eleanor began to make similar faces. We gave her a dose as well. Both are relaxed now, and sleeping in our room - along with Greer. We'll keep checking throughout the night to make sure they are comfortable.

I've posted photos of this past weekend....please check my Flicker site.

Another day with the girls...

It's early on Tuesday morning, and I'm trying to write while the house is still asleep. Alex is concerned that my efforts to process all of this is taking me away from my family during these precious days. So, I'm making an adjustment...

Since they've been home, the girls haven't eaten much - if anything. Our decision not to tube feed is very hard for me, but I still stand behind our decision. We are offering them the bottle and breast, but they are so affected by their condition that natural feeding isn't happening. The hospice nurse told us it could take up to two weeks for the process to finish - if they continue to refuse milk. Even though I know it will prolong the grief, I pray that God would give them strength to eat....just a little.....if only to see my sleeping beauties nurse again.

As we were sitting with Alex's parents late last night - holding the girls - I spent a long moment looking at Eleanor. She and her sister are becoming more beautiful as the days pass. Headed into their second week of life, they have an ethereal glow. They are the most perfect dolls - their bodies soft and at peace. They don't cry or move - except for the soft gurgles and occasional hiccups.

Today we will go out with the girls. Perhaps to the Japanese gardens or another peaceful spot.

We're just glad that we have this time to be with them.

God's laughter

"If you want to hear God laugh, tell him your plans."
- Old Yiddish Proverb

This weekend was staggering and beautiful. Alexis and I were overwhelmed with love and support as we shared our daughters company with others. Wave after wave of prayers, hugs, tears and humanity. Old and new friends met with us, held our babies, and shared the weight of our circumstance. Greer was able to meet his sisters for the first time - and seemed to understand - by repeating "Quinn (Eleanor) sick!"

When the visiting time was over, our family retired for some dinner and a little distraction from the coming sadness. Our families sat across from each other and ate what felt like a last meal of sorts....knowing....but not really knowing what was to come. Afterwards, Alexis and I walked over to the chapel and prayed for the girls and wept. I noted a woman kneeling in a nearby alse.....and I saw her stand and leave. A moment later, she returned with a box of Kleneex and few kind words. Just one of the countless acts of compassion we have experienced on this road.

When we finally arrived in the NICU, the weight was heavy. We were late, but the resident harpist who came to perform for us had already begun playing for the girls. We cried as we took turns bathing their tiny bodies - careful to avoid pulling on their tubes and wires. We removed the pajamas that the NICU had provided and dressed them in their homegoing clothes. A pair of nurses came to help turn of their machines and finally...the remove their breathing tubes. When the tubes were out and they we free, it was like our babies had been returned to us. No more manmade luggage. They were beautiful.

We walked down a long hall to one of the patient suites where our family was waiting. The girls were cooing and gurgling as we sat in a pair of rocking chairs. We were soon joined by the harpist who continued to play - as we began to spend our time together as a family. Greer greeted his sisters again and worked the room....a tired and distracted boy. He touched them on the head and spoke their names. Before he left with Uncle Chris, he looked back and said "Bye, Quinn. Bye, Eleanor."

We sat there for hours. Talking, crying and celebrating our time together. I felt the sadness come and go. Every time I felt my heart cave in - I would hear Alexis say "I know." It has become our mantra.

After a while, it became apparent that the girls were doing ok without the respirator - and we started to make plans to go home with them. Our pastor, Susan agreed to drive us home - and stay the night with us. We held them close in the backseat of our van as we rolled up Highway 26 toward town. As we crossed the Ross Island Bridge to our eastside home, I told the girls about the different streets we were travelling on - and about our favorite places in town.

We arrived home around 1:30am - and sent Uncle Chris home as we prepared the girls for bed. To see them back together in their crib - twins together without all the tubes and wires - was a blessing. They snored softly and occasionally would let out a little cry. Despite the everything that had happened up to then - I felt a peace and joy that had eluded me up until then. They were home.

That night, we slept and slept....waking occasionally to check the girls. At 5am, I awoke to Greer wanting to join us in bed....which he did with a certain amount of toddler restlessness. We dozed until 7am - and were greated by the girls soft noises and sighs. Nothing had changed much. Both their heart rate and breathing were normal and there were no signs of distress.

Today was about relaxing and enjoying time with the twins. Both families came over and spent time holding and cuddling with the girls. Greer continued to discover his new sisters by holding them and giving kisses on their forehead. He also like taking off their hats - only to come back and attempt to put them back on. All in all - a good day.

In the meantime, the generosity of our friends has been overwhelmingly wonderful. We are brought delicious dinners, flowers, cards and the prayers of many.

We can't tell you how much it means....

Our big weekend

Hello everyone.

The last couple of days have led us to make some terribly difficult decisions. After our meeting with the Hospice specialist on Thursday, a Genetic Counselor on Friday, and our loving pastor, Susan all throughout the process - Alexis and I have moved forward with a plan to release the girls from all their support systems and allow them to pass away naturally. It's the hardest choice we will probably ever make, but Alexis and I want them to be at peace and not suffer the seizures and physical decline that will accompany their disorder as they get older. Better that they rest in the arms of eternity and be free - than for us to hang on to them when there is no hope of recovery.

We have organized this weekend as a time for family and friends to say hello/goodbye to Eleanor and Quinn. We have small blocks of time reserved in the NICU for visitors on Saturday/Sunday - and will be celebrating their lives as we go. After everyone has had a chance to visit on Sunday, Alexis and I will dress them in the outfits they would have gone home in, and have some private time. After we are ready, we will have our immediate family join us - at which time we will take them off their ventilators and wait for them to pass into glory. While there is chance that they may hang on for a while, we expect that they will go quickly.

It has been a week of unbelieveable grief and heartache - and we can't see putting our family (and most importantly, Greer) through more than necessary - especially when Heaven awaits them.

Riding the unfathomable waves

Alex and I had our immediate family around us yesterday as we headed back to the hospital for another meeting with the doctors. As we sat together in the NICU with our loved ones - we started to hear the hard details of our exceedingly rare and sad case. The twins are suffering from nonketotic hyperglycinemia (or NKH), a very rare (1 in 250,000) genetic metabolic disorder that creates elevated levels of glycine - a basic animo acid - in the blood and brain. There is no known cure - and brain damage and eventual death is sure - even with the aggressive therapies that are available.

I can't express to you how hard this is. Sadness comes to us in waves. We cry in shifts - and are just trying to cope as best we can. Having our parents - and the support of our family and friends has been a tremendous help. After we visited the twins yesterday, we picked up Greer and headed out for some lunch and a little time at the duck pond. Just for a short time, we were able to push back the heartsickness and focus on our family - and most importantly, our beautiful boy. He truly is a blessing and a miracle.

Today we have an appointment to see the hospice doctor to discuss what our options might be if we were able to bring them home. We may not even have the opportunity - as both Eleanor and Quinn are now on assisted breathing.

As much as I anticipate seeing them again, there is an unfathomable pain that comes with it. It is like watching someone you desperately love disappear slowly into space. You know there is peace and the arms of eternity waiting for them, but you are left behind to bear the loss.

Please continue praying and thinking of us as we continue this journey.

Heartbreak on a beautiful day...

It was a beautiful day today. The sun was shining through and the air was warm. Sadly, we could not enjoy it.

Today we learned the news that changed our lives. According to an OHSU specialist and Eleanor and Quinn's attending physician - Dr. Rabin - the twins have an untreatable metabolic disorder that will eventually end their lives. Sadly, they are in perfect health, with the exception of their inability to metabolize a crucial protein that the body produces.

The doctor said they might survive as long as two years - but they will never awaken from their 'sleep'.

We are heartbroken.

After we received the news, Alex and I had a chance to hold the girls in our arms. Despite all the tubes and wires coming out of them, I could feel them move, breath and make small, infant noises.

I have never cried so hard in all of my life.

Photos from ICU - still waiting

Nothing new to report this morning - other than we should be hearing from OHSU sometime today. Depending on the results, the girls might be headed over to Doernbecher Children's Hospital.

I've posted a couple photos of our beautiful girls from ICU.

Waiting for OHSU...

Even though today didn't yield much change for the twins, the doctors may be onto something. Their metabolic investigation showed a potential intolerance for protein - one that resulted in elevated levels of ammonia in both their systems. Ammonia in high levels can be toxic to the brain and creates lethargy and hypotonic behavior - very similar to the twins behavior. Currently, the twins are on a protein-free IV drip - which seems to be curtailing the ammonia issue.

Additionally, Providence sent bloodwork to OHSU for further metabolic analysis - and we hope to hear from them in the next day or so. If it turns out they need a special diet to fit their possible metabolic disorder - they may need to be relocated to OHSU for a spell. Ugh. Well....at least they would be closer to us.

During our visit today (after we dropped Greer w/his aunt Dianne), we were able to hold both of them for a short time. Alex and I switched back and forth - talking softly to them about our day - how their big brother Greer misses them - and how we look forward to taking them home when they are feeling better. The nurses seem to think they are more responsive than yesterday - and they did a fair amount of shifting, pushing and moving around....so, that was encouraging.

We'll be back tomorrow...

Back home - Nothing new to report

Alex and I are home now. We checked out from Providence this afternoon. After sending my Greer-sitting inlaws back home, we spent some time getting reaquainted with our boy. He was very happy to see us - and we couldn't wait to catch up with him. I think he knows that somthing is wrong. He only met Quinn once, but he recognizes that she's "sick".

We received a call from the hospital - saying that nothing new had happened. They also mentioned that they would be sending test material out to OHSU - to get some further analysis. Hopefully, we'll have some answers soon.

Very tired - as is Alex. After we got Greer down, we collapsed into bed and fell asleep to an old Star Trek episode. Since I forgot to put out the trash before I crashed, I had to deal with that when I woke around midnight - and now I'm up as a result. I'm writing - and feeling an empty pit in my stomach.

We've received much support and many prayers - and know that the girls are in God's hands.

Quinn in ICU

So...It's been quite a dramatic 24 hours for Alexis and I.

Since my last update, Quinn has joined Eleanor in the neo-natal ICU at Providence St. Vincent. For some unknown reason, they are both having problems feeding, staying conscious and are largely unresponsive to outside stimuli. Tests have been run for infection, bacteria, etc - and everything has come back normal or negative. While this is good news, the doctors are still at a loss to explain what is wrong. At this point, they think it might be a metabolic problem that both of them share, but they still running more tests to find out.

Obviously, we are very distraught - and ask for your continued prayers and support during this difficult time.

Eleanor in ICU

On my way back to the hospital (with Greer and in-laws in tow), Alex called to let me know that the nurses had taken Eleanor to the neo-natal ICU with a possible infection. Apparently, Eleanor was not getting enough oxygen in her blood - which caused her to have problems staying awake during feedings, etc. After arriving, Duncan and I went to visit Eleanor in the ICU and speak with the doctors about what to expect next. In response to possible infections, they have her on antibiotics and a ventiator to aid her oxygen intake. They have also been running a battery of tests to check for infection, etc. The doctor expects to have her in the ICU for up to a week - and Alex and I will most likely stay until Monday to make sure Quinn doesn't have any similar problems. As of now, Quinn is plugging along - eating well and responding quickly to outside stimuli like a healthy baby. So...we can be thankful for that.

That's the latest for now...

Thanks for your continued prayers and support.

Day Three at Providence

Things are headed down the home stretch on this end. We will probably be staying the night again tonight - due to some feeding and jaundice issues with Eleanor. She has been sleeping most of the time and taking it easy. Quinn is doing swimmingly - outeating her sister and generally being more lively. Currently, both are feeding with mom and attempting to adhere a schedule of sorts. Later today, I'll be bringing Greer and family back to the hospital for their first visit.

Hopefully, we'll be headed home tomorrow!