Time

Time. Time moves on, so quickly. The days go by, and tomorrow I stare in the face of four months without the physical presence of Anna in my life. The dream that I keep waiting to wake up from becomes more of my reality, and it is scary, lonely, surreal, to navigate through life without her.

Many times I do not know what to do with myself. I keep busy, I love my work and it has been a wonderful distraction. I have put jogging back on the calendar. I make plans to keep me out of the house, which may explain the moving boxes still lining the downstairs of the new apartment. But I have to keep going. When I stop, it is difficult. To start again, I ask, "Is this what Anna would want for me?" Many times, I look at Gabe's face. I kiss his forehead. It bring me peace. I could only kiss Anna's forehead near the end because of the equipment and the tubes and the masks; they were all in the way. I feel his forehead and I close my eyes and it is the closest I am able to get to kissing her. They have the same soft skin. I look into his eyes and it is the closest I am able to get to looking into her eyes. They have the same shape, the same sparkle, their souls shine through. Pure. Wise. Deep.

We all talk about Anna. Sometimes the words are saturated with sadness. Other times, full of hearty laughter as we share a favorite memory. A roller coaster. I long for her, always. Longing. It adequately describes my feelings for her. I long for her touch. I love her. I cannot have her.

This week, we bought a real Christmas tree; the house is filled with pine. It is a lovely thing to come home to. Gabe also asked for a mini-tree for his room. He decorated it with mini-lights, his special ornaments, and placed it beside the picture he has of him and Anna on his shelf. Next to the Franciscan cross. Next to the Snow White figurine because that was the first princess movie they enjoyed together. On the other side of that is the Nativity he built and put up on his own this year without any help from mom or dad.

On Gabe's tree, I found he had placed one of Anna's ornaments in the center. The Arielle ornament, from the Little Mermaid. He picked it because, at the end, the Little Mermaid had superseded Beauty and the Beast as her favorite movie. She loved Prince Eric, and when we would tease her about it, she would laugh and giggle. A little crush on the prince, I would say, and she would give me that famous smile.

A few weeks ago, on Nov. 8th, Manny and I co-chaired the 4th Annual Reverse Rett Gala in New York City. If you ask me why we stuck with it, I will tell you: staying home and away from it would have been more difficult than attending. There is a double loss I have suffered. The first and foremost, my daughter. The second has been the loss of our daily support system and life as we knew it.

Caretakers who took such wonderful care of not only Anna but our family (and me) are no longer there, filling my house with their love. While we stay in touch, it will never be the same. I do not come home to Anna, or Taryn, or Ruby, or Lilia. Lord how I miss them. Their presence. Their love. The laughter. The joy. The friendship. 

Doctors who became extended family we do not see like we used to. The texts, the e-mails, the calls, the shared concerns; they helped us carry the Cross. I want to see them. In my crazy mind, I want to load up the wheelchair and pack the heavy diaper bag and I want to drive to Montefiore and head to the fourth floor and see them. I even want to sign in to the registrants desk and pay the co-pay. Just to see them. The routine of it all. What had become normal. I feel displaced. Dropped into a life that the rest of the world seemingly lives. Work, eat, sleep, exercise, pray, play. No Rett Syndrome and all that comes with it? Is this what this is? Normal? I am so not used to this. 

The Rett community. Especially Monica, Rachel, Erika, Jeff and Sara, Kristy and Roger, the GP2C friends. We are forever bonded. We will move beyond Rett world. But we will not move beyond our friends and extended family. It does not serve us well to do that.

A month or so before the gala, Monica asked if I would speak. After a few days of thinking about what I would say, I said yes. Below are two videos. The first is the video shown at the gala. There is a beautiful, touching tribute to our Anna at the end. I tend to think my technical skills are pretty good, but I could not figure out how to download the video from RSRT and upload it to Blogger. Below is the link.

RSRT's Video Shown in LA, NYC, and London

The second video is for our friends and family who could not be at the gala. Forgive the shakes, our dear buddy Hannah recorded it via iPhone. Apologies it has taken almost a month for me to get this together. Revisiting it is difficult. 

Reflecting

"Who's going to go apple picking with us? Who's going to go hiking with us? Go on trips with us? North Carolina to the beach with us? Just, who will do anything with us?

I don't feel so good about being a family of three."

These words were spoken by Gabriel, Anna's big brother, today. And they are so simple, yet so resonating.

This picture was from August 2nd. We were taking on the beach in style; Anna would have it no other way.

She died 34 days after this photo was taken, on Sept. 5th.

I look at this photo, and if you had asked me before this whole damn thing happened, I would tell you that this girl could fight through anything. She had a spunk, a laugh, a personality those who had the honor of knowing her will never forget. A sign hung in her bedroom, "Little girl, Big attitude."

On my heart, a little girl, who many might say could not beat Rett Syndrome, or many who would say did beat Rett Syndrome, by freeing herself from the body which kept her prisoner.

The last blog post I wrote was Aug. 7th, 2011. I quit blogging for a few reasons. What had begun as a fun diary to capture all of Gabe's tender toddler moments and announce the news of the baby-in-the-making's arrival (Anna was 4-months in the belly at the beginning), it evolved from less fun G-fam moments to a journal on Rett Syndrome and what it had taken from our lives.

A few posts, I found myself in a pity party, woe is me, what did I do so wrong in my life to deserve this...

Talk about a God who makes all things new: on the way to the burial, following the most beautiful funeral Mass, (where Anna let me know her presence and prayed me through), I said to Manny, "Why me? What did I do so good in my life to deserve the honor of being her Mommy?"

Anna never spoke a word verbally in her young life, and yet the lives of those she touched I resolve is in the thousands. And I know the purpose of her dear life has all been revealed to her, that her suffering was not for nothing, and that she has an eternity to spend no longer trapped in a shell, a broken body that never worked the way that it should have.

On a tranquil level, I rejoice in the peace she feels, that she lets me know throughout moments in the day: Mommy, I am happy. And I am still with you.

On an entirely ridiculous and illogical level: I would give anything to have her back.

But I know she would give anything to not be back here, on this Earth full of pain and suffering, trapped and unsure of just how bad the retching episodes would be when she went to bed at night, or how sleepy and tired she would be on any given day, struggling and coughing and going everywhere with that damn suction machine.

I want to forget the last three weeks in the PICU. I want to forget the agonizing moments of the tube down her throat, the coughing over the machine and the broken blood vessels on her precious face from the pressure. I want to forget the anxiety, and the seizures, and the sounds of the machines. I want to forget the gagging, the retching, the smell of the new formula we weren't even sure was going to work. I want to forget the withdrawals, the whimpering and crying under the bipap, the blood in her mouth from the pressure of the machines breathing for her. I want to forget the look of her small body constantly shaking, the violent episodes when her body would twist in scary angles and push her against the bed, the EEGs and the unexplained movement disorder. I want to forget the anxiety over every blood gas check, the hopelessness when on a high pressure nasal canula her stats looked amazing and she looked at peace and then we found the CO2 rising higher and higher. I want to forget the looks of the doctors faces when we left the child life room with Gabriel and walked him into his sister's hospital room for him to say goodbye for one last time. I want to forget the inevitable wait. And I want to forget the nurse asking me, "Do you want to hold her Mommy?" and as I said yes, I put her in the position I always held her in to keep her calm, the one that looks like this:

And as we prayed her into Heaven, her head became heavier and heavier, against my shoulder, and all I could think of was how I was going to have to wait the rest of my life before seeing her again, touching her, pinching her cute little thighs that we finally managed to chunk up, kissing her beautiful cheeks, smelling and twirling her beautiful soft curly hair, and realizing my life would be left with an inexplainable void and unimaginable sorrow over the loss of my daughter.

There were so many good memories, but for some reason the last three weeks of her life are overbearing and mostly what I think of when I think of her. I try my best to push them away, yet they remain. I can't wait for the day to come when those three weeks are a distant distant distant distant memory, and what I do remember is all of the good, the fun, the precious, the love-filled times we shared.

Keeping Up

Anna received her 100% cardboard Adaptive Design chair we told you about a few posts ago...

It can hold up to 2,000 pounds! Thankfully Anna's only around the 20 pound mark. 

Gabe is growing like a weed! He went from size 5's to 7's in 2 months. 

His waist is itty bitty and his legs are long and lean.

All summer long, we've kept the local grocers on their ordering toes with the ONE brand of baby food that has the ONE flavor Anna will eat.

Anna got her first major haircut at the beginning of summer. She laughed the whole time.

Gabe graduated from kindergarten! We are so proud of him.

He also turned 6 on June 22 and Anna turned 3 on July 25.

Birthdays... sigh.

As for me and the Manny, I think everyone knows this by now but I started a new job. I'm a full-timer now and the adjustment has been a big one for everyone. We are happy but busy and all still adjusting I think. "Change" has been a big theme in our lives this summer: I went to work full-time, Gabe graduated kindergarten and baseball ended, Manny is now on 2 shows until December - The View and The Jeremy Kyle Show which we are so grateful for and proud of him, and Anna starts school in September. With everything happening all at once, we are doing our best to keep up. 

Today at Mass the readings were so applicable to our lives:

1st Reading, 1 Kgs 19:9a, 11-13a

At the mountain of God, Horeb,
Elijah came to a cave where he took shelter.
Then the LORD said to him,
“Go outside and stand on the mountain before the LORD;
the LORD will be passing by.”
A strong and heavy wind was rending the mountains
and crushing rocks before the LORD—
but the LORD was not in the wind.
After the wind there was an earthquake—
but the LORD was not in the earthquake.
After the earthquake there was fire—
but the LORD was not in the fire.
After the fire there was a tiny whispering sound.
When he heard this,
Elijah hid his face in his cloak
and went and stood at the entrance of the cave.

Gospel, Mt 14:22-33

After he had fed the people, Jesus made the disciples get into a boat

and precede him to the other side,

while he dismissed the crowds.

After doing so, he went up on the mountain by himself to pray.

When it was evening he was there alone.

Meanwhile the boat, already a few miles offshore,

was being tossed about by the waves, for the wind was against it.

During the fourth watch of the night,

he came toward them walking on the sea.

When the disciples saw him walking on the sea they were terrified.

“It is a ghost,” they said, and they cried out in fear.

At once Jesus spoke to them, “Take courage, it is I; do not be afraid.”

Peter said to him in reply,

“Lord, if it is you, command me to come to you on the water.”

He said, “Come.”

Peter got out of the boat and began to walk on the water toward Jesus.

But when he saw how strong the wind was he became frightened;

and, beginning to sink, he cried out, “Lord, save me!”

Immediately Jesus stretched out his hand and caught Peter,

and said to him, “O you of little faith, why did you doubt?”

After they got into the boat, the wind died down.

Those who were in the boat did him homage, saying,

“Truly, you are the Son of God.” 

The whole time I kept thinking, no matter how much storm is out there, no matter how much chaos is in our lives, we won't find Jesus there. We can leave that behind and find Him in the calm... Like on our newly established "Sundays-are-only-for-family-days." And as I constantly wonder and worry about how everyone is adjusting to me being gone from home (particularly ME!) from 8 in the morning until 7 at night, I realize how important my faith is and to never doubt. So, while "change" has been a theme, "providential" has been most of our circumstances. God-sequences, perhaps. 

I haven't had a lot of time to keep up with my Rett family and I am sad about that, but I know once everyone is adjusted here, I can be better at staying in touch with the everyday. But I pray for all of you - you know who you are - every night.

Here's to not waiting 2 months for another blog post.

Although, if you people were better at commenting, I'd be more inclined!

:)

xoxo

Good Job Little Leaguers

Gabe had his last baseball game of the season. The team signed their names on baseballs and each player took one home. It made for an awesome keepsake and a good time. 

All-Star

Gabe's had an awesome baseball season!

The games and practices have kept us on our toes but the amount of improvement he and the team have made is incredible. It's been a great season.

And I think he looks so cute in his uniform...

Here's a little clip of Gabe and Daddy being goofs after one of his games:

The Return...

This past month has been cray-cray brosephs!

Alas... highlights of the past 5 weeks in photos:

Palm Sunday Easter Egg Hunt that followed our favorite Sunday of every month, the monthly Special Needs Mass at Holy Trinity, Whitestone:

(In true big brother fashion, Gabe made it his mission to get enough for Anna Banana, too.)

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The Easter Bunny came:

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Dental Check-Up For the Kiddos...

NO CAVITIES.

Congrats, Gabe & Anna!

You two were Champs!

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Princess Anna:

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Working hard in her therapies:

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I cleaned the windows!

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I also traveled to D.C. for a work trip and met up with the a-may-zing Colleen & Amy.

And for the record: Ryan is not wearing lipstick.

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On Mother's Day, Manny and the kids made me breakfast in bed, we went to Mass, then took off for a day of hiking at Rockefeller State Park. Photos from the day are around here somewhere...

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Manny worked hard and picked up lots of television work, and when he wasn't in a studio he was prepping for DAREoke and upping his running game:

More to follow....

Happy Mama's Day!

We were looking through old videos this morning and this one was perfect to find and re-watch after a few years on Mother's Day. So much has happened the past three years that it really is crazy to look back at where we were here. I told a friend recently that trying to summarize our past three years for someone is like re-telling The Odyssey in 3 minutes or less.