These visits

When we left Ohio, with our four-week old baby Gabe strapped in his carseat, I don't think I fully comprehended what it meant then when Manny and I drove away. The thought of leaving home forever was too much for me to ever really take in. Instead, at that moment in our lives, we could really only take one day at a time. So, that morning, we packed up his black Jeep Cherokee Sport, and only looked forward to the road within view. 

Since our journey went from, what essentially became stop overs in Florida and New Jersey before we found our feet, and subsequent footing, in New York City, we have cherished our time with our family, knowing it is never for more than a moment. Knowing it is one day at a time.

This past weekend, my mom and our niece Josie came to our home in Brooklyn. It's interesting, for me, writing this out now, because there has been such a break from actually documenting these moments beyond a Facebook or Instagram post. 

How many more of these visits, these special moments, should I have written, for Gabe's sake, for mine, to be able to look back? I guess my resolution with that is that it's neither here nor there. What matters is the now. 

Simon Says... Josie is in charge

Josie, six years old, blonde hair and blue eyes, is a BossLady, and I love her for it. The girl knows what she wants, and isn't afraid to say it. Hearing her somewhat raspy, little girl voice, fill the apartment is so special for us. With her "Uncle Manny!"'s and "Aunt Stefanie...."'s and "Gabriel"'s, they fill our days and our hearts. 

Gabe also plays along beautifully, with that big brother gene that was there for Anna and is still there for JoJo. 

On Friday, after a long week of work for everyone, we feasted on Italian at the house, had the perfect wine pairings, and sat outside listening to music and catching up.

Saturday morning, Josie and I went to the park and took the pup Ruby for a walk while everyone slowly woke up. At the playground, I showed Josie how to do burpees and air squats (she wasn't totally impressed) and we counted jumping jacks and push ups before moving on and conquering monkey bars and swings.

Josie's first tea party

Later, we headed to Alice's Tea Cup, where Josie wore fairy wings and was sprinkled with fairy dust. The food and tea were, as always, incredible, and then we had to work some of it off. We headed to a park just over the Queensboro in our old neighborhood. Watching Gabe take on the playground as a 12-year old was quite alarming for me as I recalled bringing him there as a toddler. It is amazing how fast - yet how slow - time goes.

Brain games and box-making with Uncle Manny.

This weekend, it was beautiful to watch Uncle Manny be, well, such a good uncle, playing Simon Says, and Red Light, Green Light, and Hide and Go Seek, as Josie pulled the back of his shirt and he acted like he didn't know she was behind him, while he looked in every area of the backyard, her laugh loud and giddy. It makes me love him that much more.

Our Memee and the Gabester

We then visited St. John's Cemetery, leaving pink roses on Anna's grave, silently praying, reflecting, loving, our little girl and commemorating her birthday.

We hit four different playgrounds this weekend

The ride home was uneventful - mom saw the new Kosciuszko Bridge and the old ones demolition, which, kudos Cuomo, is moving fast - and then we made delicious turkey burgers (thanks, NY Times Cooking!) and hot dogs on the grill, paired with salad and what ended up being the best guacamole in the history of guac. No, seriously, the recipe is called "Best Guacamole Ever" and it is for real. We skipped the serrano chile and halved the onion, and the entire bowl was scooped up, either by tortilla chips or spoons, adding it to the turkey burgers. Highly likely this meal will be repeated in the future before summer's end.

Later, it was another night of sitting outside, playing music sprinkled with dancing, and catching up, sharing stories and laughing out loud.

This morning, Sunday, we saw them off.

When it's time to say goodbye, that little ball crawls up into my throat, and I push it back down. Taking it one day at a time, and appreciating these days and moments with family for all that they are.

Now it's off to meal prepping for the week... And maybe a stop by the beer garden for the first time this summer.

XOXO

Happy Birthday to you

Dear Anna,

Today is your 9th birthday. 

I remember that day like it was yesterday. 

It was a Friday, that July 25th of 2008. I had been feeling pretty good... But you were quiet. My pregnancy with you was very different than that of your brothers. Gabriel was a hurricane. He moved so purposely in my womb, kicked into my ribs, labored my breathing, danced at night, hiccuped during my college classes, and did somersaults after I ate grapefruit. He came out two weeks late, nine pounds and nine ounces, with sideburns and rugby shoulders, ready it seemed to eat medium rare steak (which he does, now, at 12). 

You were a little ballerina, with quiet flutters and barely a disturbance. 

I was being seen weekly by Dr. Roshan at this point, who had found out after the three babies we lost before you that I had Factor V Leiden, a weird blood clotting disorder I inherited that was causing miscarriages, but weirdly did not affect my pregnancy with Gabriel. I took Lovenox daily, and after I iced my hip (right, switch, left, switch, right, each night) your dad would stick me because I couldn't bare to do it myself. 

You were 35 weeks 5 days, and my appointment was at 11 a.m. I hadn't eaten breakfast because I wasn't really that hungry, and had planned to go with your dad and Gabe, aged 25 and three at the time, to a great Thai place around the corner from the doctors for lunch after our sonogram, and then we were going to pick out and purchase baby furniture for your room. 

You had been quiet, but it was always the case with you. I liked to think that you appreciated your sleep. We joked that Gabe took after me, and you, after your dad. 

As Daddy and Gabe waited in the room for the sonogram, I was outside it, hooked up in a chair to a fetal monitor. The nurse, Jeanette, asked me if I had felt you moving that day. I honestly hadn't felt a difference. She looked concerned, but I could tell she did not want to startle me. She took me into the room with the sonogram machine and big flat screen television. The technician came in and took measurements, then shook my belly around a bit. I thought they were just trying to wake you up. 

Daddy and Gabe looked on, and Gabe took great joy in pointing out your "baby hair" and your "baby nose" on the television screen.

Then the doctor. 

Dr. Roshan did his own measurements, his own listening, his own prodding. 

"Go to the hospital. Do not walk. Take a cab. You are having this baby today."

You were born via emergency c-section within three hours. 

You were so tiny. Four pounds 15 ounces. I had never seen such a little human before. 

They whisked you away to NICU. You hadn't grown in four weeks, you were in fetal distress, the placenta was full of clots. But you made it. 

That Sunday, Dr. Roshan came to my hospital room. He knew you were in NICU but seemed thankful. "Had you not come to the appointment on Friday, you would have delivered a stillbirth on Monday. She's in NICU now, but she will be fine." 

You were there for three weeks. I spent every waking moment there. I pumped and froze so much breast milk that your dad had to go buy a deep freezer from Costco, which we would later sell off Craigslist, to another new dad with too much of his own wife's breast milk to handle. 

You brought us so much joy. 

Today, it was a choice to not be sad and gloomy. I wanted to be. I wanted to kinda throw myself a tantrum, talk about how unfair it is that you aren't here, but it doesn't make much sense. I can't help but think that you don't have something to do with that. 

On Facebook today and/or through texts, every single one of your grandparents shared photos of their cupcakes, honoring you and your memory. 

Cupcakes were your thing, for every birthday, even when it became too difficult for you to eat. Even when the doctors said not to give you anything by mouth anymore, instructed us that we should give you everything through your feeding tube, and on your fourth birthday I looked at you and said "we'll cheat this once, okay?" and you laughed because you knew what I was getting at, and I gave you a little icing off of my finger and you sucked the sugar off and you loved it. 

"Cupcake" was  your nickname, which Taryn called you all the time, as she brought you out of the bath and into your room, or from your room to the living room, and we would hear, "come on now, Cupcake." 

Or the necklace of yours that I still have, which hangs with my jewelry, featuring every color of the rainbow and then some, and in the center of the colored beads hangs a cupcake, because why not? 

Cupcake. 

Tonight after a long day, I felt my phone buzz. It was an email. From your best friend Jacob's mom. Jacob, who had his own special disabilities, who took wonderful care of you. Who played with you and who didn't speak either, but who understood you and who you also understood. His mom didn't know it was your birthday, but she wrote me, responding to correspondence of mine from November 2012, just under three months since you had passed on from this life to the next. 

She told me she suspects you and Jacob play in his dreams. That she was thinking of us. 

A card she wrote to me not long after we lost you is framed downstairs, and I see it everyday before I leave the house: 

"What we have once enjoyed, we can never lose. All that we love deeply becomes a part of us." - Helen Keller 

Maybe that's why I chose to love and find joy in your life today. Because I love(d) you. I enjoy(ed) you. I can never lose you. Because I love(d) you so deeply, you are a part of me. 

I love you.

Love, 

Mom 

Hello, Old Friend

There have not been many times I have come back to this site to write. Not since Anna died.

On the other hand, there are many times I've written an entry in my head, with the words of what I want to say laid out perfectly, the ideas captured, the themes there, the sentiments expressed, and then, time would be replaced with "not writing" and they would all fade... Out of my mind but restless on my heart.

There were three main reasons I quit this.

One, the obvious. A deep, dark depression and complete turmoil in a world turned upside down after the death of my child. Followed by another trauma. And then another. Covered by a facade that all was merry and bright. And then devoting time to pulling myself out of the wreckage, emerging miraculously with Manny's hand in mine, and my hand in Manny's.

Two, a story shared once by accident, and as the words tumbled out of their mouth, I could tell they so desperately wanted to take those words back, as they laughed, but saw that I wasn't. An entry from long ago, about self-improvement, my desire to lose weight, to stop smoking, to be better, amidst our crazy - truly crazy - life at the time. And the story, about how one person read it, and then called another, this storyteller over, to laugh at it, here she goes again, another entry about how "this is the day" she will lose weight, she will quit smoking, she will...

I did not deserve that.

However, I have learned a few things along the way since. And to save those enlightenments for blogs to come, I will say simply: I have been smoke-free for a Very. Long. Time. (And Manny, I need to share, has been smoke-free for 2 years-plus as of this past July 4th.) I have also lost 30 pounds. Collectively, Manny and I have lost 50 since that time of that entry and that storyteller laughed about our lives.

Of course, I now ramp up again to lose more. But I know - I know this time - that it will take me a thousand tries. And that's okay with me. It's better than not trying at all.

I will also say this: I have run three half-marathons, and I am not a runner. I am slow, but I am steady, and I did it. So, I guess by all accounts, that makes me a runner. God does have a sense of humor.

Laugh away.

Three, someone important to me was inadvertently hurt, many years ago. It wasn't something that was said or written. It was something that never was. They were a faithful reader, a loud cheerleader, and felt overlooked. For a long time, I wanted to explain to them that it was completely unintentional.

I promise now I am a better friend. But I also know I was best a friend I could be at the time. Which is not an excuse. But it is the truth. Someone wrote an essay out there once about how special needs parents are the worst friends. It's true. I needed a lot of love back then. I needed more love than I knew. But I also know I am sorry.

With this all here, laid bare, I begin again. And who knows, it may take me a thousand tries, but I will do my best to reclaim "This Stefanie Matters" because, after a lot of soul searching, I have found... She does.

Reflecting.

Is this a waste of my time?

To write of the days leading up to the night that Anna died? 

Should I just walk away from this and be content with the spiritual understanding that she is at peace? That she was a really sick little girl and was ready to die? That she is our Saint who prays for Manny, Gabriel and me and is with us everyday? That this was the best resolution for her? 

Maybe I need to quit crying and actually sleep a full night and just accept that Anna is physically dead  and spiritually alive. I should be happy she no longer suffers. Right? I wish it were so easy. I cannot do it.

Because there is my heartache. I am in awe that despite of my heart's brokenness, it continues to beat. That as my chest tightens and the pain becomes almost intolerable, my mind takes over for what my body cannot continue to sanely bare and I talk myself through what has become my new normal. These moments strike throughout my days and nights more often than I would like to admit. 

I have spent the last eleven months looking forward. Reflecting back on what had happened was entirely too intense for me to fully let in, if I, at the same time, expected myself to function in everyday life.

Until recently, when my internal time clock sounded the alarm, snapped my head around and forced me to remember the last weeks of her life. I was not ready for the sleeplessness, the nightmares, the flashbacks, the tears, the pain, or the loneliness that this would bring. Desolation is not strong enough a word. And worse yet, there is no compartmentalizing these feelings. They are raw and in my face.

During the past week, I have hung in a delicate balance. I am aware that I have not chosen this. And that sometimes it is worse.

With every sleepless hour which has passed, I chronicled the painful memories. Read on if you will, but please, and kindly I ask this, do not exploit this experience to drum up donations for Rett Syndrome.  

On August 14th last year, Anna was admitted to the hospital for what seemed to be another aspiration pneumonia. We were scheduled to leave on a family trip to Florida on August 18th, and I had high hopes she would be discharged by the 17th. Manny spent the night with her that first night; after they had settled into the room, I went home to pack my bag for a few days stay and sleep in my bed for a few hours while Daddy held down the fort. I arrived early afternoon on the 15th, and Manny reported that she had been up laughing most of the night, into the wee hours of the morning. Nurses who knew Anna from previous stays asked if she really needed to be there. It was cute and comical that she had such a little fan club. But then, she fell asleep. And her sleep became deeper and deeper. Mid-morning, she quit breathing, and Manny had to perform CPR. After a few quick puffs, it seemed to "reset" her. She started breathing on her own again. The Pediatric Intensive Care Unit was called in due to her increasing unresponsiveness.

They scheduled an emergency CAT scan, thinking she may have had a stroke. Or something else. I remember running next to the stretcher as they loaded her lifeless body into the elevator. And then it happened. A third-year resident ran over to the attending physician and handed her a piece of paper. It showed the results of Anna's blood gases. Her eyes widened. Within seconds, the doctors pulled the stretcher out of the elevator and ran Anna into the hospital room and started breathing for her. We saw her little chest going up, down, up, down. It was at that moment I looked at Manny and I said, "We are not leaving this hospital with her." He rightly shushed me. I said it differently this time. Tears welling, "Manny, the Blessed Mother is at the foot of that hospital bed, and she has asked me to prepare to walk the road to Calvary." I don't remember what he said. 

As Anna's levels somewhat normalized for a moment, she looked at us and the attending asked her, "Anna do you see Mommy and Daddy?" Anna looked right at the two of us, and smiled that beautiful smile, and laughed. They cancelled the CAT scan. But it was the last time we would hear her laugh. 

Once we were moved into the PICU, I will never forget the attending physician who tried over and over with different breathing machines to get Anna's CO2 levels down, but to no avail. The decision was made to intubate. Manny and I were escorted out of the room and told to wait. Different details emerge for me. The paralysis medication. The sedation. The arterial line. The filters that would have to be changed. The gagging. The suctioning. The coughing. The tears. The beeping. The complete lack of control over what was happening as the days went by. Some doctors understanding my abrasiveness, but most of them not. Most days I felt like I was losing my mind and all I could do was try to keep her calm by talking her through everything and announcing every visitor. Her anxiety, rightly so, was at an all time high, and the seizures... 

This is an update I shared during this time:

August 22nd:

Today marks one week Anna has been intubated on the ventilator. It has been a tumultuous time with many ups and downs too long to detail. In summary, there have been seizures, desaturations, resuscitation, a collapsed left lung, a PICC line placement and a bronchoscopy, due to a double aspiration/chemical pneumonia. We learned today that what seems to have precipitated this is a viral induced suppression of bone marrow that left her unable to defend her little body against the pneumonia. We now wait for her lungs to clear and her body to heal to see when we can begin the process of bringing her off the vent and breathing again on her own.

I finally feel confident to say we have turned a corner, as she was more peaceful today and rested with less desaturation episodes and has started working to bring secretions up on her own. She is still very much our Anna Banana, as she showed today when the nurse was giving her extra breaths through the tube and she bit it with her teeth to show her she was not happy with that. It took some prodding, and she gave me a little smile as she let go and went back to sleep. Talking to her brings much peace and calms her, and while I have felt helpless much of the time, the one thing that brings me comfort is seeing her relax when she hears my voice.

Two days later, the attending, who I know I drove beyond crazy but respected, made the decision to wean her off the ventilator and transfer to bi-pap. I could not have been happier.  

But then:

August 24th:

Anna's keeping the nurses on their toes tonight. Blood gases so far look good, but lots of secretions and some uncomfortable withdrawals from sedation. As I look at her before I change into my pj's and make my bed, I remember something I once read: "Some people spend their lifetime looking up to their hero. The truth is, I gave birth to mine."

August 29th:

Anna Banana update, Day 16: her withdrawals (from sedation) have subsided and she is more comfortable now, she is currently stabile on bipap and tolerating new formula through j-tube, and her chest x-rays look better everyday. However (and I live for the day there is no "however"), every time doctors start to wean her off bipap, her CO2 levels rise. I cannot stress enough how much we want and need her to come off bipap and breathe on her own again. Once this is accomplished, we can get through the list of tests and studies that need done so there is a workable plan in place for her care and we can bring her home. We are surrounded by our supportive family and wonderful friends, thank you for all of your prayers and well-wishes. Please keep them coming. 

On the evening of August 30th, after days of watching her tremor and seize, and the doctors doing as much as they possibly could for Anna, I asked the nurse if I could crawl into bed with her. She helped me with all of the tubes and I sat Anna in my lap for the first time since we had been admitted. I thought maybe, just maybe, this would bring her some peace. It did not have the intended result, and I was crushed.

Later, in the wee hours of the morning, neither of us could sleep and she was crying. I held her again, this time on the side of the bed in a chair, with the bipap blowing at the highest setting and her poor body looking more beat up by the day, and we had a conversation. I whispered in her ear, "Anna, please do not be mad at me for saying this. But if you are ready to go, I need you to know that you do not have to stay for Mommy and Daddy. If you are ready to go, it is okay." She opened her eyes and looked deep into mine and she let me know. She was ready. I tucked her back into her hospital bed, and I cried for hours. I remember texting Manny's mom, Ilsa, who had flown up from Florida to help, sharing with her that I felt God had forsaken us. I asked her to come to the hospital as early as she could, because I did not want to be alone. I knew it was a matter of time. 

And then:

Sept. 1st:

We had a few hours off the bipap today and were on a high-pressure nasal canula to see how Anna did. She maintained all her stats and relaxed a bit. Unfortunately, when they did a blood gas check tonight, her CO2 was through the roof, and we are back on bipap. The setbacks are getting old. We need good news. 

That evening, Ilsa stayed with Anna for a few hours and Manny and I went to dinner to have a conversation. We made the decision in a moment of non-crisis - the time would come they would need to reintubate, as she was no longer responding to bipap or anything else, and we needed to know what our answer would be. We made it together. And then we cried. 

Sunday and Monday of Labor Day weekend were a blur. Anna was less and less present, and I prayed the first day of a Novena to St. Therese of Lisieux. I asked her that Jesus' will be done. If Anna were to get better, she needed to get better. If her time on Earth was over, then it needed to be over. I could no longer watch her hang in the balance. 

Three hours later, I woke up to the third-year resident who knew us and Anna by now talking to the nurse. I heard the words "we have to reintubate" and I sprung up. I began shaking uncontrollably. The time had come. I asked the doctor into the family room. It was around three or four in the morning of September 4th. I asked her professional opinion and shared that Dad and I had agreed. We did not wish to reintubate. It was time to let her go. It was time for us to give her peace. Little did I realize that my suffering had really just begun. 

I called Manny. He was there by 5 a.m. The doctors slowly came in. She was failing. 

As serious and painful conversations took place, I moved through the hours in a daze. Barely comprehending what was happening yet never more sure of a decision. Doctors who became extended family spent time with us, and Anna. 

And then Moses. 

Moses was Anna's nurse the first day she was in PICU. A gentle man, but strong. Moses was Anna's nurse the last day she would be in PICU. As I looked over her bedside, and touched her and spoke softly to her, he said to me, "You are my hero." I was confused. He went on, "The decision you are making for her is just that - for her. So many times I see parents make decisions for themselves that only buys time and prolongs suffering. You are my hero for doing this for her."

His words will forever stay with me. He was meant to be there that day. 

As medical records were written and papers were signed, the bipap was removed. We replaced it with a much less invasive high pressure nasal canula, and we cleaned her up and put a pink flower in her hair. I had told her from Day One in the hospital that when she was feeling better I would paint her nails a pretty pink. I knew it was my last chance to paint those perfect nails, so I did. 

Gabriel came to the hospital, and with the help of child life specialists, we told him what was going to happen. He went in to say goodbye. She did not open her eyes for many that day, but she opened her eyes for him. She knew exactly what was happening, and she was at peace. She smiled at him, and he told her he loved her. Then he went home.

Grandparents drove in, and we all prayed they beat the clock. They did. And as the hours went by, people in our closest circle came to say goodbye, and she slowly left us. By 11 p.m., we knew she would not make it through the night, and we all kept vigil around her bed. At one point, the nurse asked me if I wanted to hold her. I was so afraid of disturbing her all day that I just sat next to her and held her hand. But yes, I wanted to hold her. She gave her to me, and we all prayed her into Heaven. She passed at 1:22 a.m. on September 5th.

I left the hospital after giving her a kiss on the forehead. It was different this time. She was gone.

And I knew she was so happy to be done. It was over. In that moment of losing her, I cannot describe the emotion I experienced. It was almost as if I had seen the chariot come down from Heaven and take her up and dare I say I felt joy that her suffering was over. I know it was not for nothing. I know it had meaning. I do not know how I know. But I know. 

There is no denying that this has changed me, and that this has been the hardest chapter of my life. Thankfully the Lord has given Manny and I the best of friends and the most supportive family. We are beyond blessed to have one another and the support system of those around us. We know we are not alone, and that is a great gift. 

I can imagine that Anna is telling me I will be okay. To be patient. That she is with me. And to quit worrying so much. I must remember the peace that surrounded me the days after she died. To treasure the gift that she was. She was my missionary. 

I just miss her so much. The pain, it is still too much. I struggle with the question, Will the pain ever go away? And if it does not, how does one live their life with the pain? 

I do not know.

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