Missing Chloe

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A month before Chloe got sick

Chloe on the swing a few days before she became ill

A couple weeks into our PICU stay (out of coma)

This day will always feel raw.  It makes us come undone.  We wake feeling beaten. It is hard to take a breath.  I am always hit with the same questions - what if I had gone to the doctor one more time, what if we had gone to the ER sooner, what if I didn't stop to buy that pumpkin or take the long way home, what if it didn't turn out the way it did, what if this never happened?? And, the forever question of WHY??? So many questions, so much guilt, so many emotions before even turning over in bed to start the day.  With trauma, you push through it and cope and find ways to move forward - it never goes away... you live it, you wear it, you fight it, you learn from it.  Some days (weeks, months) are seamless but sometimes a moment takes your breath and it knocks you down. 

We miss Chloe being at home everyday.  It's harder on days when we have family moments and she is not there.  I fight that feeling that creeps into my heart - that I wish she were there with me, laughing and holding my hand.  I try to live in the moment and enjoy but sometimes her absence is very much felt.  I notice when Olivia and Jackson bicker (as siblings often do) that they miss the middle child as a buffer.  I often wonder how their dynamic would change if all three were together.  It feels empty when we wake to special days (like birthdays or holidays) and she is not immediately there.  She misses moments and we miss her.  It really is still raw some days. 

Still, she continues to amaze us and bring us joy when we are around her.  She giggles a lot more these days.  It's a little mischievous but we kinda enjoy it because you can tell she is being playful.  We visited her late one day, over the summer.  She was tired and ready for bed but we wanted to spend some time with her.  She was not having it and showed no interest.  We tried to take her for a walk, bring out her toys, talk to her - nothing worked.  As we started to say good bye, she began this playful game of 'if you kiss me, I will laugh' and so began our 20 minute good night kiss that we all truly enjoyed.  She is smart and gets us to linger when she does not want us to go.  And, she loves peek a boo and seeing faces up close.  It is clear that she recognizes familiar faces.  Chloe has never been one for toys; she has always been a people person and loves to look at faces.  She lights up when grandparents come and becomes light and playful.  With Olivia, she is at ease and lets her play with her hair.  The two girls cuddle or stare at each other and get lost.  Jackson is still trying to make sense of what she likes but has learned to proudly take her for walks on his own around her floor unit.  Brain injuries are so difficult and her seizures (though they are better) do not make this easier.  There were times that we thought she would never smile.  There were times that we would question if she were really seeing us and understanding that we were mommy and daddy.  Chloe's smile, as a baby, was EVERYTHING!!  She lit up the world with her smile and laugh. It is still difficult to look at her old pictures.  So now, when she giggles and shows her gummy smile, it eases my heart a bit and I can breathe a little easier knowing that she recognizes those who love her.   

It's been a long road!

Chloe continues to grow and is still doing well going to school off hospital grounds.  We want to take a minute to thank all of those who helped to support our fundraising for Chloe's new wheelchair.  It is amazing to see the difference.  She sits up high and strong in this new chair.  It is clear how much support it offers to her trunk and neck control.  As we went through initial fittings for the chair, I remember Chloe smiling and sitting straight.  It seemed to help her feel more confident and we were so happy to know that this would provide her with so much more stability and support.  We could not provide her this without your help and we are so thankful.

MUCH LOVE (with a big gummy smile)

Hi everyone! Wow! Two years without an update...

8 years have passed since Chloe got sick but her spirit grows stronger and spunkier as she gets older.  Two years ago we wrote to you about her seizures presenting problems.  Back then it seemed that her seizures had grown bigger and lasted longer than any other time we could remember.  They were causing her to shake, extend her limbs in a stiff manner, become irritable and cause her to cry from being frightened.  It scared us!  Therapists were concerned about her behavior and refusal to work, and teachers expressed concern of her alertness and willingness to participate.  This wasn't an easy time and we fought hard to make everyone see that this was not her usual self and begged them to keep going and NOT give up on her.  We have never walked away from a challenging time and we were determined to find her some peace so that she could shine and smile again with ease.

After some time, we decided to introduce the Ketogenic Diet again and increase her medicine. As she adjusted, we insisted that her therapy and school team work with us to make her comfortable and keep trying different ways to ease her.  Within weeks, we received a phone call sharing the positive strides in her demeanor and alertness.  Therapists were asking to extend her sessions and co treat again as a team so that Chloe would benefit from different disciplines simultaneously.  Follow up phone calls and visits to Chloe were met by staff members sharing stories about how she was behaving differently.   It seemed that Chloe started to track (follow) people's movement better with her eyes.  Stronger prescription glasses also helped her to focus and participate more.  She was attentive and involved with her surroundings.  She also enjoyed more cuddles and play time on the mat.  Even better, she was allowing her cochlear to be placed more and more and recently started turning to the sound of her name or to the sound of a familiar voice. Chloe has always been a people person and loves to interact so her ability to show and acknowledge that she recognizes you or your voice is a very proud moment for all of us.  The absolute best part of all this are the smiles and giggles she now shares.  More and more, we catch her staring and then suddenly opening her mouth to give us a big gummy smile like she did when she was a baby.  Suddenly, it seems as if she notices - her eyes grow big and her smile grows wide. Sometimes, we'll even get a giggle.  At times, her giggle has even grown to a full blown deep belly laugh and we just melt!

Another exciting step for Chloe is that she now attends an off site special needs public school.  A year or so ago, Chloe and her friends lost their school space on hospital grounds and have been receiving school instruction solely on their unit in the common area.  It was not ideal as it was a small, shared space and the children rarely left the floor.  With the encouragement and support of her social worker, we were able to file papers for her to attend a neighborhood school that would provide all necessary services for her.  Since September, she has been riding on a bus to her new school and enjoying 'normal' school life.  It is a bright and beautiful space with a small ratio of teachers to children.  Two full time nurses are available throughout the day so we know she is cared for and kept safe.  Chloe also takes advantage of recess and social time with her classmates during lunch.  Music, art and physical time are all a part of her day now on top of her regular grade instruction and therapies.  We are thrilled for her to have this school experience so that she can explore outside the hospital, socialize with new friends and interact with the world around her! 

Thank you everyone for being patient with updates.  Two years is a long gap but I feel that we have kept in touch with many of you through face to face interactions, phone calls and social media more.  It has become easier for us to talk about our experience and our day to day as we accept Chloe's illness as a part of our life.  For me, I know, this was one of the hardest obstacles. I struggle with introducing myself as a parent of three when one is clearly not visible. I question how to approach labeling her a severe special needs child.  I make myself very vulnerable to opinions and judgments when I share that we have chosen to place her in a long term facility.  I agonize, still, over the guilt we have for what could have been our life without illness.  These struggles are still very real but I've learned to not hide or cower away from the difficulties of these topics.  I have learned to accept my role as a parent of three beautiful child for whom I fight for in every possible way.  

These past couple years that we may have been absent from the blog world did not pass without growth.  All five of us have healed in many different ways.  At home, we respect that  each of us are at various stages of understanding and accepting a different kind of normal.  We realize that each of us has obstacles, and taking the time to really listen to each other this past year has really helped us to move forward as we question, advocate and support one another to heal.  It has been a time for us to be more open with each other about our feelings over what has happened and, more importantly, allow the kids to feel welcome in these conversations and help them make sense.  Life has adapted to new routines and different types of bumps in the road but we manage to get through it together.  Olivia and Jackson continue to visit Chloe often and love to read to her, play with flashlights and tactile games and take her for wheelchair laps around the unit floor.  They are quite a team of siblings.  They are forever in love with her and shower her with so much affection.

Thank you always for keeping in touch with us.  We continue to be humbled by all your acts of kindness and support. 

Much love,

Michelle and Rethier

Chloe's Day - October 8, 2015 - 6 years later

October 8, 2015

This week started with a flood of emotion in anticipation of today.  It’s funny how your body/brain remembers or senses such life changing events.  I woke up Monday morning missing Chloe terribly and felt sad and flashed through so many memories, good and bad, of her being healthy and sick.  After some time, I took a breath and pushed through as Reth and I talked about what to share with all of you and realized how well she has been doing this past year. 

Chloe has grown so tall and long recently.  It’s amazing to see her stretched out on her bed with her long legs.  Those who cared for her at the time of her illness will remember how chunky she was, but now she is long and lean.  She had lost a lot of weight earlier last year during these growth spurts but we are happy to say that she is back on track and gaining weight well.  Chloe has also been doing well with wearing her cute glasses (for her Strabismus) that make her look so sophisticated and smart.  Reth and I fought the idea of glasses for so long because we thought they would bother her but she enjoys wearing them and is SO much more aware of the people and objects around her.  Every therapist, nurse, and doctor is so happy with her attentiveness.  Chloe is also wearing her Cochlear Implant more and more!!  Therapists have worked so hard to place the implant and find different ways to make the magnet stick.  With some helpful braiding of her hair, the staff has learned to place it properly and Chloe has been more welcoming to the idea of someone touching her face and head to place these helpful tools.

Chloe continues to attend school at St. Mary’s.  Her teacher, Lori, is one of her best advocates!! We are so lucky to have her.  She is kind and genuinely cares for Chloe.  She has called on so many occasions to tell us about certain seizures and has fought Chloe’s staff to make them aware of the growing issue of her seizures and we are so thankful.  Reth and I have only witnessed a few of these bigger seizures and they are scary for us and for Chloe!  Lori had brought them to my attention initially so when I first saw one occur, I knew exactly what she had reported.  Chloe’s seizures are a difficult thing to report and observe as they can sometimes be so short and quick, or they can look like she is staring off, or they can be big, clumsy and scary.  Her teacher is with her most of the day and has really learned to watch for them.  Along with Chloe’s nursing staff who spend time with her in her room, we have been able to put together a picture of what issues need to be addressed. 

The biggest change this past 6 months has been placing Chloe back on the Ketogenic Diet to help with her seizure activity.  As bigger seizures began to emerge, we have been pushing to find other solutions to help her brain heal.  Unfortunately, we have exhausted most approved medications and need to find a solution that can be more long term.  We had tried the Ketogenic Diet once before without much success but Chloe was home at the time and I did not have a reliable nutritionist or nurse to help.  Both St. Mary’s and Cornell have excellent nutritionists that work very closely with each other and our neurology team.  So far, Chloe has tolerated the diet well and has shown some improvement.  She is more alert and aware since changing her formula and we have not heard as many reports of bigger seizures.  She continues to enjoy water therapy and exercising in the pool and has had several positive sessions with her PT 'walking' and bearing weight on her feet.  OT and Speech also report that she is more engaged and alert as she maintains stronger head control and is more cooperative during the activities.  Her whole team has worked hard and is very happy with the success thus far.

All in all, it has been a good year moving forward with Chloe.  We still juggle and struggle to find balance but we are finding peace everyday.  Reth and I are so happy to have her closer as it allows us more time to be together as a family.  Olivia and Jackson are so happy to be able to spend more time with Chloe and have also gotten to know more of her friend’s on the unit.  Olivia enjoys taking Chloe for walks around her floor unit by herself and whispering all her secrets to her sweet sister.  Chloe still looks at her in awe, just as she did when she was a baby.  Often times, Olivia will spend time laying her head next to Chloe and brushing her cheek or tickling her neck.  Jackson loves to kiss Chloe and still loves to poke her to get her to growl.  It is quite endearing!  He is very much aware that she is his older sister and asks to visit her more and more and has started to express how much he misses her when he does not see her. 

We are so thankful for all of you who keep up with us on this journey.  Thank you for your many kind thoughts and prayers. 

Much love,

Rethier, Michelle, Olivia, Chloe, and Jackson

Happy 6th Birthday Chloe!

 Chloe turns 6!

She’s grown so big this past year and has gone through so many changes and continues to amaze us.  Now that Chloe is closer to home, we have been able to visit her more often and not have the burden of travel or making overnight arrangements.  It has been a treat for us to be able to take a quick drive to kiss her goodnight or say a quick hello.  Olivia and Jackson have been able to have playdates with friends and family with Chloe and it has been a joy to watch the three of them together.  Jackson’s favorite thing recently has been trying to push Chloe’s wheelchair around the unit and taking her for a little walk.  Olivia is happy to hold Chloe’s hand and play with her (still) chubby cheeks.   

Though she is closer to our home, it is still difficult for us to be away from her.  Time has healed many pieces of our heartbreak but there are still moments that just simply take our breath away and we just miss our baby girl.  Starting the school year was difficult.  I so wanted my girls to have this opportunity to share a first day of school together and have them roaming through the same school halls.  And every time we drive through Chloe’s neighborhood, even just to run errands, I’m saddened a bit by Jackson calling out ‘Coco, see you soon. Love you.’ He calls to her very sweetly and it breaks my heart.  I am thankful for the love and bond that I am able to witness between the three of them.  The three are truly amazing with each other.  I only wish it could be the way we imagined – without sickness, without complication.

We love you Chloe.  Daddy and I miss you very much, especially today.  You are as beautiful and sweet as the day you were born.  We think of you so often.  When I close my eyes and think of you I remember a sunny, summer morning we played outside on grandma and grandpa’s back porch.  Daddy held you as we all played under the apple tree and you smiled so big and laughed so hard.  My wish for you today is that you remember that moment and hold onto it forever.  We’re there with you!

Happy Birthday baby girl!

Much love...

A new chapter... closer to home!!

Chloe's view

Chloe's new room

It has only been 36 hours since we received such wonderful news for our family. Chloe has been granted a long term bed at St. Mary’s in Bayside!  She is now only a quick 20 minutes away from our home. 

 “It was the longest of long shots but they made it happen.” This was the only way Chloe’s social worker at Sunshine could explain it. 

As many of you know, St. Mary’s was a part of our lives while Chloe lived at home.  She attended Early Intervention (EI) at their facility and where we placed Chloe for respite care when Reth and I needed a break.  Unfortunately, their EI funding was cut and we continued her care at home.  When we decided that long term care was best for Chloe and our family, we had hoped that St. Mary’s would have bed availability.  The waitlist was long but Chloe had been placed at the top on account of our commitment and involvement with their community.  Over the last couple years, St. Mary’s has gone under an amazing multi-million dollar renovation and built a magnificent, new rehab/hospital facility.  When their new doors opened, unfortunately, the decision was to close their admissions to long term needs and focus on short term rehabilitation.

We were upset to hear that we no longer had an option for a hospital closer to home.  However, Sunshine Children’s Home (initially a division of St. Mary’s) has been such a blessing and we were happy that Chloe was being loved and settling in well in Ossining.  We formed ties with the community in Westchester and were pleased with our decision.  Chloe has really grown over the past 2.5 years and they have brought peace to our lives.  We planned to make this work for as long as she needed to be there.  Our life at Chloe’s made sense – we made wonderful relationships with the staff at Sunshine both on a personal and professional level, we shared Mass with them during special times, Olivia had playdates with staff children, we learned to have wheelchair/bike/stroller races around the pond, Jackson showed off his first steps and words in the lobby area.  We also built a little life in Westchester with having our routine hotel stays, eating at our favorite pizza/pasta joint, shopping at the market or the Mall, spending time in Tarrytown, and finding special local family activities.  It worked and we made it as wonderful of an experience as we could BUT it was always so far from home.  It’s not just a quick little ride; we had to plan ahead with travel time, meals, naps, and play/visit time.

We made it work but always hoped we could make a better life, a better way to manage everything.  The phone call from St. Mary’s on Wednesday literally shook us and left both Reth and I speechless.  We would never have been able to get through any part of our journey without the many advocates we have met along the way.  Each person that has met or heard our story about Chloe and our family has helped us take another step in our healing process and we are humbled by everyone’s kindness and so appreciative of everyone’s efforts.  The admissions officers at St. Mary’s had kept Chloe’s name close to their hearts all this time without us even knowing and had been advocating to bring her closer to home even when the decision had been made to not offer any long term bed.  We found out that our Sunshine team has also been quietly, yet aggressively, advocating for Chloe to their colleagues at St. Mary’s.  The Admissions team ignored the rejections and kept bringing up our family needs.  When an opportunity came to overturn the initial decision and allow for a long term patient admission, Chloe was the first person on the list!! 

So, in the last day and a half, through much shock and excitement, we toured the newly built St. Mary’s hospital in Bayside, filed Chloe’s paperwork, packed up her Sunshine belongings and moved her into her new space.  It’s gorgeous and spacious and bright.  They have a state of the art rehab floor, therapy pool, new accessible playground with a little pond and mini golf (one of Olivia’s fave features).  Chloe’s room is big and overlooks the bay.  She shares her space with one other girl.  And, the hospital allows for us to stay bedside, if desired.  There is a big common area for Olivia and Jackson to play with their sister and enjoy activities and the outside pavilion is great for our family and friend gatherings. As we settled Chloe into her room, we met a lot of the staff and were reunited with some familiar faces who remember our baby girl from when she attended EI and respite care.  It was a great day and a beautiful beginning to this next step.

We will miss our Sunshine family.  Words cannot express our gratitude to them for their love and care of Chloe.  They gave her so much.  She was happy and calm there; she grew strong and gained independence.  She thrived and learned so many things.  I will miss them dearly.   I cannot thank them enough for the peace they brought to my family and me.  It has never been an easy decision to bring Chloe to long term care but Sunshine was inviting and always listened to our needs both for Chloe and for us as a family.  They maintained such a wonderful and respectful way with dealing with our family that I knew I was always mom no matter where she lay at night.  This part was ever so important to me.  I strive to be a good mother everyday and it’s a hard thing to be when your baby is not with you, so for that sentiment to stay with me and to know that I am still a part of her and her life was priceless. 

           

I know our move to St. Mary’s will be a great one and we are excited for new possibilities and adventures.  We look forward to being a part of another amazing community.  Olivia is thrilled to have her sister closer and we are excited to have Jackson learn about Chloe’s strength and beauty.  Thank you everyone for all your continued support, positive thoughts and prayers.  We invite you to come visit and see Chloe’s new home and be a part of her life.  Please let us know and we hope to see you soon.

Much love,

Michelle, Reth, Olivia, Chloe and Jackson

Chloe Day - October 8, 2013

It's been four years since Chloe suffered from bacterial meningitis.  This day four years ago never seems so far from my mind.  It stays close to me (to us) always.  The memory of it is so clear that I wish I could simply jump back in time to erase the horror and devastation.  I still wish I could have done something else, something more to help her.  We can't, so we continue to help her, advocate for her, and heal alongside her.

Today, we spent the day with Chloe at Sunshine to share some quiet family time and let the kids play and be together.  We decided not to bring Chloe home or take her out for the day but rather be with her where she is more comfortable - at 'Chloe's House' as her cousin, Taylor, has so fondly named it.  Reth and I spent a simple and lazy afternoon with all of them by the pond.  We ran races between Chloe's wheelchair, Jackson's stroller and Olivia's scooter.  They endured our countless attempts at taking photos.  We sat together on the rocking bench in the shade and simply enjoyed being together.  I was so anxious over what to do as a family since our tradition has been to take the girls to Central Park to play by the remote control boats.  Unfortunately, we have realized that Chloe is not so easy to transport with her wheelchair and is not so comfortable on long trips away from Sunshine.  I was so nervous that today wouldn't be special because we didn't make a plan but as I sat next to Reth and had the three of them near me, I felt at peace and, dare I say, normal.  It didn't feel like a different or special day, it felt like a normal day - an easy, laid back, fun day - and I was thankful.

Chloe has had a fairly calm year.  We have had easier appointments with her doctors with most sessions ending with a 'no change' comment.  Hearing this is bliss as we have been changing her medicine, feedings, sleep/play patterns, exercise, etc. over and over these past few years.  To have no change to our current plan means that we are all doing something right.  We bought Chloe a larger wheelchair a few months back.  She is more comfortable and supported in this chair and seems to interact more in group settings.  She still has seizures but they are more controlled, she continues to be on her feeding tube, she is more responsive and comfortable in her Sunshine surroundings, she continues to move and roll around, and can sit upright a bit more steadily in her new chair.  Her eyes are still weak but we will consider more surgery when the time is right, and her team still continues to work with her hearing aid.  Overall, Chloe is stable and continuing her hard work.

Our family continues to heal everyday.  Some days are still harder than others.  We all miss Chloe everyday and it still hurts.  That hole, that emptiness - it is always there.  We've had tons of happy and exciting moments as a family, some with Chloe by our side and some with her in our hearts and minds.  She is always with us, even when she is not, and that's okay.  It has been an adjustment to continue moving forward after taking her to Sunshine.  Olivia has made more sense of her illness and the devastation to her brain.  She doesn't ask so much about when Chloe will be coming home anymore as she understands more the severity of her case.  She has found much comfort in her new baby brother, Jackson, and always shares how thankful she is for a new baby in the house.  Of course she misses her sister, she is still sometimes lost and sad without her best friend and roommate but she is healing.  Jackson has visited Chloe more often these past few months.  They continue to growl and cry at each other but it is fun and welcoming to watch their interactions as they get to know one another.  Reth and I continue to support each other through this adventure.  We are proud parents of three beautiful children who continue to inspire us everyday.  We have found strength, resilience, patience and love in each and every one of them and we know that comes from us and what we share.  So even though there is some sadness over being a different kind of family, we know we will continue to move forward as a family and overcome the obstacles.

Thank you to those who have reached out to us by phone, mail, and social media, and who have made visits to Chloe.  Special thanks to those who have gone, even when we have not been there.  Chloe's Sunshine family has let us know what a big difference it makes when they see our family and friends supporting her.  We are fortunate to have all of you in our lives.  Thank you.

Much love,

Reth, Michelle, Olivia, Chloe and Jackson

Happy 4th Birthday Chloe!!

Happy 4th birthday to our big girl Chloe!!



Dear Chloe,

Today I celebrate and honor you.  I so wish that you woke up in your own bed this morning to mommy, daddy, Olivia and Jackson greeting you but we will be there soon to hold you close and celebrate with your friends and family at Sunshine.  It's a hard day today because it's the first birthday that you are not home and mommy is a little sad.  At the same time, I could not be more proud of what you have accomplished this past year and only hope that you continue to be strong and more smiles will cross your face in the coming year.

This past year, I let go of your hand and you soared!!  It hurt so much to let go but you have made me so proud!  At home, I kept you close and overprotected you and didn't let anyone push you too hard or knock you down.  I stopped people at the door because I was afraid to let people make you do something that would make you cry or make you too tired.  There came a point though that I realized we had to let go and let you fight on your own a little more.  And you did!!  You pick your battles with your teachers and your therapists and let them know when it's too much or when you can go a little further.  Your hard work paid off and I now see you roll and hold your head stronger and steadier.  You've allowed us to put on your hearing aid here and there and found your love your music again.    You let us know how hard you try to keep your eyes together to focus on the people and environment around you, and somehow told me and daddy that surgery was the best option and you were right.  I can see your beautiful eyes a little better and notice how you light up so much more when you are interacting with people.  You've worked so hard to trust your new friends and you now share lots of smiles with them.  I love to hear from your new friends when they tell me that you smiled.  Your smile was lost for some time and you have found it again and it melts my heart each and every time.

You have grown so much this past year and look like a little girl. I still wish you were here at home with us but I know you are taken care of and very much loved.  We miss you more than we can ever express but mommy and daddy are stronger and healthier knowing that your needs are met and you are thriving.  Your sister misses you incredibly.  She asks more and more questions about you and prays for you everyday.  She doesn't understand still why the two of you need to be apart.  She said the other day "I thought Chloe and I would never be away from each other.  I wish she never got sick and be here and play and dance with me.  We would have so much fun."  I tell her that you are forever in each other's hearts but I know the two of you can't understand that just yet so I try to remind her of all the precious things you did together in your first 8 months.  She cries but loves to hear about your happier times.  Your brother knows you through our stories too.  I tell him everyday about you.  He looks just like you!!  You would be so proud of your baby brother.  He's starting to enjoy the mirror that you and I used to play in front of where you would laugh hysterically in my arms.  I can' wait for him to spend more time with you when he's a little older and stronger to come for visits.

You are forever in my heart and always on my mind Chloe!  Not a day goes by that I don't think of you.  You should know though that I smile more than cry these days because I am strong like you.  I know you are safe and healthy as can be.  I don't know that I could have helped you accomplish what you have done this past year without the help and assistance that Sunshine has given you and our family.  It still makes me sad to think about what you have gone through but I am happy that we can provide you a safe place to thrive and be with friends that climb similar mountains.  I am with you always and so proud of you!

Happy Birthday big girl!! You are amazing!

Love,
Mommy

Chloe - three years later. Special day - October 8, 2012

Sisters laughing on Chloe's special day - October 8, 2012

Today we celebrate Chloe and her fight over the past three years.  She is a big girl these days and yet still such a baby.  She has overcome so much but still has so many obstacles to tackle.  She has shown such enormous strength, yet her body is still so weak.  Her spirit and her fight, though, have always shined through. 

It is still so difficult to recount the events of what happened when Chloe first got sick or what we have gone through over this time.  There are still moments of anger, resentment, frustration, confusion, and defeat.  Many of these moments are still filled with pain and sadness.  It is still painful to look at pictures of Chloe before she got sick and remember those moments.  Your heart just aches and it becomes too much to bear still.  We still ask the same question over and over… ‘Why?’ There is never an answer. 

Olivia has been asking about her sister more these past few months.  She asks about what happened and tries to make more sense of what it means when your brain is hurt.  She asks for more explicit details on what it meant for Chloe when she got sick.  Ultimately, though, she asks when Chloe is coming home or she simply and very quietly says, “I miss my sister.”  An unbearable pain in my heart always seems to swell when I hear her ask for Chloe and all I can do is take a deep breath and say that I miss her too.  Olivia is lost without her best friend.  Any time she has the opportunity to make a wish as she blows out a candle, throws a penny into a fountain, or looks up at the first star in the sky, she will always wish for her sister to come home or for her family to be and live together forever.  It is so sweet and innocent when she does this and makes me appreciate their bond so much more. 

We miss Chloe everyday.  The pain we felt three years ago has never gone away but we try we move forward each day a little bit more.  We look forward to seeing Chloe grow and face new challenges everyday.  There still has not been much progress in terms of her development of physical strength but she has shown us time and time again how much strength is still alive inside her.  Her affect has calmed a bit over the past few months and she does not cry out as often.  She is still heavily medicated for her seizure disorder but we see fewer clusters.  And, best of all, when we visit her and hold her close she will laugh and smile.  It does not happen each time but when it does, it fills our hearts with such joy.  She knows she is loved, always has and always will be.  She knows when she is surrounded by those who love and support her every step of her hard journey.  She has not forgotten who we are nor will we ever let her.  She is truly amazing!

These past 6 or 7 months have been a huge adjustment for our family.  We juggle so much every week and weekend to make sure we create a home life both here and at Sunshine.  One thing I’ve learned from Chloe, though, is that you can never give up.  She has fought her way through life and continues to do so everyday and I must follow her example.  As hard as it is, Reth and I make it work so that we we try everyday to enjoy our marriage, enjoy our children, and enjoy our dreams.  It is not easy, it never has been – there are always tears, there are always arguments, there are always hardships that we endure.  Chloe has taught us so much about love, patience and strength.  She inspires us everyday to do more, to be better, to be more loving, and to be more kind.  I miss having her next to me everyday, I miss seeing Olivia run to her sister after school to shower her with kisses, I miss watching Reth dancing with his baby girl before bedtime and I know I will be crying for her the day her baby brother comes. 

She is an amazing girl who is very much loved in every possible way and for that we celebrate her today and always.  Thank you Chloe for all that you have given daddy, Olivia and me.  You are an incredible daughter and are such a gift to daddy and me.  Olivia adores you and will protect you always.  You will always be her best friend.  And, we can’t wait for you to be a big sister.  You will teach your brother how to be sweet yet strong, stubborn yet loving and all from being just the way you are. 

We love you Chloe!  Even though you are sometimes so far away, you are always in our hearts. 

October 7, 2012

When will it ever end or when will enough ever be enough?!  We try to make sense of all that she has suffered and all that she continues to endure and we feel like no one ever hears our plea to make it stop, to let her enjoy what life she has, to allow us to move forward and feel happy.  It seems whatever forces working against her and our family only seem to seize for brief moments of time until another wave comes and beats us down.  She proves her strength, we pick up the pieces and regain strength to only have another blow knock us down.  Yes, she is better but it depletes us each time there is a setback, and there have been many. 

We just recently found out that Chloe’s immune system is somewhat deficient and we are working with an immunologist to find out how to boost the antibodies that her body lacks.  While in Cornell early September, it was advised by her team that we run further bloodwork to investigate the reason why Chloe has now had two serious blood infections.  It turns out that she has very little to no antibodies for three viruses that each child is vaccinated – Dtap, HIB and meningitis.  Upon these findings, we immediately re-administered her vaccinations and hope that this will jump start her system and start to produce the antibodies she desperately needs.  We are unsure if she ever produced these antibodies or if this was the reason why she was infected with bacterial meningitis.  Babies are protected for the first 5 or 6 months from the antibodies received through the placenta via the mother.  After this period, it is up to the individual’s body to produce its own protection.  In Chloe’s case, we are unsure her body ever provided her the protection she needed.

Finding out this news was helpful in giving us some answers but was obviously devastating at the same time.  As a parent, you do everything you can to protect your child – you follow your instincts, you read books, you follow doctor recommendations.  We vaccinated her, we brought her to well baby visits, we read and researched (too) many baby books and still we could not protect her completely.  Part of my heart ached knowing that I only nursed Chloe for a month and I felt that immediate sense of guilt rushing back.  There were circumstances that prevented me from nursing longer but if I had, would she have been more protected?  Guilt is the worse thing any parent can have in situations of having a sick child so this made me ill. 

It is still hard to completely accept that fact that there was nothing we could have done to foresee any of Chloe’s suffering.  This is why it is so hard when people, even ones closest to us, continue to say things like – ‘why did this happen, why didn’t you bring her to the doctor, didn’t you see it coming?’  I know there are people out there who think, ‘how could they not have known? or how could they not have done more? or why did it take it so long for them to see? or why don’t these parents fight more, pray more, do more, work harder?’ I see some people look at me with their pity and it makes my blood boil.  We would do ANYTHING for our girls and the new baby. We have suffered and sacrificed so much than we could ever explain to others.  Many of you support us and hear us when we share our cries and we are grateful for those who understand and sympathize, not pity.  You will never know the value of those moments of sympathy and empathy you genuinely share with us and that’s what makes us fight even harder.

Tomorrow we will celebrate Chloe’s three year mark of surviving her meningitis.  We had a quiet and peaceful weekend planned so that Chloe would come home and we could enjoy some real family time at home.  Unfortunately, we once again had a delay in our plan.  I sobbed yesterday as I ran out of Chloe’s room in Sunshine and fell into a chair, screaming one word, “Enough!”  Reth, Olivia and I had driven to Ossining with such high hopes to bring Chloe home.  There haven’t been many visits home this summer or even for Olivia’s bday because Chloe was sick or was exposed to and potentially carried germs of other viruses from the hospital children.  This would have been her first visit home in a long time and we were ecstatic, especially Olivia.  As we packed her bags, we found out that she had been started on another antibiotic this past Thursday that we had not yet been told about.  Apparently, one of her caregivers had woken up ill, and after an ER visit received a positive result for strep.  With Chloe’s immune system already compromised, she was immediately put on an antibiotic prophylactically.  As we prepared to leave, a nurse urgently came into her room telling me to put on a gown and mask and escort Olivia away from her sister as the final results of a throat culture came back positive for Group A Strep. 

Pushing my way past the nurses, I left the room with devastation.  Explicit directions were given that extra precautions needed to be taken around Chloe until we figured out how to improve her immune system, so why would they let someone who works with 20+ children in the hospital be in direct contact with her?  We don’t want Chloe to live in a bubble and be on contact isolation forever but until we have more answers, people who feel even the slightest compromise in their own health should not be taking care of her and spreading their germs.  Almost 8 months pregnant and having Olivia at risk was not an option and we decided to let her finish 48 hours of antibiotics before trying to take her home so we left with tears, frustration and defeat. 

What will it take for us to have some sort of normalcy?  Is it so wrong that we want her to be as healthy as she can be at this point?  Hasn’t she been put through enough? Is it selfish that I want my family to move forward and be able to enjoy life? When… when will I ever feel that our life is somewhat back on track? After Chloe got sick, we knew our life would never return to the way that it was and we expected a long road and have dealt with those ups and downs but why can’t we also have time to enjoy?  I don’t mean to make it sound like everything has been so bad but times have been difficult.  There’s no sense in complaining about it when people ask so we sugarcoat and work it out but of course, there are days and months that are just a mess!! 

In reality, many of our dreams have been put on hold – our careers, our dream home, our adventures.  It’s not easy realizing that your life somewhat stopped when a devastating experience happened, but ours did.  Like I said, we’ve picked up pieces and regained strength time and time again but the effects are forever in our hearts and impact our everyday life, along with our hopes and dreams.  Everything and everyone else moved forward after October 2009 but we have, in many ways, felt stuck.  Even with the upcoming excitement of a new baby, a new life and love coming into our lives, it is still difficult.  Making room for baby#3 brings a sense of moving forward and a great feeling of love and strength but it is scary and emotional.  Creating a place where Chloe used to sleep, emptying her drawers to make room for her brother’s things, unpacking her old stroller where she last sat and had her last smiling picture three days before she fell ill, the toys that she never relearned to use, the books she never reached out for again, the seat where she would playfully beg for more and more food, the swing where she last sat before rushing her to the ER three years ago and where she last smiled. Of course there are new things we bought for the baby and we will make new memories, happy ones for sure, but we can never forget or push aside what has happened.

There will always be a place in our apartment for Chloe to come home.  She will always be there and with us regardless of the fact that she sleeps and is cared for in another home.  She is the reason why we know how to love so much, and she taught me to be the mother that I have become.  She is the one who inspires us and gives us strength to move forward everyday.  She is why we have learned to fight so hard, to advocate and use our voices.  She is never far from our hearts, our minds, our beings.

Tonight, Chloe and Olivia will have their long awaited sleepover and it will be joyous.  Tomorrow we will have our family day and enjoy.  We will not think about her sufferings but celebrate her fight.  It took us awhile to get her out today but Reth just carried her to the car as she winced as the cool autumn air touched her face and smiled as we pulled away from her nursing home.  I finish this blog as we drive home with her in her car seat, kicking the back of my chair, happily sucking on her finger and sitting next to her sister.  The way it should be…

Much love,

Michelle, Rethier, Olivia and Chloe

An update and a trip to the pediatric unit...

Smiling in July

Sisters in August

Olivia's Bday - September

This blog has been a long time coming.  We have wanted to share with you how things were going since Chloe’s move to Sunshine.  It has been a wonderful place for Chloe.  She has two roommates around her age who are pleasant and friendly and the staff treats her like the princess she is.  She is dressed nicely everyday and participates in activities with her recreational therapists as well as her rehab team, and she is starting preschool this Fall in the small school that they have on hospital grounds.   What is great for us is that it is such a small facility that we have come to know many of the people who surround Chloe and we have been very happy overall.  They make such an effort to keep us updated on the activities they do and hang up her assisted art work around her room.  Sunshine also has this great pond and fountain that our family loves to walk, run and scooter around.  Olivia enjoys running around the adaptive playground playing tag with Chloe in her wheelchair (guess who always seems to win) and likes to race around the pond circle as if it were a track.  Chloe loves to be outside so it’s a picture perfect setting.  We only wish we were closer. 

We are still fighting to get her into St. Mary’s in Bayside but the waitlist continues and there is no bed in sight.  It is very difficult and frustrating for us as we miss her everyday and those feelings of heartache never seem to fade away.  Our little girl is growing and doing amazing things and we feel like we miss those little moments but are so happy that she has been thriving.  Seeing the care that she receives 24 hours a day and the rehab that they offer lets us know that we have made the best decision for her.  Her newest tricks include rolling from back to belly to back and they have been able to use her standing system more often and set her up in different types of seating systems to help her regain some control of her head and trunk.  She is also smiling for us a little more when we come to visit.  She absolutely recognizes us and it’s only seconds until everything falls back into place when we hold her.  Back in May this year, we decided to go ahead with one more surgery to help Chloe.  Since falling ill, she had developed strabismus in both eyes (lazy eyes).  Throughout the day, we consistently noticed that Chloe brings her eyes together on her own but her muscles have weakened over these years and you can see her eyes wander to the side before her brain tells her to bring them center again.  Because she herself is trying to correct it every time, we felt another surgery would be appropriate.  It has been a success so far and we have noticed great improvement in how she can focus on people and objects and enjoy her environment a bit more.  There will be more surgeries for her eyes over her lifetime to keep her muscles tight but we are happy to see her big, brown eyes together as she smiles and even giggles with us.

            

        At home, it is still difficult to deal with our living situation.  It will always be a transition and always seems like a juggling act.  We have tried to focus on finding a sense of stability at home for our own sake and for sweet Olivia.  We were able to take Olivia on vacation with my parents and give her some much needed family time and have really tried to make time for each other as a couple.  Still, day to day is hard as I feel stressed between driving the distance to see Chloe and rushing home to be with Olivia.  Reth, as well, is torn every night as he leaves his long day of work – faced with the decision to come straight home for dinner or drive up to tuck Chloe into bed.  It has been an adjustment and a struggle as we still grapple with our guilt and insecurities but we still stay true to our decision and work through it the best we can.  There is just such a quiet and emptiness in our home that we can’t seem to fill.  Sometimes the stillness is just so thick, it is hard to breathe.  Even for Olivia, who always points out that it is too quiet in our house and begs for someone to play with.  She misses her best friend terribly but is starting to understand a little more that her sister is a special person with different needs that mommy and daddy cannot meet alone.  But we take it day by day and push through as Chloe has taught us to do since the very beginning.  I always seem to find myself saying, ‘If she can be strong from 8 months of age till now, then I can push harder and be stronger as well.’  Still, though, there are many moments of weakness and feeling beaten when we just miss her so much and can’t bear the pain.  We try to see her at least once during the week and my parents continue to be so generous in helping us on the weekends so that we are able to stay closer to Chloe's hospital in Ossining rather than driving back and forth.  This is another plea to anyone out there who has any pull or contact with St. Mary’s of Bayside, please help us to get her a bed so we can be closer and be even more of a support to her.

           

            So now, the downside of Chloe's health… Last Monday, we were admitted into New York Presbyterian – Weill Cornell pediatric unit for a blood infection that required heavy doses of antibiotics through an IV.  Originally, we were scheduled to come in for a routine overnight visit EEG to check on her seizure activity but we were called early Monday morning to alert us that she would be coming in on an ambulance in the ER.  She came in groggy but was soon cooing and kicking around so we thought she was fine but after 9 hours in the ER, many blood tests, a shunt tap, and a starting round of two antibiotics through IV, it was confirmed that she had an infection in her blood but it’s type was unknown.  Chloe’s white blood cell count was high and increased overnight so we knew something was brewing.  It was Group A strep which made its way into her bloodstream.  Unfortunately, since it was in the blood we were set to stay for at least 5 days of IV antibiotics.  As her white blood cell count improved, we were hopeful.  Friday afternoon, however, I noticed some drainage coming from her left ear and another infection was soon confirmed.  A ruptured tympanic membrane that is essentially an ear infection was now diagnosed.  Doctors are still working to find the right antibiotic to work on both the blood and ear infection together so that Chloe will not have to be on so many different medications.  The real worry is that the left ear is also where her cochlear was implanted so there needs to be a more aggressive approach to her treatment.

            For the most part, she is comfortable.  Cornell staff has always been a blessing in our lives.  Everyone knows Chloe and she is getting the attention that she deserves.  They take great care of her medical needs and keep her happy.  They even decorated her crib with colorful art hanging above her as they know Chloe is not able to make use of the typical crib toys.  Thank you to the kind person who left that for her.  It was a nice treat for us to see after taking the night off to be home for Olivia’s bday celebration.  We know Chloe is in good hands.

            As for us, like I said, we take things day by day.  This trip was obviously not easy for us as we did not see anything like this coming.  What we thought would be an overnight routine visit has turned into a long stay with a still undetermined departure.  As many of you already know, we are expecting baby #3.  It is more difficult for me to be here with Chloe as I am unable to pick her up and help as I normally would.  Chloe has also been on isolation so I’ve been trying to be more careful.  Reth has taken every overnight shift since I cannot stay on the hospital couch and has been running back and forth checking on me and Olivia.  The timing was also tricky as Olivia’s 6^th bday wish was to have Chloe come home for a sleepover and be there for her party but being the best sister she can be, we compromised on having a special cupcake with extra icing that she could feed to Chloe (just a taste) during a brief visit over the weekend. 

           

            Thank you everyone for your kind emails and messages, for your support and for making Olivia’s day special in the middle of this craziness.

Much love,

Michelle, Reth, Olivia, Chloe and Baby Atienza