One year...

It has been one year. One year since we’ve seen her big smile. One year since we’ve heard her laugh, since we’ve seen her play and bounce and sit up. One year since she has looked at us with her sparkly eyes. One year since we’ve enjoyed a meal with her laughing and begging for more food. One year since she and Olivia played and rolled around together without fear. It’s been one year since we’ve held her in our arms and felt her arms wrap around and squeeze. One year since she's held her arms up high to reach out for us. It’s been one year since we’ve felt her lips move to kiss us back.

A year ago today, we held Chloe limp in our arms moaning in pain as we rushed her to the ER. A year ago, we watched a team of then strangers work till 3AM to stabilize our sweet little baby. We watched her gaze fall, we watched her get poked over and over again with no response to pain, we watched everyone move around the room, around her bed, hover above her trying to figure everything out. Our hearts broke and we cried, then we screamed. It’s been one long year of heartache and crying. We’ve cried everyday. It's been a long year of hospital stays, surgeries, blood draws, tubes and needles, doctor visits, tests, medicine, therapy. More heartache. She has never said mama or dada or sissy. She has never crawled or taken a step on her own.

She has suffered more than any of us ever will in our lifetime. To think of her future, it is hard to see past how she may struggle and think how cruel the world may be to her.

But…

My strong girl, you are here with us! You inspire us everyday. You are forever our hero and teach us everyday how to be a better person. We have doubted our parenting, our faith, our being but you have always brought us back. So many people say that we have been strong but it is you who has the strength. A sweet little baby who has gone through so much trauma, yet is still so perfect!

It is so hard and we don’t know what the future holds and we so wish that we could say that everything will be fine and we’ll get through it but we can’t. We follow your lead, Chloe, and vow that we will be here to hold you through anything and everything.

To all of you, our dear family and friends,

We know you cannot imagine what kind of heartache we go through and struggle with daily, so we hope that this blog has been a help to understanding our life. In each letter we write, we pour our candid thoughts to you because you are such a support to us and help us make it through.

Thank you for being here with us, for holding us up when we fall, for listening to us cry and scream, for being silent when there are no words to be said, for everything.

Today we celebrate Chloe and all she has overcome this past year. We give her strength to move forward from dark days. We give her strength as we enter more unknown. We give her strength always.

Much love and many thanks,

Reth, Michelle, Olivia and Chloe

Culture Shock

Since April we have been working with therapists at Clarke School, a school for children with hearing loss, to help provide Chloe with auditory/oral education and guide us in learning about her cochlear implant. Unfortunately, Chloe’s seizures became an issue soon after her implant was activated so her progress has been like much of her life, a roller coaster. We have seen a difference though with the cochlear on as opposed to it off. Chloe’s eyes tend to grow big when she is hearing, her legs kick out, and she seems much more engaged. There are times when she moves her eyes or opens her fingers if she hears a noise. She has not yet started to mimic sounds but she is able to produce different cries and sounds to get our attention.

It became obviously clear in the earlier days that we would have to look for a more specialized setting or school for Chloe when she turned two or three so I have begun looking into different programs for her. With the list of diagnoses and unknown prognosis that Chloe carries with her, finding a school that will fit her needs has not been easy. Some schools will not take a child so young, some schools will not take a child with her feeding needs, some schools do not have equipment or have the therapy she requires, or some schools will not take her in a wheelchair. I have offered to stay with her to help and be there for her transport but our options seems to be limited so far.

With the help of our EI team, we found the Lexington School in Queens. It is a school for the deaf. Yes, Chloe is a deaf child. As hard as it is for me to put that label on her, it is the truth and has been much harder to come to terms with than labeling her physical disabilities and neurological impairments. I could go off on a tangent and talk about how harmful and hurtful labels are to any person but in that one sentence alone of knowing that my once normal hearing child is now deaf, I hope you can understand our heartache. But, we are not alone in this group; there are many others who deal with deafness.

The Lexington School is different than Clarke School in that they concentrate more on total communication that is a mix of speech and sign language. Though I was prepared with this information in mind, I was not emotionally prepared to face the culture shock. I cannot say that I really know any deaf people in my life. I’ve worked along side a couple people and took a class with a deaf student. I learned and taught some signs in my classroom and taught them to both Olivia and Chloe. I’ve never really let deafness or sign into my life though. And when the time came for me to observe, absorb and welcome it, I was not prepared. I have not been prepared for much of what this past year has presented but I lost my balance with this one. I don’t share this story with you to display ignorance or insensitivity but more that I share with you an experience of overwhelming culture shock. It somewhat blew me over to enter into the school community and see the older students walking in between classes and signing and talking. Some had other physical disabilities that you could see but their one commonality was their deafness and the way they communicate. The group that was meeting me greeted me, with both speech and sign. I was thrown into a group of parents, some hearing and some deaf, who shared their stories of what type of device their child wears (if any) or raising children in a deaf community. Like I said, Chloe’s hearing loss has been difficult to digest and working through the implant and its activation has not been easy so finding my place in this community was extremely difficult. And again, what is most difficult for me to accept and share is that we are a family that had a normal, hearing child who went through something catastrophic. Emotions grow higher and become more complicated when I speak to any parent or group that has been going through any kind of difficulty from birth.

My heart sank as I sat in the group. I would never have thought I would be here with my child. It was comforting to know there was a community of teachers and parents who could support us but I was so overwhelmed in dealing with the idea that I was there with Chloe.

After the parent meeting, I sat with Chloe’s teacher to talk more about what the school can offer our family and am hopeful that her instruction will help us to communicate more effectively with Chloe and help us build a bridge between our hearing and deaf world. Chloe is the only deaf person that many of us know and as much as I need her to be a part of my world, I have to understand hers so I am hopeful that this program will help to find ways for us to work together and prepare Chloe for school and future.

Much love,

Reth, Michelle, Olivia and Chloe

Finding the right balance...

Two months have passed and we continue to work with Chloe’s team to gain control over her seizure disorder. It has been difficult to navigate through this process of trial and error of medications, as Chloe has not been reacting well to certain mixtures. For a few weeks, something was making Chloe so ill that she would vomit at least once a day. It was not simple; it was violent and scary. And though she looked relieved and comfortable afterwards, it exhausted her. It became so much of her daily routine that we sat her mostly in a comfortable chair so we would not disturb her equilibrium any more. She would sit with blankets and burp cloths on top of her pretty outfits so we wouldn’t have to change her completely and make her suffer through yet another change or bath. Her seizures seemed to be slightly better though. She did not have such big bursts. They were mainly mild but high in number; there would be a series of about 10-14 jerks. She maintained her therapy regimen and remained fairly calm. Her smile did somewhat return for this period but we soon learned that it was a precursor to her seizures. Some children cry (as we witnessed in the earlier stage), some yell, some giggle, some smile. Her doctor told us that sometimes children see an aura or feel a tickle. How great it felt to see Chloe smile and let out a tiny giggle but seconds later we would be holding her as she seized. It was bittersweet and in the end, we cried more than smiled along side her. A couple times though as we sat and waited for the seizure burst to come, they never surfaced and we sat and held her hand and enjoyed the moment!

We played with new medicine again and adjusted the amounts. We played with the amount of food and the volume of formula versus water she was being fed through her tube. She has not been receiving many calories in a day but thankfully she is still gaining weight. Some days we saw only dry gags and other days it was a mess. We decided last month to try one last medicine before changing her diet completely. It seems like we have been on this constant search for the miracle drug to be the cure all. Life is not that easy though – I ache for the days that a bandaid, a kiss, and maybe some Tylenol would wash away all the bad things in life.

The new medicine arrived a couple weeks ago but having Chloe on three very strong doses of anti-seizure medicine has made her very sleepy and lethargic. Her sleep cycle is even more crazed than before. We are slowly phasing out one medicine but everything together is too much for her. She has some trouble falling asleep at night but has not been waking until very late morning or early afternoon. I wake her, bring her out of the crib, change her, dress her, stretch and massage, move her around but she does not really stir. She is agitated but does not wake. Her eyes are so heavy; you feel her struggle and sense her pain as she attempts to open her eyes even the tiniest bit. You feel so pained for her that you just let her fall back to sleep. When she finally wakes, she is alert and willing to work through her therapy but it tires her out quickly. She is much more floppy these days because of her tiredness. She has slept through so many sessions that she has lost some strength again. Even though we try to move her as much as we can when she is awake, it is not enough to make up for the time she spends asleep. Her seizures are better. They are mild and less in number. Her lethargy scares us though. We continue to work on finding the balance in her medications so that she is more productive during the day.

In a couple weeks, she will return to NY Pres for another EEG. We hope that they will confirm the decrease in her seizure activity. And hopefully we will soon find the right dose of medicine so that we can enjoy Chloe more during the day.

Much love,

Reth, Michelle, Olivia and Chloe