Moving forward...

Life has a way of pushing us past wants and hopes and what we're left with is the harsh truth of reality. This is a blog update that is extremely difficult for me to write. It scares me to write out these truths because then it becomes more real and though it should not matter, it scares me what people will think or say about the decisions that we have made and have been moving towards these past few months.

Last Monday, we admitted Chloe to a long term facility called Sunshine Children’s Home and Rehab Center in Ossining, NY.

For almost two and a half years, we have done everything imaginable for Chloe to help her heal, to give her brain and body a time to rest and rebuild. We have remained bedside and held her hand through the most difficult and unimaginable situations for a baby. Her little body has been through so much and every morning she wakes up to yet another fight. She has made some progress since the beginning and in my mind she’s the strongest little girl I know and still amazes me everyday. But, the medications continue to change and increase, the seizures consistently come daily, the nights become long as she cries out loudly and lies awake, and her muscles are more difficult to move as she grows bigger and longer. Chloe still can not sit up but she can roll her self from side to side but not fully on to her belly. She still has never reached her arms out to ask for us or give a hug nor does she squeeze back when we hold her tight but she will, at times, gently wrap her little fingers around ours. Chloe is deaf but has learned to somewhat humor me in wearing a hearing aid before brushing her ear on something to knock it off. She does not speak but can bat her eyes at me to tell me she is there or far away in the distance. Sometimes, not much, she will coo and give a tiny smile. I like to think that it is on purpose but, in truth, I don’t know half the time. Most of the time, I’m not sure she knows what is happening to her nor does she understand her own cries.

She is still just a baby. I feel so helpless everyday and it breaks my heart to not know how to make it all go away. I think back over these past 2.5 years and it feels like a lifetime of heartache has passed. She’s gone through so much – so much brain injury, surgeries, constant testing and blood draws, so many evaluations, the list goes on… The first year she came home, it was survival. Reth and I took everything on. We learned how to do everything. I learned how to observe all her behaviors and search for meaning in her cries and eye movement. I painstakingly sat through google searches and state official meetings to gain access into any service or system that would help provide therapy, nursing, accessibility. Numerous doctor appointments filled our week and when we were home a team of therapists or school visits would fill our time. Our lives were turned upside down but we pulled through. But when that first year mark passed, it felt like more of a loss because we hadn’t moved very far in our journey towards recovery. Chloe was still not in a good state, her seizures worsened, more medicine came along, we still had not been granted Medicaid, we still did not have nursing, we still fought for more therapy and fought harder to find good people to provide therapy, we still searched for answers and consistently fell short.

Year two of Chloe’s recovery we were hit with a surprising amount of truths and personal lows in our journey with her and within ourselves. I remember thinking the day after her one year mark, “What the hell am I supposed to do now?” I don’t know what I expected after one year but I did not expect to be drowning in my fears and realities of having such an extreme special needs child. It was so much on her and our family and then another long hospitalization came as her seizures became so fierce and violent as they recorded well into 80+/day. Soon Chloe’s illness really began to hurt. It was never easy on us as a family, as a mother, as a father, or as a sister. But the pain became so unbearable sometimes. Like we’ve said in past posts, the anger was overwhelming, the questioning of our parenting was crushing, there was tremendous guilt, a loss of faith, there was a lot of frustration that turned into fighting with each other or with anyone involved in our case. Nothing was ever good enough and we could not find any answers or any peace in our lives. We suffered as parents. Olivia suffered watching her little sister and her parents struggle. They say children grow up fast in these situations. As much as we tried to keep her innocence, Olivia has witnessed too much and has felt too much to be a ‘normal’ child. Though she is amazing and will continue to do such special things in her future, her childhood innocence was left behind along the way. She’s lost her best friend. She cries at night that she is alone and has no one to play with. It still strikes me how close and protective she has been of her sister through everything. Olivia and Chloe are an amazing and inspiring pair.

The truth slowly sank in over this past year. Chloe’s cognitive state has been consistently evaluated to show she is at a 0-1 month old level. Physically she performs at closer to a 2 month level. We had hoped so much to improve her abilities and will continue to do so but these levels have not changed. There was a time that her physical state was slightly better but as she has grown, her weight and height have made it more difficult for her to move her muscles against gravity. Over the past 8 months or so, we have spoken to our very devoted team of doctors, specialists, and therapists about Chloe’s quality of life. It was a turning point for us to hear others say that we have followed through on all attempts to help Chloe recover. It was not easy for us to ask for or accept a prognosis on Chloe but we needed to hear it out loud. She suffered extreme neurological damage which has affected all her functions and though we had all hoped for better recovery, it was time to think about making her comfortable and stop trying to fix things. At that point, we knew our expectations shifted and the baby girl we once knew and hoped she would be would not. Though defeated, we knew that it was best to concentrate more on relieving her seizures and helping her sleep through the night. So what if she doesn’t walk or stand up, so what if she needs to be fed through a tube for the rest of her life, so what! She is who she is and she has fought to stay alive and pull through so if at this point in her life I can simply make her comfortable and give her the some quality of life, then to hell with all the developmental milestones. I just wanted her to feel safe and secure and, most of all, comfortable. No more brain surgeries, no more making her scream and cry through physical therapy to make her stand and make her body do things that hurt her (but were good for her), no more poking her head to keep on the cochlear implant. There were other things I could work on that would not make her hate life.

We began our official search for a long term place back in November and began to put our name on waitlists for a bed. It took us a long time to come to terms with this step and believe me when I tell you, this was a very painful and difficult decision to make. This was not easy in any way, nor does this decision make our life easier. We have cared for Chloe everyday, everyday we have stayed along side her. No parent wants to be in this position to make a decision like this. It rips our heart apart and sometimes we can’t breathe and it will continue to hurt for a long time. But, it is what she needs, it is what our family needs. We all need to heal right now – Chloe, Reth, Olivia, me. As Chloe continues to get better and worse and go through this roller coaster, it is clear that I need more help monitoring her and keeping her safe. I have become very good at documenting her every behavior, following her everyday, loving her every second but at some cost. I left my career that I loved, I feel that I’ve lost out on such precious toddler years of Olivia that I can’t get back, I’ve taken many hits to my self esteem and self worth as a person, as a mother, as a wife. After everything, I would not change a thing. I would never take back any of these days I have spent with Chloe but the one lesson I have come to accept is that I am not her doctor, I am not her therapist, I am not her social worker. I am her mother. There was a time that I lost sight of that simple fact. It has taken all my strength to accept that I need more help in caring for her. I need to be just her mother. No mother (or father) can put into words how much they love their children, but I do love my girls more than I can ever convey to you. This decision hurts more than you know but Chloe will be safe and taken care of at this place and can grow into an environment that will support her and her needs.

I promise to her that I will be there and always be her mama, and continue to be her best advocate. She will never be far from us. We will visit her often and after a short while, she will be allowed overnight visits with us up to 8 times a month so we can take her home for weekends, vacation, or special events. Olivia has already met most of the staff and has taken her place as Chloe’s best helper in therapy sessions. All we can do is try our best to be there for each other and our family and we hope that you will continue to support us.

We understand that this is also very difficult for you to understand and accept. Some may agree and think this is best and even wonder how it took this long, but some may disagree. However you feel, we hope that you will respect our decision at this time. If you want to know more or have specific questions, we encourage you to reach out to us. We are still very much hurting and feeling our way through this transition. Nothing is permanent but for now we feel that this is the best support we can give to Chloe.

We are still a strong family. We are a different family. We will always love and support each other.

Much love,

Michelle, Reth, Olivia and Chloe