An open letter to God...

It has been 3 very long years...  for me, my son, but especially for my innocent Chloe.  Lord, as I seek to understand Your ways, here I am again, asking why?  As soon as she begins to establish some ground and begin to recoup... the monster strikes again.

I know I shouldn't have been, but I've been waiting for the other shoe to drop... It always does.  I've watched my precious daughter go from a fiesty, happy, energetic young lady to a lifeless, sullen, detached shell of her former self.  I still can't understand why?  Why do the answers continue to elude us despite my best efforts?  Why do none of the professionals have any solutions to her plight?  How long can she go on this way?  How long can I?  The questions always outweigh the answers... Always.

I feel like all of our efforts are in vain.  Are they?  If Your will is to ultimately take her home from us, why all of the suffering?  Haven't we learned enough?  Haven't You taught us enough through this process?  She is so innocent, an innocent, pure victim.  My heart breaks daily...  I feel helpless.  You are the hope that I hang on to, the hope to get through another day, my only hope in this entire world.  When will her turn come, for mercy?

I am struggling to understand, to trust Your ways.  I am human Lord.  So is she.  I've turned complete control over to You, and I continue to trust her in Your hands.  Not without faith,  I know all to well what You "can" do but seek to understand why You "won't"?  The threats of kidney damage, dialysis, even sepsis loom in the corners of my mind everyday.  Like a dark cloud that never leaves, because I know it could all end, in an instant, or not...  I am completely honest in the fact that my hope is waning.  I hang on to Your promises and the minute shred of hope I have left for our futures together, for my daughter to be restored, for her to find some peace... just a little would do.

Today, broken and defeated,  I lie her before You once again Lord, merciful Lord, and I pray for resolution and to understand Your divine ways.  You are still our refuge.  Our only hope.  Thank you for another blessed day with my angel.

Chloe... the early years

My daughter, Chloe, has been the sweetest blessing to my life, my most treasured accomplishment, and also my biggest challenge. I should've known she would be from the very beginning, and on an unconscious level, I think I always knew that to be true. Today, she is still one of the most purely beautiful people I know. I am insanely proud and honored to call her my daughter. I am so grateful for all of the life lessons she has taught me and how she has helped me to grow as a mother. Our life together has been full of ups and downs. There have been great moments of incredible triumph and hours of deep, unmeasurable despair. Her story is long, and full of many twists and turns, so complicated that I will have to tell it in sections. I know, without a doubt, God has given this remarkable young lady to me as a very treasured gift; to love and to cherish for as long as I am able to be graced with her presence, and to teach me of his unconditional love and of tremendous patience...

Chloe was born July 6, 1991. I was only 18 years old. Alone and scared to death, I prayed for the strength to not only birth her but to be able to actually care for her in a responsible way. A child myself, her father also (who chose to back out early on before her birth), I chose to keep my daughter and make a little lemonade out of my irresponsible behavior. My parents, extraordinary and forever loving, in their undying support were behind us completely. Needless to say, I could NOT have done it without them! Chloe was the product of a normal pregnancy and delivery. A healthy, although small 6 pounds and 8 ounces. She had the most amazing bright, large hazel eyes with the longest eyelashes I had ever seen. A tiny, perfect package... :) Before we even left the hospital to go home, I felt something, deep in my gut that only a mother can know. I knew something was not right. She cried endlessly, had difficulty breastfeeding, and would go stiff when I held her- always looking away and not to me as a typical baby would. I blamed her early behavior on my lack of mothering skills, my immaturity, and became even more determined to bond with her- despite her unwillingness.

In the early months, Chloe didn't cry. Instead she screamed like a banshee, like nothing I had ever heard before, incessantly for hours on end. She had feeding problems, sleeping issues, no social abilities or desire whatsoever. She seemed overstimulated by sounds, smells, tastes, and simply touching and handling her. We attributed it to colic, seemed logical enough? At about 3 months of age, my mother, Nanny-as my kids call her, became concerned that she still behaved like a newborn and was not yet trying to hold her head up. I, still oblivious, continued with my consoling and tried to get my baby girl to smile or at least look at me. As the months drudged on, we were probably in the pediatricians office at least twice a week for either feeding difficulties, failure to thrive and grow, recurrent ear infections, and constipation issues. I remember it all like it was yesterday. Six months passed, she still had not developed head control and began to arch her back and throw her head back, in fact she seemed to prefer to be upside down than right side up. We have pictures of her doing this. By the time she was 8 months of age, she was not yet sitting alone, made no effort to try to crawl and detested tummy time. Our concerns continued to grow. I would have surely gone insane if it had not have been for my mother, her patience, and encouragement. The pediatrician finally made a recommendation for her to see a neurologist for assessment and referred us to a physical therapist for the missed developmental milestones. The neurologist conducted an EEG to rule out seizures, it came back perfectly normal- still strange to me considering every one she has had since that first one has been grossly abnormal. It still wasn't clicking with me, I didn't fully understand what was going on or that there was something terribly wrong. I was a very young mother, after all, and just assumed things would happen in their own time. Right? We went to the physical therapy evaluation and the therapist assessed her. The only thing I remember about that appointment was the therapist raising the possibility of her having cerebral palsy. Then it clicked, I panicked, and became fearful of the future. How would I be able to raise this child alone? She couldn't possibly be disabled. The word itself brought horror to my mind, I was defiantly perched in denial.

The months continued to pass, and as her first birthday approached, she still wasn't able to sit alone, crawl, or even stand. She began physical and occupational therapies. She continued to have feeding issues and failure to thrive. While physical therapy worked on her gross motor skills, occupational therapy focused on her fine motor abilities and intense sensory integration issues. It all seems like a blur, today. By 15 months, we were referred to a very gifted speech pathologist to assist us with the feeding issues, lack of vocalizations (beyond screaming and minimal coos), and lack of social and emotional reciprocity. Yes, over a year old and she still would not look at your face, explore your features, or smile when spoken to. She did have a smile, however not social, and only when stimulated by outside stimuli~ things that spun, the ceiling fans, Disney sing-a-alongs. Everything seemed to either enrapture her or completely terrify her, there was no middle ground. Her list of specialists continued to grow as well as she had an orthopedic doctor who conducted serial casting and bracing for her right clubbed foot. A geneticist who conducted extensive genetic testing, turning up zero answers. A pediatric neurologist who followed her lack of head growth (microcephaly), failure to thrive, and developmental delays. I became obsessed with her therapies. I took her to almost every scheduled appointment to try to learn all that I could to assist my baby angel in trying to overcome her many difficulties. I worked with her for hours each day, following through with every directive. I truly felt that if I worked with her hard enough, and frequently enough that we could beat this cerebral palsy thing. How much I had to learn...

By the time she approached her second birthday, Chloe was still not yet uttering a word, not yet walking, and had just begun to sit unassisted. She still remained unsocial except when I or my mother would rock her which seemed to be her greatest time of comfort. As long as she was swinging, being rocked, or rocking herself from side to side, she at least appeared to be complacent. I was going through a myriad of emotions. I was depressed, angry, and resentful. How was it that all of our combined efforts were making zero difference? Why me God? Why her? I wrestled with these emotional issues and struggled to get enough sleep to keep going through the day with her (as she never slept contently, and wouldn't today without the assistance of medication). Thank God for my amazingly positive parents, all of their love, support, and ability to help us... I'll say it again, we would have never survived those early years without their help.

A breakthrough occurred in speech therapy, of all things. No, not talking, but instead she showed an intense interest in printed words. She loved books, not being read to, but thumbing through them and when given flashcards for the first time, her reaction was very interesting. We were trying to teach her to associate the printed word to the picture of the object as well as the spoken word. She seemed mesmerized by them. We noticed that with practice she seemed to recognize the pictures and printed words when given a field of two choices. You could ask her, "where is the dog?", and she would choose the correct flashcard with very high accuracy. Then we switched to the printed words alone, she continued with the some level of precision. We could go through a stack of 90 cards and she would get at least 80 choices correct. I was ecstatic!! My baby girl was in there!! I couldn't wait to report this to her neurologist to try to prove to him that there was something there. This became my new obsession, trying to prove the doctors wrong...

I will never forget that neurology appointment. I went in there with the flashcards and toddler in tow. I explained to him what we had observed her to do, and even demonstrated. The cold, clinical neurologist looked at me and told me it wasn't possible. That he suspected there must be some kind of cuing going on. Then he told me the words I will never forget as long as I live. I remember it like it was yesterday, never had anyone's words hurt me with such intense pain or carelessness; "You know your daughter is severely, mentally retarded, and will never be able to do anything on her own." That sentence undoubtedly leveled me... I looked at him through the tears and said, "You don't know anything about my child and I will not stand here and listen to this!!". My first step in advocacy, a first step towards having to defend my child's abilities and strengths for the next 20 years!! I cry, still, as I am writing this... The emotions too much to feel again. I remember the car ride home with my folks, sitting next to my baby girl, crying the entire way home. I doubted myself, my daughter, our future. Surely he must know best, he is a specialist after all. I am simply a young, stupid mother. I mourned, truly mourned for my child for the first time. At least before I had hope and dreams. Whatever dreams I had had, he collectively squashed with one sentence. I couldn't forgive him; he must be inhuman. I called the patient advocate at the center where he worked, explained what he had said and told her I would never take my child to him again as long as she lived. The advocate was understanding, empathetic, and said she would find us another neurologist. I was grateful for her kindness, at least I knew I wasn't going mad! Weeks rolled by, and eventually I was able to regain my hope, but not without the lingering thought, that just maybe he could be right...

Why Blog?

I tried unsuccessfully to start this blog a year or so back. Life got busy and threw a lot of obstacles in my way. Surgeries, problems with the EX, financial strains, etc... etc... I didn't realize then, that taking a little time away to write would be such a gift in that it allows me to put my thoughts and feelings to paper, and in return would rejuvenate and restore my energy. It's also a great source of stress relief as I am no longer keeping all of it bottled up. I am thinking about it, writing it down, and in that process giving myself permission to let go...

I have worked in the area of social work, special needs, teaching, and assisting other families with children who have unique medical and developmental challenges my entire adult life. I have always loved what I do and found that in working with families, I have a lot to offer. Experience and knowledge... Advice and understanding... Empathy and another way at looking at things... Sometimes I think I do better in helping others to understand their circumstances and look at them more positively, than I am able to assist myself in that same way. This is where I have ALWAYS lacked. Now that my daughter has reached adulthood, I find myself in a completely different position. I have slowed down tremendously on advocating for others, although I still do from time to time. God has allowed me to turn a different page, and I am grateful. My energy and my time now goes almost exclusively into my own family, and the benefits have been great. I realize what I have missed out on over the years. I am more grateful for the little blessings in life. I am able to see my own family in a more focused, concerted way and my positive decision-making skills have greater developed. For the first time, ever, we are truly living life~ one day at a time. It's a struggle, this not sweating the small stuff business. ;)

I have chosen to do this for me... Selfish, I know, but I really need to do this. I write for my own sanity, my own growth, and to once again~ relieve stress... In this process, my hope is that if someone, or anyone chooses to read it and gets something positive from it, then it has served it's purpose way beyond my initial expectations. :)