Kindergarten

Sophie is five years old, these have been some overwhelming years. What an amazing blessing she has been in my life, I love to watch her just be herself, and I bask in her light. I never imagined this child whom I was told would never learn or possibly even survive would not only surpass what the doctors claimed her limitations would be but would be such an amazing individual.

Being five also brings with it the commencement of what should be the beginning of Sophie’s  primary education. We had hoped that she would have the opportunity to have that education in a school where she could share all of those new experiences with other children. But as I have learned there are some things in life we just have no control over.

When the doctors prohibited us from even considering school I was devastated. For a long time I was afraid of the idea of sending her to school. I was afraid of what someone might do to her and I feared that she would lack the ability to communicate with me if something went wrong. But, in the last two years Sophie has blossomed in so many ways, especially with social interaction that it became so obvious that she would flourish if given the opportunity to attend school. Sophie loves being around people especially other children and while her development is delayed it does not inhibit her ability to engage.

During this last year I have tried to let go of those feelings of immense sadness knowing that Sophie will always have to be homeschooled no matter what. For several months I thought I was ok until I began to see photos of other children her age graduating pre-school and getting ready for that huge milestone of beginning Kindergarten. I haven’t even had the emotional strength to get her Pre-K cap and gown pictures taken.

As the days approached that day, the day she should be starting Kindergarten my heart sank a little more each day. I see her grab her shoes and gear up to leave the house but she does not understand why she cannot be included in all of the excitement. And it’s not so bad now because her little brother is home with her all day so she has a playmate. Next year her little brother will be in preschool and Sophie will not have that companionship, that day will be a very sad day. I worry about how she will adjust being alone for hours on end with no one her age to interact with.

To make matters worse school started three weeks ago and I am still dealing with the school to get her homebound services started. I have to say The Palm Beach County School System is a joke. Children with Special Needs are disregarded, their education is not important. No one does their jobs, no one returns phone calls and parents have to make big stink in order to get someone to do something.  it’s truly awful.

This whole situation is just very saddening and as much as I try to move on this subject has become very heavy on my heart.

Out of mind, it’s just impossible.

Recently I started trying to move on from my harsh reality, thinking that if I put all the awful things I have to deal with out of mind that I could somehow function better. That, somehow the breath-taking pain would not be so overpowering. I was wrong. It’s not possible. Moving on from the focus of having a child with special needs is really hard because those “special needs” affect life’s everyday functions and as much as I can try to make it seem as if it’s not there and it’s no big deal the reality is that it is there and it is a very big deal.

Sophie has made huge strides in the last year cognitively, she is amazing us everyday. She understands so much and is so present in so many ways, learning to participate in daily functions with more ease. One of the biggest challenges I am facing with her right now is the fact that she wants to participate in those functions that she sees everyone else incorporating in their everyday. She want’s to go outside and play, every time we grab our shoes or keys she’s at the door. She knows that she needs her shoes to go out so she runs to the closet to grab her shoes and takes them to whomever is around to get them on her.

The challenge is that she does not understand why she cannot participate in these daily functions. She doesn’t have the cognitive capacity at this moment to absorb the fact that she could die if she is exposed to certain bacteria. She just knows that she wants to do what everyone else does. And she is determined, she will stand at the door for hours if necessary to get her point across. It ultimately ends with a twenty or thirty minute car ride because I do not want her to feel completely left out.

How can I keep these things out of mind? When I try to coordinate something for my family my first consideration is how can we include Sophie and many times it’s just impossible. Recently I have had to turn down birthday parties because they are held in places that are considered death traps for Sophie, (check-e-cheese, for example). It’s not fair to my other children but there really is no other option than to decline these invitations.

And then there is her health. I put off doctors appointments for some time because we just needed a break, she has been doing exceptionally well except if we skip a day of antibiotics. She has gained weight and looks amazing but the reality is she is a sick child. I tried to avoid thinking about that and then I took her for a follow-up Pulmonary visit. The visit was good, the doctor was happy with how she looked physically and her lungs sounded pretty darn good despite all she has to deal with. This is thanks to her compression vest, I love that machine.

Then we talked about that dirty little disease that could take my daughter’s life, PCD. We talked about how important it is to begin to track the deterioration process and we will have our first comparative scan of her lungs in a few months on our next follow-up. We talked about how critical it is to slow down that deterioration process because if she develops Bronchiectasis there is no going back. The only thing that would save her would ultimately be a lung transplant and the HARSH reality is that this world discriminates against individuals with special needs and no one would perform an organ transplant on an individual with special needs because they are not deemed productive members of our society. As disgusting as it is to deny someone life it is reality. I could see the sadness on her doctors faced as we discussed this dirty truth.

My truth SUCKS. My reality SUCKS. Trying to live my life with all of this out of mind is impossible, I try my best to hold it together but sometimes I just have to give in. I have to scream and cry and feel Just to find the strength to keep going everyday.

Moments like these I hate Cri du Chat Syndrome, because this disorder is the cause of this lung disease and all the other medical complications my poor innocent sweet girl has to live with.

32 Pounds!

32 Pounds is what Sophie weighed today at her checkup. I was so excited! Dr. Nieves gave me a huge high-five. Keeping weight on this child has been such a challenge, seeing her maintain her weight and steadily increase is such a relief and a blessing. She is 3% for weight and 10% for height on a typical child growth chart, that is awesome! She is on the charts and has remained there, huge win for us. Stronger Sophie = Stronger Body = Better chance of fighting off bacteria. 

I am a little behind on doctors appointments, life has been so busy and I was just putting them all off, honestly; I just needed a break from it all. Sophie is doing really well, we are keeping her stable with all her meds and with isolation. As hard as it is keeping her home all the time we are adjusting, knowing it is literally keeping her alive is enough that we just moved on and just put that whole reality out of mind.

Dr. Nieves was there for my daughter’s sweet sixteen several weeks ago and spent the evening observing Sophie interact with everyone and is astounded at her developmental progress despite all the challenges Sophie has had to overcome. It’s so awesome to have the support of such a wonderful human being, and we are so lucky to have her as the head of Sophie’s medical team.

The only issue we came across is that now that Sophie is growing and getting pretty tall at almost 42″ her scoliosis is becoming visible, which means we will have to watch it closely. It’s hard to swallow that my five-year old already has noticeable scoliosis. Heart breaking, DAMN Cri du Chat Syndrome! But we will take it one day at a time and do whatever is necessary to help her and give her the best treatment possible.

At the end of the day the good news out weighed the bad and I will take it as it is. Nothing will break us or our positive attitude for life.

CLICK HERE For a short video of Sophie in the waiting room today, she is doing phenomenal!

 

 

My normal

Sometimes life throws us in different directions, sets us on a path we never even considered taking. For me the game changer  was Sophie, my precious little girl, born with Cri du Chat Syndrome. I’ve talked about how hard it has been to adjust to my new life as a mother to a child with special needs and about my struggle to find my balance. It wasn’t until recently when I began the journey of finding my true self, without the mom or wife in me that I began to understand myself better. There were changes I began to make that would lead me to the place that I am now.

Letting go of the fear that my daughter can die was probably the hardest part of my emotional growth and one of the hardest fears I had to overcome, and although those fears are still somewhat present they no longer consume me. And in the process of letting go of those fears I found that I needed to pull away from certain connections, and so I did.

I found that being reminded that my child has a disability, constantly, was not healthy for me. Sharing her journey is important because through her I have had the privilege of helping others come to terms with acceptance of a loved one with special needs, and also because of her medical complexities she is a superstar in the medical field. There may one day be answers to questions that today go unanswered because of Sophie.

All that being said I don’t want to turn on the computer and see “SPECIAL NEEDS” plastered everywhere. Yes I want to raise awareness but I’m tired of the labels. I’m sick of doctors appointments and constant reminders of what my daughter can’t or is not supposed to do.

Instead I just want to live “My” normal life, I want to watch my daughter laugh and play and learn without the reminders that society does not deem her as an equal to those of us considered “typical”. Especially when the reality is she is stronger and has more determination and dedication than most of us. She fights to live and learn everyday despite how hard her body tries to shut it all down. I don’t want to think about how portions of her brain do not function, instead I only want to focus on the fact that is learning more and more each day.  I don’t care if it has taken three years to reach a milestone, the important and most valuable lesson is that despite the odds SHE DID IT and IS DOING IT!

All I want to think about is how beautifully she IS flourishing,  her brain is working. She knows enough to stand on her tip toes and try to look through a hole. She can use her hands to respond to you if you ask her if she wants something. She can hold your hand and take you to an item she wants. She can tilt her head back when asked in the bath tub when her hair is being washed. She can give you hugs, kisses and holds your hand, waves bye and will call me momma if she wants me. She will run and stand by the door at the first sight of me grabbing my shoes, keys or purse just waiting because she wants to go with me. There is truly so much I would love to brag about right now because I am so proud and because I see Sophie  for who she is, my daughter. But this would be a post with no end so I will keep it short. She is here, she is present, she is growing and learning. That’s enough.

At first I felt a little bit of guilt when I realized how much at piece I was without all the reminders, I felt bad thinking I wasn’t doing my part on raising awareness but I am. I am my daughters voice, I have this blog and I educate anyone whom I have the opportunity of educating. I may not stand up in front of thousands but I do enough and wanting the privacy and disconnect to move on to a better place is ok. If I am at peace and happy I can be a better mother, and that is my ultimate goal.

When I was afraid.

There was a time when I was so afraid of the unknown that it consumed me, while I don’t live in that place anymore keeping the fear away will always be a work in progress.

When Sophie was diagnosed with Cri du Chat Syndrome I went through several phases before I reached acceptance. My first struggle was with denial, I just could not believe that this was happening to me. I did not want to have a sick child or a child with developmental delays. I was mad, mad at God and the world. I felt betrayed by God, I screamed at him a lot. I broke up with him, turning my back on my faith not understanding why he would do this to me.

With time that anger turned to fear, the anger began to dissipate very slowly and I began to breathe again. I became obsessed with the syndrome, I think deep down I was searching for answers as to why this had happened to my daughter, to me. I eventually realized my questions would have no answer that would satisfy me and I had to let it go.

I remember reaching out to a handful of parents via email when Sophie was only a few months old. Some responded, others did not but those that did respond were honest and through their words I could feel their pain. It scared the hell out of me. I was already scared of the unknown future that awaited me but now knowing how hard it could be terrified me. I never responded back to those parents because of fear. Later life would lead me to meet some of those parents face to face, the ones I had reached out to but never responded back too. And, they remembered me. I felt embarrassed that I never responded back to them after they took the time to write me through their pain. For that neglect I am truly sorry and I thank them for being so honest and letting me into their lives.

Now I am one of those parents. My daughter is growing older chronologically while her development is growing more and more delayed with each day. And it is HARD. But, the fear I had was so much worse than what my future has turned out to be.

When I was afraid it impeded my healing process. When I was afraid it shadowed the possibilities that lay ahead. I am no longer afraid. I have fear but am no longer afraid. I moved passed it and have hope, I refused to allow myself to be afraid all the time.

When I was afraid I wasn’t living, I was wandering through the dark searching for a glimmer of light. When I refused to be afraid for the rest of my life the light began to shine into my life again.

I am no longer afraid, it was not easy but I learned to accept and overcome my circumstances. Being afraid will only destroy you, I won’t let it destroy me. Ever again!

Sophie, your 5

Hypnotized by the SunSet. God is smiling upon her.

Sophie, you are 5. Five years old, it feels like just yesterday that you took your first breath. You have amazed me and all those who have been lucky enough to be a part of your life.

You have taught me the meaning of True Unconditional Love. You have taught me patience, acceptance and equality. Because of your existence I can now see the world with clarity, the bad with the good. Fighting for you has taught me the true treasures of life, family. For there is no greater love than the one a parent feels for their child. I love you with the same force that God loves us, his children.

You are a gift. You are my symbol of hope, my inspiration. Your family loves you more than words can describe. You leave an everlasting imprint on those who open their hearts to you. You are loved by so many! You are perfect, as perfect as each one of your brothers and sisters.

Five years. Five amazing years full of tears and laughter. I pray that God allows you to celebrate many, many more years to come, my beautiful little girl.

I love you!

Happy Birthday.