Friday, August 28, 2015


This is a mom that I have recently been connected with through a national organization called Parent to Parent. Her son has the same thing that our son has. We spent a lot of time on the phone chatting about life with our boys. She recently shared her experience with Parent to Parent and has given me permission to share her story too.
Possibilities- By Alison Kandrovy

Imagine a world of possibilities. You are pregnant with your first child. So much to be excited about, to think about, and to plan. Your entire life is about to change but you couldn’t be more ready. You experience a pregnancy that is about as typical as a 7 day work week and you have no health issues whatsoever other than the occasional heart burn. At your baby shower, you are overwhelmed with all of the gifts for your new arrival and the anticipation and excitement is just an added experience to what is supposed to be the happiest time of your life. A new baby to love. Someone who will need you and love you unconditionally. Someone who will count on you. You try to prepare to be the best that you can be as you know you are going to be shaping your child’s life. 

As you dream about that wonderful world of possibilities – first steps, first words, building sand castles on the beach, first days of school, childhood activities, and making wonderful memories – nobody tells you about what could go wrong. 

When I was eight months into my pregnancy, I had a typical ultrasound done, no apparent reason, just as a policy with my OB’s office. During that ultrasound, the technician saw that the baby’s brain did not develop and we were told by the OB that our baby boy would be born “not compatible with human life.” No warning. No signs of anything ever being wrong. And in one quick second, our entire world changed. Through our complete and utter horror and devastation, we visited a high risk OB the very next day with intentions to terminate this pregnancy but instead we were told that our baby had hydrocephalus and that he would survive. During the next few weeks, we visited The Children’s Hospital of Philadelphia and were told one thing and then another. First that our child would have learning disabilities. Then that he would be perfectly and normally fine. Our beautiful baby boy was born three weeks later and although he had surgery at 4 days old and experienced a roller coaster of ups and downs, he seemed to be pulling through. We finally thought we saw light at the end of the tunnel. Then our worst fears were brought to light after 26 days at CHOP with our child in the NICU. He had the rarest form of hydrocephalus called X Linked Hydrocephalus, he would be a vegetable, and live maybe 1-2 years. Four days later, we went home and instead of experiencing joy and excitement, we had nothing except pain and no hope of a future. We had no choice but to prepare for the worst. 

That world of possibilities was a complete and utter memory. I couldn’t remember what happiness even felt like for months afterwards and I used to wish more than anything that it would all end. For a long time I didn’t leave the house. I didn’t talk to any of my friends, especially those who had just had babies of their own. I wanted nothing to do with other people’s happiness and I didn’t want to hear about what milestones their “perfect babies” were reaching. The only people who visited us were people from the hospice service that we were set up with. They were the only ones I wanted to talk to. Otherwise, my routine was watching my husband go off to work and then sit in my baby’s nursery and cry for the entire day. The worst part of the entire situation was probably the fact that I felt like I had failed my child by not realizing I was a carrier of the condition that he had and that not one single person in this entire world could ever understand how I felt. This type of thing didn’t happen to anyone else. 

Who else brought their baby home with hospice nurses and social workers there to greet you to try and make the pain of watching your child die over the next few years as easy as possible? Who else brought a baby home anticipating that no matter what you did for them, it wasn’t going to make a difference because at some point, this would all be over? To say I was angry was an understatement. I was robbed and defeated. I wanted to take my baby’s place and have him spared. I wanted someone to call from CHOP and tell me that they had been mistaken or that they got his medical records mixed up with someone else’s. Who could I talk to? Who could I turn to? I had plenty of support. But nobody who really knew what I was going through. Nobody who knew what it felt like. And with all the support I did have through family, friends, and hospice…I had never felt so alone in my life. 
Then one day I was told about Parent to Parent of PA support system. I was wary of support groups. I had gone to a post-partum support group for two sessions and could not relate to a single woman there. They had been depressed yet they had perfectly normal children. I couldn’t relate to what they were even depressed about. Maybe my story had made them actually feel better. There wasn’t much I got out of those types of groups. However it had been many months later, our baby boy was doing a lot better after a second surgery and had a better prognosis, and I was in a better place myself. So I decided it couldn’t hurt to give it one more try. I still didn’t know who would ever be able to relate to me though. This condition is so rare, who else would even have this problem? 

It turns out some other moms were out there whose child did have the exact condition as Riley! The coordinator of Parent to Parent of PA, Michele, found a match for me and I spent two hours on the phone one night talking to this mother. This mom hooked me up with another mom whose son had the same condition and her son particularly was much like my own – more on the moderate side. It is almost two months later and I am still in touch with both of these moms. Through this experience, I even learned a few things that nobody ever told us. This condition, like every other, is a spectrum. Some have it very severe and others have it moderate. Some walk and talk while others are non-verbal. Some pass away at a young age while others are older. When I realized what other moms had been through, I realized just how lucky our baby boy really was. So far he has defied a lot of odds against him. He showed all of the neurologists that told us he was going to be a vegetable that he was going to do what he wanted to do and nobody was going to tell him otherwise. I cannot tell you how wonderful it has been to be in touch with other moms who know exactly how I have felt. Even just to know that I wasn’t crazy! And to know that there really are others out there with their “one in a million children” who are the trail blazers and the warriors who will do anything in this world to ensure that their child has the best quality of life possible. These moms are heroes and warriors. I cannot say enough wonderful things about Parent to Parent of PA. They were diligent and consistent about sending me matches and truly wanted to reach out and help. They have hooked me up with moms I never would have met otherwise and therefore would not know these new things that I have learned. I never would have known there were other moms out there who knew what it felt like to truly be in my shoes. 

Since talking to these moms through Parent to Parent, I have started imagining a new world of possibilities – a world of support, help, and realizing the people who are truly going to be there for you. The possibilities of what our child is going to be able to do instead of what he won’t be able to do. The possibilities of doing everything that we had planned as a family, but having it be so much more worthwhile because we know things could be so incredibly different. We have the possibilities of giving our child a wonderful quality of life. I realize that these moms have done it. And we can too!

If you would like more information about the Parent to Parent organization please click HERE. If you are feel lost and alone and think you are the only one dealing with a certain disorder, they may be able to help.
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