Sonya's Story A Journey Through CDKL5: Chai Lifeline

Throughout our journey many people have offered us valuable advice. Multiple people told me to get in contact with an organization called Chai Lifeline. It is a Jewish organization that guides itself by understanding that when a family member is diagnosed with a terminal or serious illness, the child as well as the entire family "needs and deserves as happy and normal a childhood as possible".

I have to admit that when the first person told me about the organization my initial thoughts were, "Why would we need to be part of such an organization? How is Sonzee having epilepsy similar to a child who has cancer? I do not want to take away resources from other families who would actually benefit more from the services this organization provides. Sonzee is going to be just fine. We will be fine. Neither I nor we as a family need any help. Even if I do need help, I am not ready to accept that just yet."

The night I went to the ER with Sonzee because I thought she had a seizure; I did not even pack a hospital bag. To this day, I can honestly tell you I have no idea what I thought was going to happen when I told the hospital staff my one month had what I thought was now her second seizure and then proceeded to hand them the video evidence. I remember feeling as though this was not real, this could not be happening. We only told family and a few friends we were even at the hospital. When she was diagnosed with seizure disorder, it started to dawn on me that this was something we would have to share with others. However, I honestly did not think at the time we needed any special assistance.

After we received the official CDKL5 diagnosis, again more people told me to reach out to Chai Lifeline. It was only after a person I did not know commented on a blog post that I seriously entertained the idea of reaching out to the organization. I finally called the phone number provided on the website for the west coast office. I remember how awkward I felt as I gave my brief introduction and told them a little about Sonya. Each person I spoke with was so attentive and helpful by simply listening. I remember when I told the director that I honestly did not know what my purpose for calling was, but that so many people told me I should. We agreed during the call that it would be okay for her to hand our file over to a case manager, and she told me I would be contacted shortly.

I have spoken with our case manager a handful of times. She understands when I do not answer the phone, when it takes me a week or so to call or text her back, and when it takes 3 weeks for me to email her. She is beyond amazing when I think of how hard I have made her work to get a hold of me. I would assume that is what makes social workers amazing people as they just get it.

During one of our phone conversations, the term "Chanukah Angels" came up. Until yesterday I did not have a complete understanding of what exactly those words represented. She explained that "Chanukah Angels" is essentially a program designed to take the stress away from parents who are dealing with their children's health issues by not having to think about gifts for their kids, and to make sure siblings would have a fantastic Chanukah despite whatever craziness is occurring in their lives. I thought the concept was nice, so I agreed to be part of it. Fast forward to yesterday morning when the doorbell rang and a young man was at the door who said he was a volunteer from Chai Lifeline. He said he had gifts to deliver from the Chanukah Angels and I looked down by his feet to see large paper bags. My jaw dropped at the amount of bags I saw.

Immediately the tears came (shocking, I know). I am still processing all of this, and am in sheer disbelief. I cannot even properly express my gratitude. It is not even about the gifts specifically. It is about all of those who took the time to make sure ALL of our children will feel special. It is about the smiles on my oldest kids’ faces when they saw the presents sitting on the counter when they got home from school. It is about realizing that maybe I do need more assistance than I ever imagined I would. I can admit that concept is not easy an easy one to acknowledge or to accept but it is OKAY. I can also admit without these Angels, there would not be this many presents in our home.

Since I have been an adult I have tried to keep the essence of Chanukah based more around tradition than the physical gifts. I am always afraid of our children growing up to feel entitled and spoiled, so I prefer to limit items that are not educational or "serve a purpose". The Hebrew word for Angel is "Malach", which actually means "messenger". There is some thought that a few angels have the job of taking our prayers and giving them directly to G-d. This is one of those weeks where I feel Sonzee has been sent to us as one of G-ds personal angels, her purpose to take us back to the basics. To help make sure Sam and I have our priorities straight. To make sure we are paying attention to each of our children's needs. To make sure we are appreciating the simple things in life.

Yes there are gifts are on my counter that probably Sam nor I would have purchased for our children, simply because "they would be a waste of money", or "because they are unnecessary". I will go out on a limb by including Sam in a "we statement", by saying, we both never considered the smiles or sheer joy that these gifts would bring to our children. We just did not look at physical gifts in this type of manner.

When I look at my counter, I do not see just simple material gifts. What I see are packages that were handpicked, wrapped, and sent to us by people who truly want to make each of our children feel special. What I see are my prayers to make my other children feel included, feel loved, and not feel forgotten heard. I am so excited to see what each of these gifts are and to see the joy they are sure to bring each of our children as they open them and use them. I have never been more excited in my life for the first night of Chanukah, and that is all thanks to Sonzee who has brought us these amazing Chanukah Angels.

Thank you Chai Lifeline. It is difficult to put into words my gratitude, but please know you have successfully completed your mission.