On my 21st birthday, my birth dad, Big Daddy, was dying from cancer, we all knew that his day was number… One of my gifts was a dress that my dad's handpicked out for me, he had made me promise him that I must save this dress for something extraordinary and not for his funeral. A year and haft later, the first Mob-Con cocktail party took at the Mob Experience at the Tropicana was coming up. It was a perfect occasion to wear the dress. While there I met a man by the name, Ronald Fino, who later on give me a home when I need it. Now, I am proud to say that he’s my Dad, getting ready to adopt me as his own daughter, Amanda Fino. To me, my Dad did have a hand helping me beating my demos. Dad helped me embrace my cerebral palsy. He had sat me down, one day, to really explain what my cerebral palsy was and encourage me to be who I am and what I am today. To me wearing that dress, as my Big Daddy told me, was some kind of sign because I’ve met the man that God gave me as a Dad for taking my real dad to heaven too soon.
My TWO dad has been my greatest strength in my life. Happy Father's Day to both of my Dads! You guy's made me the woman that I am today! Like in the song by Will Smith ‘Just the Two of Us’ being with this dear and a beloved statement from Smith's son, Trey. Before the song starts, Trey says, "Now, dad, this is a very sensitive subject."
People always ask me, how do I do it? How do I care for Jaylen and make time for his siblings? Of course, it isn’t balanced HOWEVER, I make sure our girls know they are loved just as much as Jaylen. When I was pregnant with Jada, people wondered how I would care for Jaylen and another child? All I knew is that I was going to do it. There was no other option. At first, it was hard because Jaylen was in and out of the hospital often. I relied on my sister and Jada’s godmother to care for her while I cared for Jaylen. I was very thankful to have them but I also felt like a bad mother. I recall crying at times because I felt as though my baby wouldn’t even know I was her mother but at the same time, I knew she was in great hands.
Luckily hospital visits became less and Jaylen got better. Which helped my relationship with my daughter Jada and made us inseparable. Now the us today is amazing. My family is actually very tightly bonded because we’re always together.
My girls actually are very understanding of their brother needs and even helps out. When we go on outings they always ask if Jaylen will be able to participate. They genuinely enjoy spending time with their big brother. When we’re home it’s not just my husband and I keeping an eye on him it’s the girls too. They know when to redirect him when he’s doing something he has no business. They can tell by his screams what he want or needs. Jada can actually tell when he isn’t feeling good. I always say he has three mothers because the love they have for him and the affection they show him is the same as me.
Parents have asked me, ” how did I get my girls to interact with Jaylen the way that they do”? I’ve heard how some siblings don’t acknowledge their brother/sister that have special needs and that really breaks me. Those parents don’t realize that you can potentially cause a wedge between them. If you’re not spending time with your kids collectively and individually you aren’t able to show them how to include their sibling with special needs and to be there for them. Hell even I’m guilty of that at times but when I catch it I correct it. If I’m cuddling and kissing on Jaylen I can do the same with my daughters. Anything to let them know they are just as important as Jaylen is to us.I love my little family!
I just met a little boy while at work, who is 3 years of age and has Cerebral Palsy. He was crying. And the cry reminded me so much of my son D’Jonte when he used to cry at that age. It was a non-stop type of cry, and me rocking him with my knee or taking him to sit outside would always calm him down. Seeing that little boy and when his momma picked him up made me miss my son that much more. Before my son became so big I would carry him everywhere, man I wish I could just pick him up and hug on him right now.
I was touched so much by the little boy and his mother that I couldn’t stay around them any longer, I had to walk away.
I went back downstairs to where the children I was taking care of and I started to cry. Not a little tear but honey hardcore tears streaming down both cheeks, eyes hurting afterward crying. Not knowing why I was crying, I began to realize that I am so full of hurt, what ifs, regret, and guilt. I wanted to scream. I thought about texting or calling my husband or mother, but I am still shy or uncomfortable when expressing my feelings regarding my son and I knew that would only make me cry harder. So instead I pulled out my laptop and started typing away.
I love my son with all that is in me and I made sure he knew he was loved! But because I lacked the support and resources, therefore I wasn’t equipped with everything I needed to care for him medically.
I started a non-profit Their Voice of Greater Cincinnati last year and it wasn’t by my doing, it was all God. But it is my way of being able to equip those who also lack the resources to make sure that they are able to care for their loved ones at home and just in general. I want to make sure that they don’t lack the mental, physical or emotional support that is needed to care for your loved one with Cerebral Palsy or disability in general. I want them to have a place where they know that they are loved and that someone else gets it and understand what they are going through.
But knowing that this is my purpose it still brings me to my question of Why Me?
Working as a full-time nurse who takes care of kids who have disabilities is hard in general. Having this non-profit I have realized that I will be meeting a lot of families with kids just like my Tae and how am I going to be able to deal with it? Am I going to cry every time I meet a kid who reminds me of Tae? Why did God choose this as my life’s purpose? Am I really strong enough for what is about to come? He must have thought I could handle this or I don’t think he would have me doing this and he definitely wouldn’t have blessed me with my son. So all I can say after crying a river of tears is, I am ready Lord and I trust you.
These tears are what make me. Every time I shed a tear I feel that much more determined to help others. My son gave me my testimony and although at times I feel like I failed him, I promise I will not fail him again!
Please go to my website to learn more about Their Voice and if your heart leads you to, please donate to the cause, no donation is too small. It is greatly appreciated.
When I was growing up I faced a lot of curiosity regarding my disability and I would get asked several different questions by young girls my age one of them that I would get all the time is what happened to you ?.
As a child, I didn’t really know how to answer that question I would usually look at children confused like what happen to me I was just born this way and that’s the answer I would always give them
Then the questions would happen were you born in your wheelchair Do you sleep in your wheelchair? I used to get so emotional whenever these questions were asked of me as a child all the way up until I was in the fifth grade and I just got used to it .
But what I learned is to just explain my Cerebral Palsy to the best of my ability and hope they would understand my situation but my thing is explaining disabilities to children shouldn’t be as hard as people have given the tools now in days to do so.
As they are TV Shows like ABC’S sitcomSpeechless to bring awareness but we don’t have enough children based shows that talk about disability awareness .
as a whole series and not just one episode talking about that one character that has a disability in a one hour show maybe kids would know how to answer that question What Happen to you that way when people ask that question it wouldn’t make you feel as if you were not human I know for me whenever somebody asked that question as a kid it would make Me feel like I was an alien from another planet so and My personal opinion it is important that we educate our children of the future and our community to understand ways to approach children with disabilities ways to approach children with the disability when they’re curious about it because words can hurt
It’s okay not to be okay! A lot of parents who care for children with special needs suffer from depression and anxiety. The stress that comes from taking care of a child with special needs causes high anxiety, depression and sometimes PTSD.
Parents sometimes will not speak up about what they are experiencing in fear of their children being taken as well as the stigma that comes with the potential diagnosis. Parents may not even tell their family and close friends because they don’t want to be judged. Sometimes family and friends may think you aren’t stable enough to take care of your child.
Here’s great news, you are not alone. You are not the only one that suffers from anxiety and or depression. I try to explain what’s going on inside of my head, however, it’s difficult when you are explaining this to those who don’t walk my journey. This lifestyle that I lead is very stressful and the emotions are unpredictable and are a moment by moment thing. We could literally be ok and the next moment something could go left.
It’s hard to make plans while in this particular type of lifestyle. If you are able to keep plans, that’s considered to be a HUGE accomplishment lol. Typically, we have to depend on others in order to conquer the plans we’ve set and unfortunately, we all know how that is relying on others! Typically when we aren’t able to keep plans, it’s due to someone else not coming through or the child becoming suddenly ill forcing you to stay home.
Sometimes folks don’t understand why I have to cancel so soon and sometimes that causes me to shutdown. It’s not like I do not want to go out and enjoy myself, however, there are times when it just doesn’t permit.
What people don’t know is, each time Jaylen gets a new diagnosis, it sends me into a blank space and I am forced to work through it. What I’ve come to realize is, those feelings are okay to have and I should allow them to send me to a dark place. Now, I don’t stay in the dark space I just acknowledge what I am feeling so I can move forward with healing. I have to remind myself that it’s okay to be NOT ok.
It takes me time to remember that I have been chosen for this task and I have no right to quit as long as long as Jaylen isn’t quitting. Jaylen doesn’t allow his diagnosis to stop him, I will not allow my anxiety and depression stop me. I know with professional assistance I can conquer depression and anxiety. I encourage anyone that has depression and anxiety to seek medical attention so you can get on track and led a peaceful life.
Grief is a feeling of deep sorrow, especially that is caused by someone’s death. Why do we have to acquire so much pain from death? It comes from knowing that a loved one is gone. You will not be able to touch, hug, kiss or talk to them in the flesh. I could imagine the pain but I never quite understood it or truly knew what it felt like. That it was an unbearable overwhelming, can’t breathe type of pain. When I met my husband I learned more about it than I ever could imagine. And didn’t realize God was preparing me for that pain.
When we started dating in 2007, it had been 6 years since he had buried his 5-year-old son, who also had been diagnosed with Cerebral palsy. He would sometimes break down in tears, saying how much he missed his son. Of course, I would comfort him, but in my mind, I was thinking, “Dude really? It’s been 6 years why are you crying”? I am just speaking my truth because I didn’t understand that something so painful as the loss of your son could go on forever. I had never lost someone that close to me so I was oblivious to his pain. This is why it is so important for me to touch on this subject.
At one point or another, we will all go through grief. There are 5 stages of grief and they can come at any time during the grieving process. Grief doesn’t follow a timeline that is one thing people who have never grieved don’t quite understand.
Everyone grieves differently, but at some point, we will feel each one of these emotions. Although I don’t know if I ever felt the denial stage, then again maybe I have. I never could form my lips to say my son is “dead”. That just seems so final or made it seem real. So instead I always say that I loss my son. Just recently I have started saying he has “passed” away. 3 months after he passed away, I found out I was pregnant with my daughter. I remember looking at my mom and husband and saying, I have no idea where this little baby is going to sleep because she can’t have Tae room. I was in denial; I refused at first to move his things to make room for another baby. Moving his items would feel as if I was forgetting about him. As if I was trying to erase his memory and I couldn’t do that. Eventually, as my due date got closer I was able to rearrange his room for her. One side had his name on the wall and I refused to paint over it, so one wall had his name and the other wall had her name on it.
A lot of the anger comes from wondering what could I have done differently? Why did God take my son away? Why me Lord? And for me, I feel angry because at the time of my son’s death he was in a facility. I had told him in December that he was coming home soon but January he passed away and never made it back to our home. So I hold a lot of guilt, which can turn into anger for me.
Months later after feeling fine and going through life, the grief process hits you again. And don’t let someone who doesn’t “get it” come in contact with you when you are feeling any of these emotions, then they start to say the dumbest remarks, like. “ “He is in a better place” or “he was sick right”, or “Its been 6 months you still grieving”? “Think about the good times”
I get it you mean well, but sometimes being silent is more helpful than those comments. Seriously, and it’s not me being mean or sensitive it’s me being real. We don’t want to hear that our loved one is in a better place when we prefer him/her to be right here with us. We know we have great memories, but we want to make more! I want to hug and kiss on my son and tell him in his ear how much I love him.
People think that you only grieve right after a death and then it should be over. Negative! My son passed away 8 years ago and it feels like yesterday. That day replays over in my mind more than I want it to. The pain/ grief hits me when I least expect it. I can be driving in my car and bam, tears start rolling down my face, and then depression sets in. I can be cooking dinner for my family and then an overwhelming feeling of sadness hits me.
I cry, scream, pray and then the acceptance that my son is gone sets in. For me, bargaining usually comes around the same time as depression and acceptance. I ask God, “ Why couldn’t my son be here for me to live out my purpose”? “Why couldn’t he be here with me”? “Why did he have to move on for me to have a testimony?” “I wish his sister could have met him” etc.
So I am saying all this to say, grief has no time limit. I will always feel the emptiness of my son not being here and the pain in my heart. What I can say is, as time goes on those who have dealt with a loss, will learn how to deal with the grief better. Every day gets better, and you may go without any feelings of grief longer than before. I just want people to understand that they should always be careful with their words and be more sensitive to those who are dealing with a loss. That pain of a loved one is strong and it never goes away, some of us learn how to cope with that pain and others allow that depression to set in. We are all different and we all handle situations differently, so please be kind. You never know what we are feeling, just because we are smiling on the outside our insides are crying. Try to understand. Call us. Check in on us, especially on their birthdays, holidays and their anniversaries.
Grief is a forever process, don’t you forget that. The better you understand it the more you can help us. Don’t be afraid to ask questions, but do be afraid to say dumb remarks like the ones I mentioned above because we just might snap. LOL
GRIEF will forever change a person. Never expect them to be the same afterwards.
To learn more about how I have dealt with the loss of my son or my husband please order a copy of our book, “Life Before and After Cerebral Palsy, We Are Their Voices” Available on Amazon, Barnes& Noble, Google Play or iTunes