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."
Have you ever spoke some thing aloud or even meditated on them in your mind so much and it actually came true? Seriously, take a minute to reflect back on something you may have said or thought and eventually it actually happened! Some like to say it was coincidence, luck or what have you….
Well, I want to tell you a little bit about my pregnancy story. In 2009, I was diagnosed with PTSD from the Iraq War and on a lot of medication. I would cry often when I wasn’t in a zombie like state and whisper, “I don’t want to depend on this medicine for the rest of my life! I lost mobility in my legs and had to learn to walk with a cane and braces on my knees. I had just become comfortable in the Zumba classes that I was attending 3-4 times a week. I had grew to love class, because when I walked in the doors for one hour the vibes put me in another place mentally. Well, as I went to physical therapy and gained some strength in my legs; I’d go to class with my cane and attempt to modify the moves. I even had braces on my knees. Can you imagine doing Zumba like that? I felt weird until I had the story of a lady getting her Zumba license and she was in a wheelchair! My highest weight had been 213 and it seemed like I would get stuck between 189-198. I would always say,”lord let me just lose weight so if I can still have kids, when the time comes, I won’t have so much to lose after the delivery.” I spoke this a lot y’all.
Fast-forward to 2012, I moved to New York weighting 193. In August 2013 a friend of mine from back home was doing a business with some homemade natural bath products that help you lose weight. It was a scrub, a shower gel and firming lotion then a supplement you would take 3 times a day. Well, the supplement would change as you stayed with the program and I was food journeling and everything! By March Madness 2014 I was 163 pounds!!!
I was so proud of myself and only to find out a few weeks later that I was 8 weeks pregnant. Talk about the shock and numbness as well as slight disappointment.
I know, I know why be shocked when you know you been getting it in right…. Anyway, that’s a whole other conversation. Back to my point. I wanted to experience pregnancy being a married woman. Although engaged at the time, we still weren’t married. I was numb because I had stayed focus on releasing the weight and forgot all about what I had asked The Most High for all these years; 1) a male child, 2) to release some weight so when the time comes for my son, I wouldn’t have so much to release after birth, 3) not to be on the medicine for the rest of my life. Indeed my doctors took me off all medication. The disappoint stemmed from me feeling like I had let myself down by the promises I’d made to myself for my daughters. I wanted to show them something different, a two parent family life. To magnify the disappointment after finding out I was pregnant, my oldest daughter called a few days later to tell me she was 6 weeks pregnant! What the world was going on. I never wanted to be walking around pregnant when one of my daughters were pregnant too. Oh my goodness lol! I can laugh now but then it was no laughing matter. I struggled with trying to be supportive of her as her mother and living 8 hours away plus the complexity of my own situation and struggles with depression. Even in this particular situation, I had forgotten something that I asked the Most High….I prayed for my daughters not to be teen moms like I had been. She was legally grown and going to bless me with my first grandson six weeks after I birthed her little brother. Both of my daughters were adults when they began to create a family life of their own.
There is power in our words and our thoughts and they do come to pass. It doesn’t mean it will always happen in our timing but it will manifest. Chose you words wisely and be mindful of your thoughts. Detox your mind, body space and soul.
Going on vacation was very hard for us, one moment we are ready to go, and the next we are changing our minds. We changed our minds because we weren't ready to deal with the staring that came with my son Jaylen and his dad whose and amputee.
Often I talk with other families who have the same fears about going in public with their loved ones who are different. The commonality is, we would rather stay home and avoid the drama of being looked at funny by those who are ignorant.
Now that I've jumped off the ledge and decided that I would no longer live in fear, my family and I enjoy family vacations. I know use my experience to show other families that it's ok to take your loved ones out in public without fear.
It was about three years ago when we started going places. I’ll never forget our first vacation. We went to the Great Wolf Lodge in North Carolina. This place isn’t very accessible but there is plenty to do. We decided to go here because our kids love water especially my son and it’s an indoor waterpark. I hate being outside! (lolol)
Unfortunately, we still got the stares, however, when we were in the waterpark the attention wasn’t on us which allowed us to enjoy ourselves. The experience was amazing, and we have gone there every year since our first visit.
Our second vacation was at the beach. The experience was not as good. We quickly found out how the beaches aren't the best for wheelchairs unless you have a chair with wheels that can tread sand. To get Jaylen and his chair to the beach near the water, we had to carry him and that heavy ass wheelchair to the beach. By the time we got there, we were bombed. You know how the sand can take a toll on you when you’re walking through it. Well, imagine walking through it carrying a sixty-pound boy in his wheelchair.
hen we got by the water people were staring at us hell we just carried a wheelchair with our son in it so yeah getting looks was inevitable (lolol). We just focused on enjoying ourselves and not on the people wasting their beach time looking at us.
Now, in current times (lolol) some beaches now have beach wheelchairs that you can rent when you go to the beach and there are a lot more accessible beaches. So, You can also purchase wheels that will handle sand so that you don't have to change chairs.
My overall advice would be, when looking for places to visits don’t think about what others may think, don’t think about how people may look and you may even run into some problems HOWEVER don't let that dictate the fun and memories you will create with your loved one with special needs.
Being a parent to any child is hard but being a parent to a child with special needs is sometimes harder. Especially when you have more than one child and the other children don’t require as much attention as the child with special needs.
The only time I have trouble trying to balance out time is when my son is admitted into the hospital. That's when I feel my worst. It makes me feel as though I’m a bad parent because they all need me. Even though I feel my worst, my girls understand that their brother requires a little more attention because of his (dis)Abilities.
When Jaylen is feeling his best we are always busy doing things that our entire family can enjoy together. Our girls love including their brother in any and everything even when we're just doing things at home. We do make time for the other children to do typical activities without modifications so that they can feel their lives don't always have to be altered because of their brother, Jaylen.
We love to go to amusement parks for the rollercoasters. Jaylen love rides and doesn’t seem to be afraid of anything. Our girls also enjoy rides to so it’s always a win-win situation.
Our family, in a nutshell, enjoys being around each other and doing things that everyone can do.
Sometimes we often think that once we have a child or inherit the responsibility of caring for a loved one, that life is over! That is so not the truth. Your life is actually just beginning.
Children and those with (dis)Abilities have a different view of life. They don't take everything seriously and they are transparent. We have diluted everything down as well as made everything stressful. We've stopped living and allowed the thoughts and perceptions of others to drive our lives.
The beauty of caring for children or someone with (dis)Abilities is seeing the world from a different perspective. The perspective of love, peace, tranquility, harmony, and more importantly HUMANITY. We are in a world that's built on microwave lifestyles and we forget about the human piece of life. We are popping pills to stay sane, driving ourselves crazy and blaming others for our own insanity.
We've ignored the beauty in what's around us. We argue over the difference in cultures and which is better than the other. We are focused on building lives on quicksand and not concrete.
We are so delusional about life. We don't respect what this life has to offer. We want things the way we want them no matter what. We don't give things time to organically blossom.
Children and those who are (dis)Abled understand that it takes time to build something solid and organic. They enjoy each and every moment life has to offer. We are the ones that put the limits on life when certain situations arrive.
Make sure to live each day fearlessly. The more you submit to life the more you enjoy the experience. We only get one chance at this experience, make the best of it.
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!
Let me start by saying that everyone needs a support system in their life. A support system is a network of people in your life who provide just what it says “support.” This can be in the form of emotional, physical, social or otherwise. This network of people are the ones who help you through times of turbulence, celebrate in moments of joy and are just there when you need them. Needless to say, when you suffer from Mental Health issues, a great support system is a must-have.
Some people are leery about telling people they know important details about their lives. The most important thing to remember about having a support system is to make sure it includes people who are really concerned about your well-being. A support system does not have to include family if they are not conducive to your mental wellness. Only people who are authentically concerned for you and want the best for you should be included in your support system.
People who are constantly negative, are never there when you need them, judgmental, slow to appreciate your efforts towards progress, or a plain hindrance to your goals should NOT be included in your support system. The whole purpose is to have the necessary support when the time comes. Some supports come in places you most likely have never thought of like church, work, social organizations, and your doctor’s office. Yes, your doctor can be part of your support system if they are the type who is truly concerned about you and are willing to help you achieve your best life. So basically, a support system can include a therapist, doctor, friends, family, co-workers, sorority/fraternity, church members, among others.
Get people who will sit with you and listen to you vent, someone who will help you clean your house if you need it, sit at the hospital with you, babysit your kids or even treat you to a spa day. The most important thing to remember is please make sure the people you surround yourself are truly in your corner.
After separating from Jaylen and Jada’s birth father, I’ve always thought it would be just us. I felt as though no one would accept that one of my children has with special needs. I also kinda didn’t want anyone to feel the need to take on the burdens I was carrying. What’s that says?” Love will come when you least expect ?”
In 2004 I lost contact with my high school sweetheart before graduating high school. In 2005 we reconnected through an unfortunate way. I found out he was in a bad accident which resulted in him losing one of his legs. We talked a lot while he was in the hospital. During that time he was in a relationship and so was I.
During this time I was on to having my 2nd child. Once I had Jada our phone conversations became more frequent. I even started picking Terence up to ride with me to take Jaylen to the doctor. He would even go with me to the hospital for emergencies. Terence was just there. Him being there made a big difference. One day while coming from the doctor he asked if I could see us being more than just friends? As bad as I wanted to say “Yeah” that day, I, instead said maybe! Well, I guess he had other plans, because, before he got out the car he kissed me! I never told Terence this, but that whole ride home I smiled internally lol. It felt just like it did when we dated in high school. I had butterflies all over again!
So you know that thing I said at the beginning about it just being me and my kids?! Terence became apart of the equation lol. Somehow I knew he would one day be my husband, however, I was still unsure of how he would do with my kids. When we went on outings I would watch how he interact with them. Terence was scared to interact with the kids, and I honestly didn’t want him too. Sounds crazy right?! After awhile he got use to the kids and they got use to him. Things seemed to be going pretty well. It wasn’t easy and it didn’t happen in a year, eventually started to bond.
In 2012 Terence and I got married and in 2014 Terence adopted Jaylen and Jada. In 2016 his biological daughter came to live with us. We became a happy blended family. Just from looking at us, you wouldn’t be able to tell that we are a blended family. Terence and I laugh all the time when people say Jaylen looks like him. But they also say Terence look like my Daddy.
Love will definitely find you when you least expect it. I’m not saying to date every man you meet and introduce them to your child, however, what I am saying is let love find you. Terence is the best thing to happen to us even though I don’t tell him that lol. And I feel like when we lost touch in high school it was only to bring us back together to be even closer.
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
When they invented the term “Busy
Bee” they truly had our daughter in mind. She is in constant motion from
the moment she pops her eyes open, until she closes them at night. To
most parents this seems normal and expected of any 10 year who enjoys life.
Our daughter has Spastic Cerebral
Palsy (it affects all her limbs) and Epilepsy that causes her to have
seizures. With these two diagnoses every day is blessing to have her
alive. Often, I think Diva knows she has many miles to go and not much
time to get it done which is why she is in constant motion.
As the mother to DIVA I must find
the middle ground of letting her be a free spirit and being “THAT” parent who
dishes out a stern warning to their child. So, what do you do? How
exactly should you discipline a special needs child? In our household we
treat Diva as if she was cut from the same cloth as her siblings. We do
not “dumb” down our conversations. We always make them age appropriate
for her. Minus a few slip ups.
We decided a long time ago that
Diva deserves to be treated with respect and with respect comes the time out
corner. The length of time for the corner is based on her age. So
now that Diva is 10, yep you guessed it she completes 10 mins in the corner
when she is out of order.
In “True Diva” fashion she complains and even pitches a slight fit, but she never leaves the corner and anxiously waits for the buzzer to ring. We use a buzzer to indicate when her time is up from activities. Initially Diva ignored it, but as time went on we were consistent and she finally got it.
As her parents we find those moments when our DIVA is acting because she needs a big hug and some calming music. I’ve questioned my self in those moments “Would I do this if she was typical?” The answer is I DON’T KNOW. What I do know is that for now I Love my DIVA and have my running shoes ready…However she always one wheelchair ahead of me.