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CP Mom

Being a Special needs mother, and the difficult times I've faced,and the situations nobody wants to talk about

Ten Years Strong

Who would have known that this day would come? Who would have known that I would have a 10 year old son? Who would have known that the baby boy I gave birth to 10 years ago would be celebrating his 10th birthday? The baby that doctors said wouldn’t make it through the night? Who would have known? If you had asked me this question back on February 4,2006 I would not have known that we would have made it this far. My heart is overwhelmed with pure joy, for the blessing of this child into my life. This child who has taught me more than I could ever teach him. This child that has shown me how to fight, how to never give up. This child that has shown me the true meaning of life, love, and happiness. This child that has shown me that their are no limits on what you can do. This child that has been through more in his ten years of life, than I have in my 31 years. This child that has been my biggest superhero.

Often times I have hung my head, I have wept at the many things that I was/have been told by healthcare professionals. That my child would not be able to walk, talk, and other things. No he can’t walk, but that hasn’t stopped him/us, yes he can talk. He talks more and more each and everyday. He has friends that care about him, he understands his surroundings, he expresses his wants, and needs. And guess what, he also knows how to be a typical kid(stubborn,moody,attitudes), and this lets me know he is like his peers in more ways than I knew. It has been a tough road for him to be the child that he is today. I say Job well done Braden. Great job Braden.

Braden I love you with all of my heart. You have made the proudest mother ever. When I look back on how far you have come I can only get filled with tears of joy, and happiness. I have not once given up on me, and I refuse to give up on you. We have so much work to do, and the best is yet to come. Thank you Braden for opening my eyes to see an entire new world. A world that I was unaware of, a world that looks beyond materialistic things, a world that you see the beauty within, not on the outside. Thank you Braden for helping me to understand patience. Mommy loves you so much!

Above all thank you Lord for entrusting me with one of your precious Angels. I am so blessed with the many things that you have allowed me to witness through this angel. I know that the Lord Giveth, and the Lord taketh away. Allowing me to be this child’s mother has been the biggest blessing any person could ask for. Through him I have seen your powers, I have seen your work, I have seen the impossible become the possible. Thank you Lord. May we be blessed with many more years.

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The question nobody wants to answer.

Often times I find myself wandering to the back of my mind, where it’s dark, and isolated, and I have this one BIG question that just keeps haunting me. I’m sure that I have continued to push this question further, and further back in my mind so that I don’t have to face the issue, or so I don’t have to deal with it, or so that I just don’t acknowledge it. But, just because I don’t want to deal with it, or face it, doesn’t mean that I shouldn’t get an answer for it. This question that I’m referring to is: What do I do when I am no longer physically capable of taking care of my spastic quadriplegic son with Cerebral Palsy?

Lately I have been getting smacked in the face with this reality. This is my truth. My son will be 10 years old in a few weeks. He is a growing boy. He is weighing in at almost 70 lbs, along with that he is very spastic. Which means he has an insane amount of muscle tone which makes him feel more like 90-100 lbs. I can no longer bathe him, and I’m almost to the point that I can no longer lift him by myself. This hurts my heart so bad. How can you look into your child’s eyes and know that the day is drawing closer that you are unable to care for him?

When asking this question to people who don’t have children with special needs they offer “simple” answers: 

  • God won’t put more on you than you can bear…..
  • Just do the best you can…..
  • Don’t worry about that now
  • Where their is a will their is a way.

And so on, so on. This isn’t like I’m talking about a goldfish here. I’m talking about MY SON, MY CHILD. This is a huge decision, and it’s not one that can be taken lightly. 

Choosing to allow my child to receive the best care possible may mean placing my child in a facility. It may mean having to relocate to a different state, so that he may get the care he needs. It may mean, not being able to see my child everyday. It may mean I will have to sacrifice both our happiness for him to get the care that he needs and deserves. But none of these things make me feel better about having to make a decision as drastic as this one. 

I know that I still have quite a bit of time before I have to apply any of this. But it helps me to talk myself through the realization of such a difficult thought. I know that I will be judged, I will be looked at as a failure, as a insensitive person, and a heartless mother. I know in my heart I’m the furthest from any of these things that I describe. 

My question has an answer I’m sure. I know that I’m not the first special needs parent, who has had to deal with this situation. So can I ask what others have done? How have other parents gotten through this? What steps are taken to prepare?  Please leave a comment.

#cpmom,#harddecisions,#lifewithcerebralpalsy

Surgery Day

Wow, so many things leading up to this day. When having surgeries it’s like your SuperMom mode button is on HIGH. You’re constantly thinking that you will forget something, which I’m sure I have. But that’s what we do as moms, we over think, we over do it. Last night I set my alarm to wake me up at 4:30 a.m. I knew that we had to be here at the hospital by 6:15. So when my alarm clock did go off I laid there………..(today is the day. Did I get everything, will this procedure run smoothly, will their be any complications, how will Braden be, should I take a shower or should I wait, will this be his last surgery for a while. How is Darius? I hope his fever is gone, I hope he is able to go back to school. I really miss him.)

All of these racing thoughts continued as I got Braden ready, and as I drove here. So we arrive here within 5 minutes from the hotel. It felt like the fastest ride ever. Once we arrived Bryan and Trish (Bradens dad and stepmom) were waiting on him. I felt a sense of ease when I saw them. Feels good knowing you have a support team. I really enjoy the relationship I have with Trish, she’s an awesome stepmom, I couldn’t ask for anyone better. She’s so attentive, so supportive, more than willing to help when we need it. 

We followed  our directions, and came to the level we needed. Then we were greeted with such awesome staff, I mean phenomenal. They were very enthusiastic for 6:00am. I mean to the point that I’m like how can you be this happy in the morning. That made another level of anxiety come down. We got Braden weighed, and had him placed on the bed. I answered questions from the nurse, from the pain management team, from the anesthesia team, and lastly from the surgeon. The way all of the staffed worked together just blew my mind. Very professional, very aware of their roles, and confident. This always makes mothers feel reassured.

Finally it was that time. The staff came down to get him. By this time he had taken some medication that relaxed him. So he was feeling good. They had this cute thing called a Bear Hugger that got his body temperature up to what they needed to before surgery. He just laid there looking so calm, so peaceful. 

 
Then it was time to say goodbye until later. I kissed him on his cheek, and said see ya later. I choked back tears as he rolled away. With 2 people on each side of him. He didn’t have a care in the world. As I was leaving out they told me it would be about an hour before they got started. So I went down to the cafeteria for some breakfast, and then came back up. At 10:00 I received a notification that the first incision has been made. I haven’t received any updates since that one, so I’m sure any minute I will get one. 

  
#cplife,#bilateralosteotmies,#cpawareness,#cpmom,#cerebralpalsy

Your Eyes 

While driving to and from work, and whenever I’m in a vehicle I tend to listen to K-Love radio. I love listening to this station. It empowers me, it motivates me, it inspires me to a better person day by day. This past week I kept getting hit with one song almost everyday, this song just kept speaking to me over and over.  It was as though every time I heard it I could take something different from it. I have always been such a big fan of Brandon Heath, all of his music is great. The song that I’m referencing to is “Give Me Your Eyes – Brandon Heath” , I’ve attached the chorus lyrics below:

Give me Your eyes for just one second
Give me Your eyes so I can see
Everything that I keep missing
Give me Your love for humanity

Give me Your arms for the broken hearted
The ones that are far beyond my reach?
Give me Your heart for the one’s forgotten
Give me Your eyes so I can see
Yeah, yeah, yeah, yeah

This song says so much. Each day we spend so much time wrapped up in our own situations, and never stop to look through another’s eyes. Over the weekend I kept getting so wrapped up into this song. I stopped and I thought about seeing through Braden’s eyes. Seeing through his eyes has to be the closest to heaven that can be possible. Looking through his eyes is seeing the world in a whole new light. Looking through his eyes their is no prejudice, their is no shame, their is no guilt, their is no jealousy, their is no criticism, their is no evil, their is no judgement. Those are the eyes that I want. WOW!! It’s almost breathtaking when thinking that something so precious, could have something that amazing in his little set of eyes.

I pray that the eyes of your heart will have enough light to see what is the hope of God’s call, what is the the richness of God’s glorious inheritance among believers

Ephesians 1;18

The Unspoken Bond

  
Their are many days that as a CP mom I feel alone. Today was one of those days. We had a family reunion today, and I had been a little nervous about it because I didn’t know how Braden was going to be. We have a reunion every two years (my Fiancé’s family). Braden is the only one in a wheelchair, and the only one who is severely disabled. Braden is a very strict creature of habit.  He likes to do the same things, very routine little guy, (mommy is too). B is always super excited about going places but he enjoys motion, he wants to be moving, whether it be rolling in his chair or riding in a car. He has to be moving. Which means either mommy driving or mommy walking him so that he will be happy. When we arrived at the family reunion B was happy, he saw some relatives that we see quite often and that are familiar with him, then little brother wanted to go down to the park area, so of course I roll B down that way so the whole situation is a win win. When it was time to come back up to the shelter Braden wasn’t so happy, I knew part of the reason was because he was hungry, so I fed him. In the midst of that my soon to be step daughter asked if I would fix her plate as well, I knew that I couldn’t because I only have two hands and I had to make a plate that me and Braden could share, and make a plate for my younger son. That bothered me a bit. I guess because I knew it was too much for me to do. After Braden ate he went into a melt down. Nothing could satisfy him, I took him out of his chair, and he continuously hyper extended on me (stretching his body outward), as he did this he would yell really loud, causing “The LOOKS” I HATE those. I asked if anybody had a blanket. I figured he just was a bit overwhelmed by all of the people, and all of the activity going on, so I got a blanket , had Shaun spread it out in a shady area away from everybody. I laid him on the blanket, and it took me a little while to get him settled down. But finally he became my little Braden again.

I sat and laid there with him. It felt nice, their was a cool breeze stirring, the trees were swaying, the birds were chirping, and the crickets were noisy. As I laid their beside Braden I just began to take it all in, I looked at what he looked at, I looked up to see his view. Amazing, what just a few yards a way from ppl can do for you. In that moment it was just me and Braden, it was me and my son bonding. I talked to him, he talked back to me, we laughed, I massaged his legs, I rubbed my fingers through his hair, I enjoyed HIM. He was so peaceful, I was so peaceful. Yet I felt so alone. I sat up and took a look at my surroundings, I watch the kids running and playing, I listened to my peers joke and laugh, while I sat yards away with my son. I wanted to joke and laugh, I wanted to have adult interaction, but with Braden I felt safe. Braden is my safe place. With him by my side everything wrong with the world seems so right. He is my rock, he is my source of comfort. After sitting out there away from everybody for about an hour, I guess our lack of presence became noticeable. It looked as though we were being looked for. I didn’t want to be found, or did I want to be found? Shaun came over a few times, to check on us and to make sure that we were ok, I appreciated that. I knew he was concerned, and I appreciated the fact that he went above and beyond to make sure both me and Braden were alright. I reassured him, and let him know that Braden just needed to get away.

This didn’t feel like a family reunion to me at all, but I guess more of a Braden Reunion. We share such a neat relationship. Braden isn’t very verbal, but he tries really hard. His vocabulary has improved tremendously, he works very hard. But communication doesn’t have to be something that you hear. Communication can be eyes meeting, its a feeling, it can be unspoken, but say more than any amount of words could. This is what me and Braden had today, and it felt so warming. As I sat there under the tree with my guy I felt so connected with him, while rubbing his legs I could see such a relief in his eyes that said “Thank You Mommy”, as I rubbed my fingers through his hair he would close his eyes for long pauses letting me know how good this felt to him. I rubbed on his stomach and we looked into each others eyes as though nothing else existed.

Braden has always been the type of kid to feed off of my emotions. If he senses my anxiety he becomes very antsy, if I’m a bit apprehensive he becomes the same way, If I seem calm and collective he embraces that same feeling, its as though we are still so very connected with each other. I know most parents call this a Mother & son bond, but this is different. This feels like some of our cords, and wires were never separated at birth. Over the years this bond has became stronger and stronger. Doctors and people alike ask me if Braden talks to me, and I say “Yes”. Braden talks to me in a way that only people can dream of. We communicate with each other through touch, through eye gaze, through the silence, through facial expressions,  this is all forms of communication for us. But at times we take these things for granted. I understand that their is a difference between verbal, and nonverbal, but I also know that a person can tell you so much about themselves without saying anything at all.

What are some situations that you all have encountered when going on outings with your CP child? Is their anything that really bothers you? Please leave me a note or a response. Thanks for taking the time to read.

The Flip Side

Today is a day that I have had mixed emotions about. This morning I sent my youngest son off to school for his first day, this is such a big deal for me for many reasons. Let me give you a quick glimpse, Braden my eldest son has Cerebral Palsy and he is 9 years old, so this is nothing new to me right? WRONG. Today is the day that I’m put on the “Flip Side”. Darius is a “normal” kid, so this means no special accommodations, no special treatment, no one on ones, no sneak previews, no VIP treatment. He will just be another kid in the classroom.

I’m not quite sure what bothers me the most about this. With Braden things were different, I was able to meet with his teachers and therapists in a conference before school started to make sure his plan was written out well, to make any modifications that may have been necessary, go over in detail how is hours would be spent inside the classroom, etc.  That isn’t how things went with Darius. I took off from work for a few days just so that I would be ok with this adjustment. This morning when I woke up I had so many feelings, I was anxious, nervous, scared. I was SCARED about my “normal” child going to school. This sounds so absurd as I write this. I didn’t get to meet with his teachers, or go and have a special VIP night with just him and his teachers.  I didn’t get to go over what he would be doing every hour while in the classroom, this was such a HUGE deal for me. I know that every mom must have these feelings with their kids going off to school right??  So why am I making this so difficult? Because this is a new experience for me, I now am on the FLIP side of things.

This morning, I followed the same routine that I do for Darius, as though it was just another day. But it wasn’t just another day, instead my little guy was starting Kindergarten!! I tried to keep things as “normal” as possible. I woke him up and gave him his chocolate milk, he gave me a big hug, and rubbed my head. I said to him “Are you ready for big boy school?” He just looked at me and shook his head yes. I just smiled and turned his favorite cartoons on, and went to pack his lunch. This was going to be a great day, I knew I was going to be fine. We both were going to get through this. I brought his clothes into his room so that he could get ready. Then it was time. It was time for me to get ready to embrace this new experience, it was time for me to accept this new journey, and this new chapter of my life as well as his. We went outside, and I pointed out to him the bus that he will be riding. We took a few pictures, and then it was time to load up, and head to his New Beginning.

  
Once we arrived at his school he was so excited, he kept looking all around trying to take it all in. He unstrapped his seatbelt, and grabbed his backpack and lunch box. I told him we have to wait for a few minutes, because we were early. I wanted to make sure that I was early so I wouldn’t let my nerves to get the best of me. I knew that if he sensed any nervousness from me it could have went bad real quick. I saw one of Braden’s old teachers, and yelled across the parking lot, she ran over and gave me a BIG hug, I was so happy to see a familiar face. Mrs.Davis was Braden’s assistant for 2 years while he went to that school. So she remembered when I was carrying Darius in my belly. She gave Darius a big hug, and told him how excited she was to see him, and that he is going to have a great day! I could tell this made him feel happy. We all walked into the school together, Mrs. Davis told me where his teachers classroom was. We had to sit in the cafeteria for about ten minutes. Darius was silent, I kept trying to talk to him to kind of see where his head was. He just kept people watching, and looking around to take in his new school. I could tell he was nervous because that is the only time that he is quite. He is a lot like myself, if he is unsure about something he just keeps quite, and observes. It became time for us to walk to his classroom.

“Deep breaths momma, Deep breaths.” This is what I kept doing, I couldn’t let him know that I was a nervous wreck inside. I had to keep strong for the both of us. His classroom was a short walk around the corner, we walked hand in hand to the room, his teacher greeted us with a big smile, and gave Darius a hug, and told him how happy she is to have him in her classroom. This melted my heart, how exciting, how awesome to feel welcome. We found his cubby, where he put his backpack, she took his lunch and placed it in a basket. He quickly found his table with his name, and sat down. Each child had a container of play dough, he quickly opened it and went to work. I gave him a big hug, and let him know that he was going to have a great day. He kind of brushed me off, I thought it was cute. That let me know he was good.

  
As I drove home from dropping him off all I could do was thank God. He got me through this, I was able to face this big obstacle that I had been dreading since his pre school graduation. This is a new chapter in my life, as well as his life. I can raise my coffee cup and say “Cheers”, “Cheers to the Flip side.”

Can’t Stop Won’t Stop

I have been having the hardest time dealing with situations concerning the “Special Needs System”, its so broken, and so unfair. I hate it. Being a special needs mommy we fight battles that we have never thought about fighting. My battle has been with getting justice served for Braden. Over the summer he goes to a medical fragile daycare facility. This center works with special needs kiddos on may different levels, so that parents can work, and feel that their child is left in one of the safest places. Braden has been in this facility for a little over a year now.  When he went last summer he wasn’t their much, because he was able to spend majority of the summer with his dad and step mom. However he did go their during the school year for afterschool care.  I loved this place, I spoke so highly of this place, and recommended this facility to other parents who work and have special needs children. However this summer my world was turned upside down with the treatment of my child.

Braden became a victim of abuse and neglect. Braden was bitten a total of four times, scratched,and pinched. All of this took place under the roof of a medical fragile day care facility, that staffs RN’s, LPN’s, and SRNA’s. The first time that I became aware of Braden being bitten was when I had brought him home and was changing him. He had red marks on his arm, and a what looked like the imprint of a human mouth.  When I took Braden to the center the next morning I showed these marks to his Nurse who knew that these marks were consistent with that of biting and scratches.  They said that they would look over the video tapes to see what had happened.  I found out by the Nurse that afternoon that it was a child that had bitten Braden as well as pinched him and scratched him. It turned out that this child had bitten two other children that day as well.

  
The next incident I noticed was the following week, while changing Braden I noticed another bite mark, and a pinch mark on Braden’s upper thigh.  I was LIVID! How in the hell could Braden get bit on his upper thigh, and why wasn’t I notified of this? This made my blood boil. The next morning when I took my son in the center I presented them with pictures of the wounds that were on Braden. I was told once again that they had to look at the video to see what had happened. When I picked Braden up that afternoon I was informed that Braden was bitten yet again, by a different child this time but a child who also is in a wheelchair and they were laying on the ground outside, and the child rolled over, took a bite out of Braden and pinched him, and rolled back over without NOBODY seeing anything. The director said “It was just a matter of Braden being in the wrong place at the wrong time.” ARE YOU SERIOUS LADY, WRONG PLACE AT THE WRONG TIME. Let me just fill you in, my child CAN’T WALK. How can he be in the wrong place at the wrong time unless YOUR STAFF put him there? Those were the worst words I could have ever heard.

  
The third time Braden was bitten was they had FINALLY saw the child bite him. Braden was bitten my the same child that had bit him the first time. This bite took place on Braden’s chest, and skin was broken. I was ready to come through the phone. They said Braden was lying on a mat in the class with two staff members on either side of him, when this child ran over and took a bite out of Braden. How does that happen? How does my little defenseless child get bitten a third time?  At this point I was reaching out to everybody that I could. I posted these pictures to social media. I wanted help, I wanted justice to be served, I wanted other parents to see what I was going through.

  
The fourth time that Braden was bitten I was at my wits end. It was the same child that had bitten him twice. By now I was feeling so defeated. Hadn’t I given the center enough times to get their SHIT together? I mean by now I had reached out to CPS, Social Services, the Inspector General, and the police, and the Corporate Office for the center. NOTHING had been done. I had shed so many tears, I had so many doors slammed in my face. Nobody wanted to deal with this situation due to its delicacy. Or maybe it was just too much work to be done. Finally the facility decided to discharge the child from the center, meaning he couldn’t come back. You would think I would be jumping for Joy, and elated. I wasn’t.

  
I wasn’t happy. I felt this isn’t right. How could this be right? Yes FINALLY action had been taken against this child. BUT, why was it allowed to go this far? Why did my son have to be a chew toy for this child this many times? Why did this family have to seek a new facility to put their child? Why wasn’t the staff more willing to accept their role in the way all of this played out? If it wasn’t for their lack of attention that child would not had bitten Braden. That child was only doing what the center had allowed him to do. So nobody won this fight but the SYSTEM. The system won. They can keep not paying attention, they can keep putting the blame on others, they can keep their jobs.

I will no longer sit back, and allow my child to be a victim. This is the only facility that takes special needs children in my town. So they know that I have no other place to take my child. How can this be right? I want Justice. I want options. I want the choice. I want to put a stop to this crooked system that doesn’t protect our children. Some parents don’t have resources available to them to be able to put up a fight. I will not stop fighting. This has ignited a fire within me. I need to hear from other special needs mommies. I want to know if you have ever been through any similar situations. Please comment. We have to be heard, our kiddos matter. We are their voices.

Rolling to the Beat….

  
Having a child with Cerebral Palsy you learn that some things you just can’t do, and other things you can.  Its hard at first, because not only are you trying to learn how to be a new mom but you also have to learn how to care for a child that has so many other issues. When Braden was released from the hospital and brought home he came home with a few attachments(heart monitor, and oxygen machine) So it took two people to carry him for the first 3 months. Close your eyes and imagine for a second, hold out both of your arms, now picture carrying:

  • Car seat
  • Diaper bag
  • Oxygen tank
  • Heart monitor
  • Purse

This was my world for a while. “Normally” people are so anxious to come visit your baby when you bring it home. I would have loved for my friends, and family to come and visit with me but that wasn’t possible.  Given Braden’s delicacy he couldn’t have visitors.  Instead he and I were put in isolation. He could only go out to appointments  which were like 2-3 times a week, other than that we were  stuck in the house.  Don’t get me wrong I understood that Braden was delicate so he had to be isolated.  However I allowed this isolation to consume me.

So many times I wished that I had a support group, I wish I had somebody to share these feelings with, I wish that somebody understood the heart ache that I was dealing with, I wish that I could just take all of this away.  None of those things happened. I was in this alone.  My world became me and Braden. NO OUTSIDERS ALLOWED. It came to the point that I didn’t allow anybody into our world.  At first it was lonely, but slowly I became comfortable with this decision. I liked not having to answer so many questions, I enjoyed not getting stared at, I enjoyed not having to explain the delays that Braden was dealing with, and the progress, that he had made.  It was so overwhelming trying to explain to people something they new nothing about. Hell, i didn’t know too much about it myself, because every day was a learning process. I became so complacent with our little world. Its not that I didn’t want to talk to people about Braden, but I came to find that during that time I just needed to learn. I had to learn acceptance, I had to learn patience, I had to learn that Braden wasn’t like other kids, and I had to learn that all of this was ok. Braden was/is special, he rolls to the beat of his own drum.

Fast forward to Braden in 2015.  He is a nine year old bright smart little handsome fella. He will be entering the 4th grade this year. He has had many ups, and downs as any kiddos with CP may have. He has had multiple surgeries, multiple hospital stays, multiple appointments, it just goes on and on. But guess what he’s still rolling, he’s still smiling,and he’s still laughing.  At first when God gave me this little angel, I was ANGRY, I was mad , I was mad at GOD, for putting such a HUGE BURDEN on me. It took me years, and many many tears to grasp the concept of having a child that is so delicate. The lessons that  Braden has taught me are endless, but one thing that has really stood out to me is being able to appreciate the small things. For example “normal ” moms may become irritated when their child calls their name over and over, however I am ELATED to hear braden say “Nommy, Nommy” (this means mommy) it took me over 7 years to hear him call my name. Braden has become such a big part of the community that we live in! Any time we go to the store, or go for walks in the neighborhood his friends come up to him and say “Hi Braden”, “Hey Braden”, and he just soaks up all the love and attention that he gets from his classmates, and friends.  I become so over joyed from him being so loved, and accepted by other little kiddos.

Its a new day and a new age when it comes to children with special needs. No more isolation, No more separation. All of the special needs mothers before me have really paved the way for special needs parents of today. And for that I am forever GRATEFUL.

#cpmom

#special needs

51 days

Who would have thought that giving birth was the easy part????

To me that was the easy part. Why/how can that be easy? I will tell you why. While Braden was in my stomach, I felt as though I had more control over the circumstances. I mean for all I knew he was a healthy little fetus developing as all babies do right? WRONG. I had what I came to learn after becoming pregnant with my second son an incompetent cervix (weak cervical tissue). My body couldn’t hold my baby inside of me. But how would I possibly know something like that? Like I said before in my first blog “Life Changes” I thought that my pregnancy would be just like what I saw on TV. So FAR from the truth.

Before I left the hospital, I had to give the Nurses a password.  This password would allow me access to my son.  I was free to call any time I wanted to check on him, and to see how he was doing. I was told by the lactation specialist that given Braden’s prematurity the greatest gift that I could give him was breast milk, also known as “LIQUID GOLD”  this would get Braden stronger, and healthy. I went to see Braden one last time before I left the hospital, and again I didn’t know what he looked like.  Too many objects distorting my view of this precious angel.

All of my family was so empathetic to my situation, but how could they understand what was going on inside of my head? I kept being told: “God only gives these children to special people”, “Be thankful that you have a child”, “He will be fine, “You gotta stay strong Tenia”, “You gotta be strong for Braden”, “God knew you could handle this.” SHUT UP,SHUT UP, SHUT UP,STOP TALKING, STOP TELLING ME THIS STUFF!!” None of these things were helping me. It made no sense at all. Nobody in my family went through this, so how in the hell are you going to tell me what to do?? I was alone, so alone. This is when the isolation began.  I distanced myself from family members. I didn’t want to be asked questions, I didn’t want to give answers.  Their were still so many things that I didn’t understand, and I had a long way to go.

At one week I was finally able to hold the baby that I had given birth to. “NORMAL” mommies can envision sitting in a chair with their little baby all swaddled up in a blanket, and kissing it and all of those things. NOT ME!!! This experience for me was wayyyyyyyyyyyyyyyy far from that. I went into the NICU, and looked at Braden, by now he had been moved into a cute little isollette ( a little cube). The nurse came over to me and said, today is a big day for you. We are going to try Kangaroo care, this meant me putting Braden in my shirt and having skin to skin contact. I was beyond happy, overjoyed!! They opened up his little incubator, and I saw the most precious teeny tiny baby I had ever saw. By now the blinders were taken off of his eyes. The wires were still every where, I stood their with my eyes big, and my heart beating out of my chest. I watched every little detail to make sure I wouldn’t do anything wrong, I opened up my shirt, and the nurse placed him so delicately on my chest. At that time I didn’t see any wires, I didn’t hear any beeping, I didn’t  see anybody around me.  In that moment it was just me and Braden, my son, my baby, my everything. I was in heaven. I slowly sat down in the rocking chair making sure I didn’t tangle any wires, or make any alarms go off. I was holding my baby for the first time. I was rocking my baby, MY BABY. I held him so close to my heart, I closed my eyes, and took a deep breath, and rocked him. This is what I had longed for. The day to hold my baby boy. What seemed like hours was only 8 minutes. “BEEP,BEEP,BEEP,BEEP” the alarms started sounding off, I snapped out of it.  Something was wrong, oh no, oh no what is happening, the nurses scrambled over to get him out of my shirt.  His body temperature was getting to low, I had to give him back. My precious moment was over, I watched as they placed him back in his little incubator and put heated blankets on his body to get him warm again.  I was in a daze. I felt robbed, I felt disappointment, I felt angry, this can’t be what new mommies have to go through. How could this be?

At two weeks Braden was transferred to UK hospital, due to his weight dropping, and his PDA not closing, Central Baptist Hospital’s NICU was not equipped to handle the fragility of Braden’s condition any longer. He had a quick helicopter ride over to UK. I had mixed emotions, I wasn’t 100% sure if all of this was good or bad. I had to let go and let God do his work. After he was their for a week Braden suffered a seizure, he contracted bacterial meningitis, he stopped breathing, he had to get spinal taps, brain taps, and the list goes on and on. It was the worst rollercoaster ride any parent could imagine. But guess what he made it, WE MADE IT.

51 days of going back and forth to the hospital 2-3 times a day, getting good news, getting bad news, and watching his progress, I was finally able to bring my little guy home.

  

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