I am not okay. I have not been for a while. I am so alone. I have no one to talk to. No one to help with Logan. No one understands how I feel or what I go through. These past few weeks have been crippling. I hate that my child was born with cancer, I hate that he now has a brain injury from where the tumor was. I hate that he cannot eat by mouth and cannot talk. I am hysterically crying as I type this. I am exhausted, physically, emotionally, and mentally. I hate the fucking holidays…my kid can’t color eggs or go on an easter egg hunt. I am sick of being nice and putting on a front that I am strong, and everything is okay because it’s not. This is me; this is how I really feel and it fucking sucks! Yes, my son is amazing, he’s a miracle and has overcome every worse case scenario but that doesn’t mean it’s easy…. it’s not! I do not want people feeling sorry for me, I want people to have empathy and offer help. Whether that be an ear or sending wine or offering to watch Logan or give me a hand for a couple of hours. I’m just trying to let all my feelings out. This isn’t directed toward anyone and of course my husband is amazing. But I’m the one that handles everything (yes, I’m a mom and like to be in control). I schedule all the doctors’ appointments, therapies, evaluations, babysitters, etc. It’s on me. Luckily, I have a flexible schedule where I am able to do all these things but I’m exhausted. I just want my son to be normal. I just want him to eat and play and talk and run like every other kid. This is the worst I have felt in a very long time and I hate it. Every four hours I have to stop what I am doing to feed my son via his G-tube, most times it’s a straight up fight to get him to sit still while feeding him. He will bite, hit, pull my clothes or hair the whole time. I can’t let him just go outside and play with other kids in fear of him hitting or biting or head butting or pulling their hair. He’s super smart and definitely understands more than we think but the part of his brain that is injured regulates his impulse control which is where these issues lie. I can’t send him to a regular daycare because of these things. I can’t find help to come into the home because (1) I don’t trust people (2) Covid is still a risk and (3) the hiring pool is limited.
At first I wanted to write this to get it out, then to share but now I am afraid to share because for fear of being judged. Oh, she’s just looking for attention. Oh, she should just be grateful her kid is alive. Or…he’s so cute, he beat cancer, he’s a miracle. Just be happy….blah, blah, blah.
I love my son, I’m blessed and grateful to be able to be there for him as I am. But this doesn’t make it easy, it’s hard, it’s exhausting and I’m fucking burned out!
I’m allowed to have these feelings and I will get through it as I always do but I will NEVER get OVER it. We don’t plan for tragedy in our lives whether it be an illness, loss, etc. We can only do our best and put one foot in front of another and push forward.
You are either beside me or behind me helping me move forward. That’s all I ask. Patience, empathy, prayers and love.
Until next time….
It’s hard and you are strong even when you don’t feel you are. Let those feeling out, it’ll help up, at least in the moment. All you can do is the best you can at the moment. I wish I was close, I’d love to help you with Logan if I could. We’ve got you mama…always
If you are in need of a good place to vent your truth without judgement, I joined a group on facebook, Parents of Brain Injured Children. It can be a good resource for finding people who deal with what you do as well as a safe place to vent without judgment. I can usually find someone who has been through what I have been through there. It is a closed group for members only. Sending hugs, I wish I could come help with little man and take some of your burden away. Feel free to contact me if you need to firstname.lastname@example.org I can take all the venting you need.
Sorry the group is actually parents of children with brain injuries
I hope you know you can always vent to me and count on me for support. Yes, Logan is a miracle, yes Logan is cute, yes Logan fought cancer and won, but you’re human and you are left with the after mass and devastation of this horrible disease. You now have to advocate 24/7 for every single thing your little boy needs. You’re his voice! All of this is exhausting and frustrating. Logan is lucky to have you as his mama (and his amazing daddy too!).
Sending you all the love and hugs and know I’m here for you any time. Just call or text! ❤️
I have been following Logan since he was an infant and am always cheering his accomplishments. Clearly it is a tough exhausting road you are traveling with your family. I admire you very much. If I lived anywhere near you, I would help you in any way I could. I know that someday, we will see Logan eating and talking! He is clearly VERY bright. God Bless you and your family.
Your a great mom! One of the strongest I have ever seen! You have great family support but I understand being the mom and wanting to be in control. Stay strong I know you can do this is rough but even a child with perfect medical issues are not easy so I can’t even imagine what you are going through. You made this page to keep us updated on Logan. Logan include you! Feel free to vent, if somebody wants to say your using this for pitty that’s on them they can leave the page! Stay strong momma.
I am open for conversation! I actually have had a rough 20 years! My story will help you! You are not alone! I felt and still do feel exactly as you do! There are good days, then those dreadful bad days! Days of crying and many laughs! I’m here for you anytime! You are an inspiration! As exhausting as it is! ♥️♥️♥️ P.s. I’m also a control freak when it comes to appointments!
I LOVE that you wrote this post. Your pain is tangible. Also, thank you for your vulnerability. It’s important to not wear that mask all of the time that others believe you should put on. The desire to want normalcy for you, your child, and your family make you so incredibly human.
And, “the losses” day after day of what was, is, and what “won’t be” (*whispers yet*) is a painful reminder over and over again of the traumas all of you have been through. To say that it is hard to step away mentally from your situation is an understatement. I mean, I cannot say how many times I have seen my mother in your shoes, wonder, and cry, and fight for the survival of her children (2), with pediatric brain tumors/cancer. The desire to have us “just be okay,” waiting for the other shoe to drop, to have a break from scheduling rides, appointments, cooking meals, and more…are memories that I saw her transition through. So although it is a different perspective, I can reassure you that now as an adult child – you ARE doing everything right.
You know my situation. And, that I continue to counsel in the BT, neuro, and PTSD world…while, thriving and always, beating unimaginable odds. I know that one of the most depressing things is time and again, looking and feeling limited by the physical, mental, emotional, and very REAL barriers around. Please know that I am always silently cheering you all on and that I truly believe in my heart of hearts that eventually, all will creatively heal – in its own and unique way.
Remember, my table, heart, and ears are always open to you and your loved ones. No advice (unless asked for), no judgment. Burn out is a real thing. So, is R&R. You know how to find me.
Be Well, Mama.
I don’t personally know you and I’m not sure how I started following your page, besides the fact that I grew up in Burnt Hills, but I’m a special education teacher and I will happily give you respite time when school is not in session. I have taught special education for over 20 years and I currently teach ASD students K-2 grade. Many of which use AAC to communicate and have behavioral difficulties. My own children are of high school and college age and no longer need me all summer, so I could definitely devote some time to Logan and you. Please doesn’t hesitate to email me. Take care of yourself. I understand how hard it is for you on a day to day, and some days you may just feel like you are in survival mood. Just remember all that you are doing now for Logan at this young age will help him so much in the long run.