I apologize for this long post. I need to come forward with something bcuz first of all it’s a very a painful event for me and also bcuz it’s effects my everyday living.
Some of u have heard of a “family member” of mine (I’ve written about him). He is 6 years old and at the age of 2.5 he was diagnosed with a rare brainstem tumor, which caused him to have a tracheostomy to help him breathe, as well as being gtube fed and he uses a wheelchair/walker to get around. He’s been on n off chemo for 2 years also. Last year of chemo his tumor shrank by about 1/3. Now some of u may know this. But what most of u may not know is that he is my son. I have never spoken about a child on here. He’s an amazingly strong warrior and has taught me more about life in 6 years than my whole 37. My husband is the father of our son. I never did use during my pregnancy thankfully and my son was always well taken care of. Never went without anything. His play area is like a friggin Toys R Us lol Even tho my husband and I had issues with addiction, our son was never around to see it thankfully or exposed to it. I am thankful for that. When he was diagnosed I lived in the hospital with him for 6 months straight while he underwent his treatment plan. My son has no prognosis meaning we don’t know how long he will live. I don’t talk about it often to anyone but I’m emotionally struggling with it and have been for years. Part of the reason for my using was the pain I felt. Not an excuse but I didnt know how to cope. I grieve my sons death even tho he is still alive. But have taught myself to stay positive and live in the moment and to be grateful for the time I do have with him. My son is doing very well tho I mean for what he’s gone thru, he truly is doing well. He has his tumor still, his trach where he has lost his voice due to it, his gtube (he eats nothing by mouth) etc but we are making progress. I don’t work during the week bcuz someone medically trained (myself, my hubby or an LPN) needs to stay with him. I do therapy with him everyday now, speech, physio, occipational therapy. He needs 24 hour awake care. That’s why I only work on weekends while my hubby works during the week. So normally bcuz he needs 24 hour awake care, LPNs come into our home from 10pm-7am and stay awake with him in his room to provide medical care and take care of him on his ventilator.
Anyway, this all came about bcuz my sons nurse called in sick tonight and no one can replace her. This has happened before where I have been awake since 530am, only to have to stay awake allllll night, and then all day the next day while hubby works. So now I’m not only having to stay awake for more than 24 hours at least, but I can’t take my meds bcuz they make me tired, and it emotionally upsets me bcuz I don’t like being awake at those hours bcuz it reminds me of when I was using. My son is my biggest motivator to stay on the right path of recovery. I advocate for him constantly and do whatever I can do provide him the best quality of life that he can have, including a healthy mother. I’m glad he never saw us use but at the same time I felt like I wasn’t truly present in his life while he was being cared for. And I have tons of regrets over that and am so disturbed at how addiction made me so selfish. I blamed myself for my sons diagnosis thinking he was punished for what I had done in my past back home and leading the life I did. I have never mentioned this since I’ve been on TS. I just held onto it thinking I would be judged or looked down on. But my son always had what he needed, except for a present mother who got side tracked back then. But im making that amends and have been keeping those amends for over 5 months. I can’t hold it in. U guys are like family to me and especially now with having to do the awake overnight again, I’m exhausted from work, and I’m struggling to find some inner peace and I needed to talk about it. I just had to say something. I’m probably going to go off Ts for abit and try to rest before my husband sleeps and I have to stay awake all night. But I’m sorry I hid this. Often times when mothers on here would talk about their kids and the regrets they had I just wanted to tell them that I understand and that they were not alone. But I didn’t. Ugh. Again I apologize for my lengthy post. Goodnight TS fam
Dana, you don’t owe any of us an apology. We’re all here to support you no matter what. I’m just glad you got it off your chest and now you can freely talk about your struggles.
I have a disabled daughter and also have regret for not being fully present for her. I do my best, just like you, to make that living amends on a daily basis. That’s all we can do. Can’t change the past, right?
You’re one strong lady and now that I know you on this level, you’re my hero. Much love to you and your little family.
I just feel so emotional right now. My heart hurts for my boy and as much as I’m sorry that u have to feel this way too, I’m glad u can relate. U don’t know how many times I wanted to say something on here over the past 2+ years Ive been on TS but instead I suffered in silence when my son would go to chemotherapy and cry or the times I had to stay awake all night and struggle or the pain in feeling like the dreams I initally had for my son were ripped away due to his medical condition. And we just adapt and go with the flow but it hurts. Bcuz children are everything. And I’m sorry u have had to go thru this. It’s like a pain that ud never want another parent to feel. But ur right we can’t change the past. And ur an amazing mother and ur making that amends to ur little one. And I’m proud of u too! And I thank u for responding… honestly I do
Oh Dana you have nothing to apologize for! I knew you were a strong person, but DAMN you an AMAZINGLY strong person! Your baby sounds precious and I’m sure you give him lots of love One of mine has a medical condition that I don’t discuss on here. Some things are OK to keep private until we are ready to share. Support and hugs sweet Dana
Omg Dana. I’m so glad you let yourself come out with this!! This must be so painful. I’ve often thought how very caring and kind you are and that you would be such a wonderful mother. I’m so touched so hear now that you are already a mother, giving her all for her son and living with such a difficult painful situation. I don’t know what to say other than that my already massive respect for you just got multiplied. You’re a freaking rockstar in my book.
Thank you for sharing. I wished I could give you just the biggest hug.
@Butterflymoonwoman thank you for your honesty. We are here to support you! I think you sharing this piece of you is just a testament to you growing in your sobriety. Im sorry you dont have care tonight for your son. Ill be up if you want to chat to stay awake!
Oh Dana I am so glad you told us. Your son is truly special and fighting battles we can’t understand.
I empathize with you because in 2011 my son then 3, was diagnosed with Acute Myeloid Leukemia and was hospitalized for 8 months and 5 rounds of brutal chemo followed by a cord-blood transplant. It legit caused PTSD as I had to watch him suffer and not be able to do anything about it. HOWEVER it was not the worst that could happen because they could, and did, cure it. During my personal education about childhood cancers, I learned of the horror that were brainstem tumors. so so sorry for you and your son.
I empathize too because I have twins, now 4, that I gave up for adoption because I was incapable of taking care of them due to my addiction and recovery. They are a boy and a girl, the little boy was born with a major heart defect calld Tricuspid Atresia which means he has only one working heart ventricle.
You are going through one hell of a lot lady and I want to send you all my strength. The very good thing is that you’re clean and can be there for your son.
Awe Rebecca thank I so much for ur kindness. I had no idea that you also have a kiddo who has a medical condition. My heart goes out to u. Truly it does. Ur right tho, it is okay to keep things private until we are ready. I think tonight’s lack of care was the last straw and I honestly go to my HP for everything bcuz I don’t have the strength some days on my own to do what I have to do. I find it very hard to look after my medical son some days when I’m trying to also look after myself. But at the same time, I feel so blessed that God has given me my son and that he has given me the ability to care for him. It’s hard but I don’t see it as a burden. And I feel such relief posting this. Altho I almost deleted it like 3 x lol thank u for ur beaultfuk words. Thinking of u and ur child also. I know it’s not easy Hugs
Awe omg… Love u lady! U brought tears to my eyes I often thought of myself as never being good enough for my boy. I often felt like I failed him. But im doing well now and making those amends to him. Ur post is soo beautiful. Really it touched my heart Thank u for ur kind words. Wish I could get that hug honestly. I really could use one haha
Love u lady! I never thought of it that way but I think ur right. I just felt like I was at my breaking point. I’m missing work tmrw bcuz of this lack of care and I’m physically going to be worn out. It’s just hard bxuz I HATE being awake that late… its not good for me. But I have to remember my reason for being awake and that’s to care of my son. There’s a good purpose behind it. But I might be taking u up on that offer. I wont bug u too much tho lol
Thank you for trusting us with your truth and you definitely do not owe us an apology for anything. We all get to choose what we share about ourselves here and we are not obligated in any way to share unless we so desire to. You are so strong and life has and is so challenging at times. I hope you feel some release from sharing. My heart goes out to you, as it often does. I admire your strength and fortitude. You get it done little mama.
Omg Kat… us mothers who have kiddos who have any sort of disability or medical condition go thru so much. I’m soo grateful that they were able to treat ur kiddos leukemia. Childhood cancer is beyond devastating. U may have heard of a brainstem tumor called DIPG. That brain tumor is deadly and the child (from what I understand) doesn’t live long unfortunately. My son had a brain biopsy shortly after his first CT scan and mri. Thankfully… it isn’t DIPG, however my sons tumor is a “cousin” of DIPG. It’s called Angiocentric Glioma. It’s woven into his brainstem so they can’t operate. But ptsd over his medical stuff?.. absolutely. He has medical PTSD also. So I often have to teach him emotional regulation and calm him and walk him thru things with the skills I’ve learned. My husband (his dad) is an incredible father to him. Very grateful that I’m not doing this alone but at the same time I do feel alone. I have been suggested to seek therapy over my sons condition but haven’t yet. But I thank u Kat for sharing ur story with ur kiddos. I think we honestly need to be gentle with ourselves as moms. All of us our doing the best we can. When we are faced with out child’s disability or medical condition, and if we don’t know how to cope in healthy ways, it makes it hard to not cave and try to help ourselves in the unhealthy ways we know how. But we know differently now hugs Kat!!
Awe I needed that bear hug!!! Also so sorry for my horrible spelling on ur post haha oh my… I can’t type. I’m tired and now emotionally exhausted but I feel so relieved. Was gonna share a phot of my boy but not sure if I can. He’s very photogenic!
Anyone who judges you for this or anything else you have posted here in all your strength should be sent directly to me and I will hug the judgement right out of them.
Thank you for your honesty and for sharing your son with us. You are an amazingly strong human, I’m grateful for you in the world and on this sober path with me.
Thank u so much for ur beautiful words. I just had to share… things have been building up emotionally when it comes to his situation and sometimes I feel like I can’t manage my feelings. TS is my biggest support and it’s where I can be fully honest. I felt so bad for hiding it but tonight qas the last straw. I get so frustrated with homecare issues. I absolutely got a HUGE sense of relief. And even more relief knowing I wasn’t judged honestly huge hugs to you
I mean for what he’s gone thru, he truly is doing well. He has his tumor still, his trach where he has lost his voice due to it, his gtube (he eats nothing by mouth) etc but we are making progress. I don’t work during the week bcuz someone medically trained (myself, my hubby or an LPN) needs to stay with him. I do therapy with him everyday now, speech, physio, occipational therapy. He needs 24 hour awake care. That’s why I only work on weekends while my hubby works during the week. So normally bcuz he needs 24 hour awake care, LPNs come into our home from 10pm-7am and stay awake with him in his room to provide medical care and take care of him on his ventilator.
I’ve often thought how very caring and kind you are and that you would be such a wonderful mother. I’m so touched so hear now that you are already a mother, giving her all for her son and living with such a difficult painful situation. I don’t know what to say other than that my already massive respect for you just got multiplied. You’re a freaking rockstar in my book.
so so sorry for you and your son.
thank I so much for ur kindness. I had no idea that you also have a kiddo who has a medical condition. My heart goes out to u. Truly it does. Ur right tho, it is okay to keep things private until we are ready. I think tonight’s lack of care was the last straw and I honestly go to my HP for everything bcuz I don’t have the strength some days on my own to do what I have to do. I find it very hard to look after my medical son some days when I’m trying to also look after myself. But at the same time, I feel so blessed that God has given me my son and that he has given me the ability to care for him. It’s hard but I don’t see it as a burden. And I feel such relief posting this. Altho I almost deleted it like 3 x lol thank u for ur beaultfuk words. Thinking of u and ur child also. I know it’s not easy Hugs
I often thought of myself as never being good enough for my boy. I often felt like I failed him. But im doing well now and making those amends to him. Ur post is soo beautiful. Really it touched my heart 
