I am no longer able to care for my child because I have neglected to care for myself.
I have spent so many nights awake with her, even when she is sleeping I can't take my eyes off of her. I just don't want to miss one moment and that has caused me to have a full mental breakdown. I am not deserting her, I never will but I have spent the last 4 months caring for her every need, waking up with her, giving her shots, medications, comforting her when she is miserable. Now it's to the point where I know that I need someone to help me out (most likely counsling).
You haven't walked in my shoes most likely, and even the people that surrond me haven't. They support me, give me encouragment but I am bogged down.
I finally hit that BIG mental breakdown. The one where the next person that says one snide comment to me is going to get it, I WILL lay into you.
Can you honestly think that we should even begin our marriage as bitter and angry? No, I want to walk into marriage as a whole unit, not a resentful miserable person. This is one of the big reasons why I am canceling it. Ryan and I are not getting along, we haven't for a few months now. I open and honest about this because I REFUSE to sweeten up the facts. No amount of date nights can fix our situation right now. I will Marry him someday because I love him, he has stuck by us and supports us. We will in time mend what has been taken from us because of Cancer. I know I am too hard on him, I yell too much, I lose my cool too often, but I feel like I have spent so much time doing this alone. This may or may not be the truth but I have been handed over a lot and I am resentful because he gets to go to work, he gets to live a normal like part of the time, he can go in the basement and play video games, he has an escape, I don't. Here I am stuck in a hospital room or with a crying baby on me all day long at home. I am sure he wishes the tables were turned and he could spend more time with Mallory. I know he is doing a good job, he is a GREAT dad, he is still my best friend, I still love him so much. I am sure with some time we will get back to the world that we used to have.
I had pictured my life so much differently.
I am tired, flat out tired, I am doing my best, but best isn't good enough. I have to get better, I have had a hard time handing over my child for someone else to care for because I am her Mom, and I should know best and right now there is no "normal", there is nothing I can do to comfort her outside of morphine and benadryl.
So please your negativity isn't welcome. My child has cancer and she has been my main focus for months and If you see me as weak for walking away for a little bit then to hell with you too.
You don't know me, but I have been reading your blog for over a month now and I think about and pray for you and your family often. You are such a strong person and the best Mommy those little girls could have. There is no judgements only awe at your unbelievable strength. We all do what we need to to put one foot in front of the other, to take that next step where ever it may lead. If I could I would give you a hug, I wish I had more to offer you. But please know that my prayers are with you.ReplyDelete
I can only speak as to my own personal experiences, but the Child-Life Counselors at the hospital have been wonderful in helping my wife and I through some darker times; and if nothing else, it was nice to have someone that you could open up and cry to. They'll do whatever they can to help. I, personally, have never been an emotional person nor have I ever even considered counseling -- yet I can't express enough how helpful Child-Life was for my wife and I.ReplyDelete
I don't claim to know how you feel or exactly what you're going through, I can only pass along what helped us. Neuroblastoma (hell, pediatric cancer in general) is a horrible thing that no one should ever have to endure -- child and parent alike. But, we'll get through it and we'll be better for it.
If you need to talk, vent or just yell at the world and want someone to listen -- my wife and I would be happy to listen. There's a shared bond between families affected by Neuroblastoma, we need to look out for each other and help whenever we can.
My wife has sent you a PAN on BabyCenter a few weeks back, please, if you want to talk we're here.
Father to Alyssa, dx 12/15/11. Neuroblastoma, Stage 4S.
I'm sorry this has happened to you. In all honesty I think every couple goes through a rough patch. In your case your under a ton of stress. My husband and I have a son that is 6 months,healthy but my husband and I had some major fights. I'm talking almost walk out on our marriage fights. I felt the same way you have about bringing the only one who is taking care if our little one. He's gotten better and each day we take it one step at a time. We are working very hard on our marriage. The first step for you is to realize you need help and you did . I pray for you and your family every day. May you find what you need to help you .ReplyDelete
I, too, have been following your blog and you don't know me. I was a part of the Sept 2011 birth board, too, and have a little girl Mallory's age. I often think of you and Mallory and your family and pray for you all often. I cant even imagine what it would be like to walk in your shoes for even ten minutes. You are strong, even if you don't always feel like it. I am amazed at your strengh. You are an amazing mom! Don't let anyone ever make you think otherwise. Lots of love and prayers to you, Mallory, jillian, and Ryan.ReplyDelete
I can't imagine how or why anyone could have negative things to say to you right now. You are dealing with so much, and the decision to postpone the wedding until you are in a better place as a couple and as a person is YOUR decision. And probably the best one you could make. I found your story on the Sept 11 birth board as well and I have a 6 month old son. My husband and I have been together 8 years and have never argued as much as we have in the last 6 months. Babies bring stress. And a sick child can bring so much more than stress. You are doing an amazing job and everyone is pulling for you. It is time to take time for yourself like you said. You have to ask for help. Lots of love from Cali <3ReplyDelete
Hang in there, momma! It's okay to take a break. It's okay to tell the world to EFF off. You've earned that right! The only judgements I will be making is of how inspiring you are! Every child should have a mother like you, then the world would be a better place.ReplyDelete
--Rhiana from PA
I knew something was wrong-not because of the wedding, but because you have be so quiet. I was getting worried. I am glad that you realize you are not a one woman dynamo. You just has a baby-literally. Your body is still adjusting to all the things it needs to adjust to. You never recovered, relaxed, were pampered.....after Mallory was born. You were thrown into this crap situation, and you hit the ground running. It just plain ole catches up with you. That being said. I know Mallory has her next set or MRI's on the 22nd I think. Right? If it were me, I would be getting scared, worried, dreading that effing test. It's horrible to have to face that test, those doctors, and the news. The unknown sucks. That alone is enough to put you in a bad place. Now don't get me wrong, I am not trying to be a downer, but I get it. I used to DREAD,DREAD,DREAD when my Joey needed to got for a CAT scan. I used to start worrying 3 weeks early. It's normal, it's scary, and you just want 1 damn break! Just one. The good news, as told to me by a nice nurse is that a baby that little will not remember this. So, if you aren't there for a bit, someone else can, and I am sure will step up. And guess what? She will never remember it. The nurse told me that even babies need a break, and as crazy as it seems, may find comfort in another arms. Maybe a different set of hands, another way to rock....will soothe a cranky baby. My point Ashley i this, once in a while we all need to wave the white flag. So, wave yours. Take a well deserved break. Go to the damn mall, eat lunch at Panera, get your toes done. Get a haircut cut. Do something that makes YOU feel good. Once you feel good, you will be surprised how much better everyone else will feel. You are the glue that keeps that little family of yours together. As for fighting with Ryan, that is so beyond normal. OK picture this. I was at the neurologist with Joey (My 3 yr old) and my husband Joe. I promised Joey that I would stay with him while they did a test he needed, They were putting him asleep for it. Well, the doctor said I had to go, once he fell aslep. I said no, Joe said just come on, and pushed me out. I was holding all of Joeys stuff, shoes, little toys from the doctors treasure box....So we are out in the hall, and I hear Joey cry, and I say to Joe I am going in. He said no, then the kid screamed, and I moved towards the door. Jor grabbed my arm. I took the shoes, balls,,,,and threw them in his face, and pushed him with all of my might back into the wall. And said get out of my way ass----! That was in front of everyone. So, like you we have had our moments....many, many, moments. And by the way I will be married 25yrs in May. It will all come together, you will work it out, and the wedding will be beautiful...when you are ready-all four of you guys. Feel better cyber friend. If I lived by you, I would be rocking that baby so you could take a break. I am so sorry you have to deal with this. Be well. Give Mallory a little kiss for me. PS I am not proofing this- it's too long!ReplyDelete
Hugs, and prayers for you.... You are a warrior mama on a long haul..... Do not apologize for needing to refueling... Don't apologize for haveing to Grrrrr from time to time, or weep, or get some space,. Your sweetie loves the warrior mama that you are, he understands you are in "war mode" ....ReplyDelete
You are an incredible mama to both of your daughters, help Mallory fight, continue being the best the role model you can be for Jillian.
I send you my warrior mama strength too.
Mama Em, ND
Vent all you need to, let it all out, we are all here to listen, people from all over the world are listening and praying. You are truly an amazing person, and you are so real. Many prayers from FL.ReplyDelete
My son and I pray for Mallory's health and your family's strength evry night. You are amazing! You need to allow yourself a bit of rest. It won't be easy to be away from your babies, but it will build your strength. Good thoughts your way from Florida from me too :)ReplyDelete
I have been following your blog since you posted Mallory's story on the September 2011 birth board. My son is a few days younger than Mallory and I am the same age as you. I admire your strength so much and I check your blog everyday for updates on Mallory. You are an amazingly strong person and I look up to you! I pray for you, Mallory, and your family everyday!ReplyDelete