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MiasMommyForever

The loss of my 5 year old girl to cancer

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I can't bring myself to go physically to a support group, so hopefully I can find some comfort here. .

I lost my 5 year old daughter to stage 4 Wilms Tumor almost 4 months ago on May 25, 2017. She beat it once, so they said, though her remission only lasted the summer last year. We got diagnosed this time 2 years ago, the worst news I've ever heard. So out of the blue, as she had just started preschool and never seemed sick at all. Even through all the rounds of chemo, her counts being low, her platelets being almost nothing, she was always her lively happy self. She never complained when I had to give her shots in the leg many nights in a row just to boost her immune system after strong chemo. Right up until a month before she passed, she only took medicine for nausea. We took a Make-a-Wish trip in early April, which was supposed to be five days, and she got pneumonia after the first day. Sometimes I feel that if we didn't take that trip, I could have kept her longer. Everything went downhill after that.

I have two boys, 7 and the other just turned 4, and they are the reason I can get out of bed. I try to be strong for my husband, but his grief is so different than mine. He drinks, and hardly ever talks about her. He'll mention that he misses her on his bad days, but I feel like I can't ever talk about her to anybody. I feel like I have to be the strong one, because everyone is going about their day and they don't need to see me bawling my eyes out. I haven't taken a shower without crying from start to finish since she passed. Anytime I'm alone, even if it's just a quick trip to the store, I cry. I scream out to God, why did he have to take they only thing I've ever wanted? Why did he have to take my only girl?

She was all I've ever dreamed. Curly hair, loved everything girly and glittery and soft, and had the sassy mood to match. My mini me. My pretty girl. I can't even bake cookies without her.  I can't make certain foods that we would make together, and I can't hear our girl songs on the radio. I feel like someone is sitting on my chest and I can't breathe. I thank God for letting her go in my arms, so peacefully, but I can't understand why. I fought so hard, I gave her every medicine they told me to, I researched clinical trials on my own, I took her out of town in hopes we can get stem cell transplant, but we were never able to. Her birthday is next month, and I'm already upset about it. The pain only gets worse. I miss my Mia. How do I live? I fear I'll never be happy again.

 

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Devianz   

MiasMommy,

I am so sorry for your loss, and know how hard it is to carry on with being strong for others and carrying on for your husband and children. It's difficult to have to grapple with your own grief and still have enough energy for others.

Everyone grieves differently, and it makes relationships with someone you are close/intimate with even more difficult because there can be a lot of miscommunication and misinterpreted cues and body language. For my husband and I after I lost my 20 year old son, it was so difficult to ever find ourselves on the same page, we each expected the other to feel the same way that the other felt but we didn't talk about it so it was often wrong assumptions that kept us from talking.  We grew very distant, and felt like we were both adrift on an ocean of our own sorrow. We continued this behaviour for longer than we should have until it felt so heavy we didn't even want to be in the same room together and ended up in a big argument. We yelled and we cried and we said things we'd been feeling for a long time, but we were both so afraid to hurt or burden the other. And then we went to therapy and that is helping so much.  Everyone is so afraid to start talking, but once you do... you'll start to wonder why you hadn't done it years ago.  It's important that you talk to each other, because you are both on different journeys and the path is laden with traps and forks that could take you further and further apart until you are both lost. 

I want you to know that it is okay to let it all out.  It's okay to scream, cry and be angry and feel like it's all so very unfair.  It's okay to share that pain with others and it's important that you understand that you have to give yourself a break, and that you can break. Don't hold yourself to expectations you can never reach or you'll end up bottling things up for later and have a whole shelf load of sadness and grief that will make you sick in the end.  Sometimes just emotionally and mentally, but in a lot of cases physically as well.  The loss of a child is possibly the hardest grief in life, and losing them when they are young is certainly heavier than most people can bear. It's an unending sorrow that you have to take one day at a time because there are little things that remind you of her at every turn. You expected a long life with a daughter you could share with and teach, someone who would look up to you and share a future with.  You will have to expect there will be moments you will cry, at any given time.  It could be a laugh you hear on the wind, or the bouncing curls of a child at the park and it will overwhelm you. It's okay and perfectly normal to feel overwhelmed.  It's okay to ask others for help.  It's okay to seek help for yourself, either in group therapy or individual therapy. 

The pain will never go away, you will always have it to bear.  But you can find ways to cope and fill your life with supportive loving people who will be there for you. I found that some of the people I considered my friends couldn't handle what I was going through and didn't know how to connect.  They don't want to think about what happened to your family and your child could happen to them, so they pull away.  It's not their fault, they just don't have the tools in their arsenal to handle it. But you will find people who will step up as you go along, and find support in others if you just open up your mind to letting new people in.  Your life will never be the same.  You are not the same.  It's so hard to pick up the pieces and try to fit them all back together, and it's instinct to do just that... but it never goes back to the way it was and you will end up frustrating yourself endlessly. Take each day one at a time, and keep the things that you loved from yourself and your life and rebuild around that, trying not to worry about getting back to "normal".  There will never be the same normal as you had, everything is new in some way.

I am so sorry that you lost Mia, and I know that her birthday is coming up and it will be a very difficult time for you.  It's okay for you to not want to get out of bed that day.  It's okay to take your time and do it in your own way, and to not live up to others expectations.  No one has walked in the same shoes as you have, and their expectations come from a place of not knowing. It's not anyone's fault, it's just a matter of fact.  Unfortunately for parents of a child who has died, we understand and we are here for you to talk to and share stories with.  We love to hear stories of who Mia was and how she lived.  We often share pictures and stories, and how we are coping with things as well. Our struggles, our failures and our triumphs. Come when you can and share what you want, we will not judge you and we get it.

~Margo

P.S. This forum has been around for a very long time, and the majority of the people congregate in the "Loss of an Adult Child" forum, even those who lost a young child or baby.  Feel free to join us there and tell us about Mia or just how you are feeling today.

It's in this thread if you click on the link;
http://forums.grieving.com/index.php?/topic/41-loss-of-an-adult-child/&page=2440

 

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Margo....thank you for answering MiasMom.....I read her post this morning but had to get up and go get some errands done. I wanted someone to let her know she is not alone.

Mias Mommy.....our heart breaks with yours. I read your post this morning and could feel your complete sadness through the screen. I am so..so sorry you lost your Mia. Please do what Margo told you to in going to 'Loss of Adult Child' site....there are many active parents on that site....and really....it doesn't matter about the chronological age of our child...I believe that if a child dies in the womb...lives 2 days...10 years....25 years...50 years....they are still 'our child'....many parents on that site has lost a young child. My son died when he was 42.....our grief journey will be as unique as our child is unique. There is a lot of common ground in this kind of grief we can share. I want you to know that the 'shock suit' will fit very tight in the first year or two...I consider that Mother Nature's way of giving us a protective blanket around ourselves not to let it all in at once. I understand what you mean by not being able to breathe...I had the same thing...it felt like I was drowning....and I was drowning in such heavy sorrow. Yes....cry all you want in the shower...I understand why you don't want to have a crying jag in front of your other children. Their world has had quite a blow...and it would frighten them. We had a Mom on the other site that lost a 16 year old daughter...and she had two younger sons....it was a challenge for her to grieve and yet....be there for her boys....but she took it one day at a time. That is what I would like for you to concentrate on now.....don't look too far in the past....don't try to look too far in the future....just take in the 24 hours you have to get through now. This kind of grief is exhausting....hard...dark...and heavy. Please 'self care'....for this kind of grief can impact you emotionally...physically...and mentally. Drink plenty of fluids...cut up fresh fruit in bite size pieces and eat on it all day....and do put your feet up...a couple of times during the day....walk outside in the sunshine some each day...pace yourself. If you have family close by....and they can take the boys for over night...or for a few hours during the week...that will give you some 'alone time'....if not...and you have friends that could....don't be scared to ask for some help. Often times...people want to help....but don't know what to do...letting people know what you need is what they want to hear.

I have never had to go through what you had to go through with your Mia....I have a great compassion and awe for parents that have to watch their child slowly slipping away and their strong arms cannot catch them....their love cannot heal them....and the answers to their questions never come. WHY....???  None of us have answers....none of us are professional counselors....just parents that come to help each other. I can tell you that the parents on this site have been a part of my healing...they reached out to me with care and compassion....when I found this site I realized...I wasn't going crazy...I was just in deep mourning.

The first year will be a year of crippling sorrow...I felt that I could actually feel my heart breaking in small pieces...the next two years were still painful...but....with the help of all these parents...I learned to carry my grief and balance came back to me. I will tell you this....you can survive this...and you will find healing....but it will come one day at a time.

Once again....I am so sorry for you and your Mini Me...curly haired baby girl. I have more to share but have to take care of my business.

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miasmommy I am so sorry how awful to be given a cancer diagnosis for your child and still lose her after treatment. It does not seem right that kids get cancer or other dreadful diseases as they are so innocent and have not experienced life enough. On loss of an adult child we are a band of parents who have all been through the loss like you at different ages from different ways but we are all together supporting each other through the grief journey. It is a very long and painful journey. Many times you feel like giving up because it is so hard and devastating but somehow you will make it through. here you will be understood through the crazy thoughts, the sleeplessness nights through the baring of your soul to the memories you want to share. you will not be judged on your decisions actions or thoughts, you will be cared about and offered advice or tips or prayers or virtual hugs we have been in your shoes and will help you anyway we can. sometimes it may be too hard to post but I hope you know you are welcomed and maybe just reading posts offers insight. i hope you make special connections here with us. Take care

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