Friday, April 18, 2014

Kids grieve too

It's true that kids are more resilient than adults. I feel like too often though, people don't realize that kids grieve too. They feel the pain of a loss, they hurt, they miss loved ones, they suffer. They go through all of this and do it without the ability adults have to adequately verbalize or even recognize what they're feeling and how their loss is affecting them.

This week Aurelia finished her therapy, grief counseling, whatever it should be called. I think the most benefit came for us in learning how to help her talk about her grief. Daniel and I were with her for her play therapy sessions and we learned how to help a child grieve a loss. They have difficulty expressing their pain, so they need their parents to guide them in talking about it. Kids also need a lot of repetition and will ask the same questions over and over again, not needing a different answer, just needing to hear the same answer reaffirmed.

It's been so hard watching her get so uncharacteristically upset, collapsing in an overwhelming fit of tears when she doesn't understand and can't explain why. A three year old doesn't have the ability to recognize and say "I'm not really throwing a fit because my blanket is wrong, I'm upset because my brother and I shared this blanket and he's not here to use it anymore. I'm upset because I miss him, this reminds me of him and I want him here." Instead it's tears and disproportionate fits that seem completely nuts, even for a child.

A lot of helping a child grieve is helping them express themselves and their grief in a way the does work for them developmentally. For Aurelia, one way is play therapy with her babydolls. It's telling us how she doesn't trust anyone else to take care of (hold) her dolls because "they won't be okay". We play with her babies in a lot of the same ways we played with and cared for Noah, and we talk about situations with her babies that help her express some of her feelings and some of her loss.

Kids need a lot of repetition and grieving is no different. A few days ago Aurelia and I were sitting in the living room and out of nowhere she asked "Mama, did Noah die?" I told her "He did". She looked down, crinkled her mouth like she didn't like that answer, then said with a heavy breath, "and now he's in heaven." She knows Noah died. She knows that. But she needed to hear it again, she needed to ask again. 

Her therapist said that at this point, because she's this young, what is going to be the best help for her is just having the kind of parents who would think to provide her with grief counseling. I thought that was sweet of her. What she meant though is that what is going to help most with her grieving is being aware of her. Being aware of what's normal for her and what has changed. What will help is being patient and calm with meltdowns, understanding that there is a lot more behind them than simply "being a 3 year old". It also means being aware that children do grieve, and that we have to pull ourselves together and be strong enough to help her through her grief while healing from our own.

Distraction and pouring my heart out

I've been letting myself heal and grieve in whatever way feels the most helpful, and for the most part its been distraction, distraction, distraction with small sprinklings of facing reality when I feel strong enough to do it or when I can't avoid it. I've been trying to stay busy, busy, busy and thanks to the warmer weather it's been easier to do. A lot of our healing is just going to take time.

Distraction
A dear friend wrote a sweet message to me about a week after Noah's passing and in it he said "keep busy with projects, go for walks, the park, do projects and constantly be concentrating on a task. The idle mind is the mourners playground." I've clung to that and it's been the best way to handle things right now. It feels kind of weird basically avoiding things but for now it's what we need. We face it in small pieces rather than drowning in the heartache all at once.

There are still things that we need to do (packing all his toys and clothes away into storage, taking care of some loose adoption ends that a friend is helping us with, etc.) and when we feel strong and in a good place emotionally then Daniel and I tackle them a little bit at a time. A lot of the things we need to take care of just bring a lot of pain with them. 

Once the numbness of shock wears off you're left with the heavy, crushing, smothering pain of the new reality. Some of my hardest times are when I'm already feeling fragile, I can't distract myself and I find myself overwhelmed with everything from the past few months. 

Pouring my heart out
So, distraction has been our friend for sure. Sometimes what I want though is to feel it all, to let it fill and ravage me, and spill my heavy, bursting heart to whoever wants to hear it. Most of the time I vent it all to a friend who asks, sometimes though it ends up being me blindsiding whoever asks "how are you?" first :) A few people have been caught off guard when they say "Hey! How are you?" and I respond with "Pretty awful. How are you??"

The other day I went to return a dish to a friend who had made dinner for us. She asked if I had time to stay and talk, so I sat down on the couch with her and poured out every painful detail of the last few months. Every last horrifying, unbelievable detail. I felt so much better leaving her home. She took and carried part of my heartbreak.

We have a pretty fantastic family doctor's office. The other day I called their nurse with a question about Aurelia, and after she helped me with that she asked how Daniel and I were really doing with everything, with grieving, with healing from all that had happened. She stayed on the phone with me and helped strengthen and encourage me.

I'm so thankful to everyone who is there to listen to me pour my broken, often angry heart out, and thankful to those who so gracefully handle being blindsided by a dam burst of heartache :)

This is the advice I've learned and been telling myself for our grieving:
Face what you can, when you can.
Spill your heart when you want to, keep it inside when you don't.

Thursday, April 3, 2014

Days of Healing

I always want my blogging to be either cathartic or helpful to others in some way. Yesterday's blog post I feel was neither. I don't feel any better having shared how hard it is to watch Aurelia grieve. Maybe it helped a few people understand the complexities of grieving adults with grieving children -- I hope so. I had never thought about the difficulties of helping your child grieve while you're grieving until my cousin (a mother of two) became a widow a little over a year ago. I guess if anything were to come from the last blog post please let it be an understanding of how grief affects an entire family, and how hard it is on parents to watch their children hurting while they are trying to trudge through their own pain. 

I think there have been enough people who have written about our kind of grief (losing a child) in enough detail that I don't feel the call to add to their voices. I don't feel the need to share this part of our path as strongly as I did our struggles through infertility and adoption.

I don't think describing the painful parts of our grief will serve my purposes of catharsis or helping others. Instead, going forward I want to focus on sharing how we're surviving and how we're going to make it through this. Every day I'm going to focus on our path of healing. I'm going to share what we're doing and the things that are helping us put ourselves back together. These will be our days of healing. Rather than sharing the painful steps of our path, I'm going to share the small joys we find along the way, and how we keep moving forward.

Isaiah 53:4
"Surely he hath borne our griefs, and carried our sorrows..."

Wednesday, April 2, 2014

Life isn't fair

Life isn't fair. I know life isn't fair, and I don't expect it to be. Lately though I've been wanting to cry and angrily yell at the universe that one thing in life is completely, unacceptably unfair. Kids should not be so acquainted with loss, with grief and with a loved one gone too soon. It's. not. fair. 

It's not fair that she knows people can just die, long before natural causes take them in old age. Kids shouldn't have to know that. Kids should get to be oblivious to early death. Kids should get to carry on with their magical, imaginative lives, thinking everyone they love will always be there with them.

It's not fair, it's not right. Kids shouldn't have a reason to beg and plead for their favorite person to come back to life. Kids shouldn't have to struggle to understand why they won't see the person they love. Kids shouldn't have to be faced with all of this. Kids should be playing, trusting, loving and enjoying life. They shouldn't hurt and suffer and struggle through loss like this.

It's not fair for a little three year old to be feeling and dealing with everything she's had to go through. She shouldn't have to be facing all the anger and hurt that's changed her sweet personality. It's not fair that I can't protect her from all of this. It's not fair that her trusting, happy view of life and adults has been scarred.

Watching and trying to help a child grieve while grieving ourselves has been excruciating. There is so much more pain and loss to this than simply the death of her brother. The few weeks Noah lived after leaving our family were full of devastation and heartbreak that we couldn't have prepared for and that will take a long time to heal from.

Child grief manifests in some of the same ways as adults (none of us have really been able to sleep well) but in many more ways it's so different. It's so hard watching her act out her new understanding of how she sees the world what she's experienced. It's so hard answering her painful questions as she struggles to make sense of all the hurt.

It's not fair, it's not right, it's not fair! Why should she have to know such heartache?! Why should she have to know loss like this?? I hate that I can't take it all away from her. I hate that I can't protect her from it. I hate that I can't carry it for her. I hate having to explain it to her and try to help her through all of this while I'm barely, and a lot of times not even, keeping it together myself. How am I supposed to help her through all of this when I'm barely making it myself?? It's not fair, and at least for kids and with death, it should be.



Friday, March 21, 2014

Paying it Forward

We are so grateful for the many people and groups who helped and supported us throughout Noah's life. We thought it would be fantastic to let people know how they can help these groups continue helping other kids and their families. Rather than having any donations made to our family we would LOVE to have time and resources go to the following places :)

If there is a Children's Hospital near you, please consider volunteering or donating in some way. We would love to hear about great things done in Noah's memory :) We were with him at Primary Children's Hospital, in the Infant Unit and PICU, for a month through December and January while they addressed his transient bowel obstructions and tried to figure out why he needed a small amount of oxygen.

Volunteer
Being in a Children's Hospital at all is stressful and difficult, but that is made a little easier thanks to volunteers. We constantly used the help of volunteers during our stay. If ever we weren't with Noah we arranged for volunteers to hold, play with and talk to him. Nurses can't constantly be with every patient so these volunteers are so needed and so appreciated. It was comforting to us to know he always had someone there when we couldn't be with him, and being the incredibly social little boy he is we knew it was what he needed to stay happy and healthy.

We also used the volunteers who are there to play with older siblings. There is a play room at Primary Children's that gave us so much relief. After the first two weeks of Noah's stay, Daniel had to start going back to work. During the day I was at the hospital alone with both kids and for most of Noah's procedures Aurelia wasn't able to tag along. I was able to take her to the play room, she was assigned her own volunteer play-buddy, and I could leave to go with Noah. I knew she was safe and having fun, and I was able to stay by Noah's side. Were it not for these volunteers I wouldn't have been able to be there holding his little hand through everything.

They decorated puppets, then put on a puppet show :)

There are so many ways to volunteer your time and energy to help children and families in Children's Hospitals, or in the Pediatric/NICU area of your hospital. You can make a call to or visit the website of yours to find the best way to help.

Donate
If you aren't able to volunteer time, please consider donating items for the kids and their families, or encouraging your workplace to make a donation of items. Being in the hospital over Christmas wasn't fun. We wanted to be home together as a family, in OUR home. We were split up because Aurelia was sick and couldn't come around Noah. Christmas is supposed to be spent in your own warm, thoroughly magical home, not in a hospital. Our hospital Christmas was made a little more Christmasy by local businesses donating a few gifts to all of the patients. We were even given a little gingerbread house to decorate :)

We didn't like bringing Noah's toys to the hospital, for fear of a Velveteen Rabbit type situation. Thankfully there was an entire room full top to bottom with toys. We were given constant access to tons of developmentally appropriate toys for Noah. Not only did we not have to worry about his own toys picking up something nasty from the hospital, but he always had something different to try out. Especially for the infant unit, where the toys are so important for their development, donated, easily cleaned toys are absolutely needed.

Playing with one of the Infant Unit toys. (December)

Hospital blankets are great and all but they're very utilitarian. We were thankful for all the home-made swaddle blankets, tied blankets, quilts and burp cloths that were donated to the hospital. At first we brought our own for him but we knew there was always the risk of those items being thrown into laundry, never to return. We were thankful to have normal baby things that didn't need to come from our home and that we didn't need to worry about keeping track of. Children's Hospitals always need blanket donations.

___________________________________

NICU Common Bonds. They are a parent support group in the NICU both Noah and Aurelia spent time in. They brought around little baby gifts for us and helped connect us with another G-tube mom who helped put our fears at ease more than any doctor could. They help bring a little sense of normalcy to an abnormal situation. They help exhausted, stressed, frustrated NICU parents feel supported and part of a community.

The "Donate" option isn't working on the NICU Common Bonds page right now but they gave me the following information if you would like to make a donation to this group.
  • Donations to Common Bonds can be made through the Utah Valley Health Care Foundation.  That is the foundation at the hospital that funds the program, as well as the bereavement program.  People can call them at 801-357-7600,  or mail a donation to : 1034 N. 500 W. Provo, UT 84604 Attn: Foundation. State that the donation is for Common Bonds."
____________________________________

The Child Life office at Utah Valley Regional Medical Center. They helped us and Aurelia SO MUCH when Noah was getting ready to go to his last family. The health and strength of our family right now would have been very different were it not for the Child Life specialists. They did some play therapy with her, taught us about how children her age grieve and taught how we could best help her through losing her brother. They recommended a few books to help Aurelia through her grief. We only worked with them for a few days but it made an incredible difference for our family.

**I've been trying to get in contact with the Child Life office to see if there is anything we can do to help them continue helping other families but haven't heard back yet. There are a few books they recommended to our family during our stay and we're considering getting some for them to have on hand. I'll post an update later when we figure out the best way to help them keep helping others.
______________________________________

Lastly, I can't say thank you enough to his UVRMC NICU team. This isn't for donations or volunteering but it's important to us to acknowledge the incredible role his NICU team played so long after he left them at 9 weeks old.
  • His nurses loved him SO much. So, so, so, so much. When one of them asked me if she could visit him up at Primary Children's I said "of course!" We know how much they love and adore him and we're so thankful for that. We were thankful to hear every detail of his early life, every memory of him, everything they knew about his sweet little personality.
  • One of his very favorite people was Angela, one of his NICU OTs. She got to keep working with him in our home as his Early Intervention OT. Noah lit up for anyone and everyone walking into the room but with Angela it was even more so. He knew his Angela. She was one solid source of continuity through his birth family and ours. All of his OTs in the NICU were so supportive, so encouraging. They are very, very good at what they do both for the little babies and their parents. They work to help the babies progress and help the parents learn and feel comfortable helping thier baby progress further.
  • His respiratory therapists, especially Reggie, were big fans of Noah's too :) He was always a respiratory champ in the NICU so fortunately he didn't have to spend much time with his respiratory team but they spent lots of time coming over to enjoy him anyway :)
In the NICU at 7 weeks old