Madison & Janet: Connected Through Their Daughters’ Legacies

Madison, who recently lost her daughter Zoe, was matched with Janet, also a bereaved mother. They both explain what it has meant to them to participate in Hand to Hold’s Helping Hand program, which matches peers with one another for support. Such meaningful exchanges have now blossomed into a beautiful friendship, a legacy of their two daughters.

Madison M

Madison MooreAs a first time mother afflicted with the hardships of losing a baby full-term, the pain and heartache of it all is a life changing experience. The benefits of receiving support from my match with Janet has been an essential part of pushing through the extra tough days and talking with someone who really knows what’s going on and knows how you may REALLY be feeling has made all the difference in the world for me. Being a person who has always been independent and strong for others was something of a disadvantage for me when I really needed someone to talk to about my feelings, concerns, and personal keepsakes such as my daughter Zoe’s death certificate.

Each day I hope to be a woman of strength to walk through life knowing that I have the love of my daughter with me and the blessings of being able to see her for the last time even though it would be my last. The experience of chatting with Janet has made me a better person in knowing that you’re not alone. I still have a long way to go in my grieving process since this would not quite mark the first year. I’m just very grateful to have someone who is willing to listen and be empathetic when I feel as if the loss is too much. Thanks for giving me such a great match….

Janet C

I love the honor of supporting another grieving mother. It allows me to carry forward life-to-life ministry and also honors my daughter’s legacy. Being matched with a woman who has experienced a similar loss is also beneficial because I am able to understand and empathize with her loss.

Recently, we discussed some of the details of the paperwork involved with losing a child. It’s not something that parents want to manage, but have to. I was able to share my experience with it and give Madison some advice in her situation. This is just one of the ways I’ve found this match to be beneficial.

The most important aspect of the match is that two women, who never would have met, are now becoming friends because of the children they no longer have with them. And hopefully we will get to meet when I travel to Texas this summer!

Peer Support Was My Lifeline

By Donna Mossholder

ThurstonWhen my son was born prematurely, nothing could have prepared me for how my life and the life of my family would change.  That deer-in-the-headlights feeling when they wheeled me into the NICU for the first time, seeing my poor 1 pound son hooked up to what seemed like a million wires and machines, doctors and nurses fluttering about like moths to a light, medical terms flooding what little brain capacity I had left, not knowing if my son was going to live or die: it was an all encompassing surreal nightmare I wished I could wake up from.  What I needed more than anything was someone to lean on, someone to be there for me emotionally, to walk me through the nightmare: But not just anyone.  Not the nurses, not the doctors, not the therapists not the social workers, not one of them, no matter how many years of experience working in the NICU, could understand the gravity and emotional whirlwind we were going through.  

Mossholder familyThat is why I will always be forever indebted to Hand to Hold.  Hand to hold understood what I needed because every single person that comprises this amazing organization has gone through it before in some way, shape or form.  They held my hand through the worst of times, gave me comfort when I didn’t have any, sheltered me from wave after wave of bad news.  The peer support, the many hospital visitations, phone calls, emails and events throughout my son’s year long hospital stay and eventually his passing helped to sustain me, gave me some relief at times I needed it most, and gave me hope when I thought there was none. They continue to be an integral part of my life and have helped me realize that through helping others, healing begins to take place.  I cannot recommend this organization enough to those in need.  They have helped me and my family so much and we will forever be grateful they were there to hold our hands when we needed it most.

Feelings of Grief, Gratitude and Healing

Neonatal Maternal Transportby Cindy Marks

After a difficult pregnancy, my son was delivered nearly 6 weeks early due to the fact that I had HELLP Syndrome. He was medevaced to a larger hospital while I had to stay behind as a patient at the smaller hospital. For 30 days, my husband, one year old daughter, and I traveled back and forth from our home to the larger hospital to visit our “Superman.” When he was finally discharged, I thought that everything was over and life would continue as normal. I was wrong.

For the first year of his life, I barely had time to think about what had happened with his delivery and our NICU experience because my life was consumed with taking care of two small children. When thoughts of what had happened would creep into my mind, I would shove them back because it was never a good time to think about them. I was taken by surprise on his first birthday when feelings of grief snuck in with my happiness. I felt something must be wrong with me to feel sad since everything turned out okay. Again, I pushed it back.

Eight months after his first birthday, my friend had a premature baby in the NICU. I wanted to provide her with my support, so I was forced to face pictures of the NICU, feeding tubes, and everything else that goes along with the experience. Her experience turned out different than mine, and her precious baby boy passed away a few days later. For the first time, I cried—hard. I cried for my friend and the injustice of what had happened, and I cried for my boy who also had been in the NICU. I was no longer able to push away what had happened. It was right there staring me in the face, and I had to face it.

A Google search led me to Hand to Hold. Laura Romero immediately responded to my request and was available to provide me insight to the unique feelings I had. She matched me up with my mentor, Kimberly, and the two of us talked on the phone. I told Kimberly of how I had tremendous feelings of guilt. I felt guilty that my son had to be delivered early because of my syndrome and had to be in the NICU. I felt unworthy of my sadness of the experience because my son was healthy and alive. I couldn’t figure out why I wasn’t “over” the whole experience and able to just move on with life. Kimberly shared her experience with me. A key thing she told me was that even after 8 years, she still has moments of sadness but that those moments are briefer and further apart. She told me that you don’t ever have to get over it. It’s a traumatic experience that happened to your child. You are that child’s mother and you never want anything tragic to happen to your child. And when something tragic does happen, it’s okay to feel sad—even years later.

My son just celebrated his second birthday. A week before his birthday, I found myself curious and wanting to see his NICU pictures which I couldn’t look at before because of tremendous sadness. As I was looking at the first days of my precious boy, I realized something . . . I was smiling. Today as I watch my son running around the house playing with his sister, my heart swells with gratitude and healing.

Victoria Chambers Remembers Her Son James

Victoria and James, Photo courtesy Chambers Family

Victoria holding James

What made you want to get involved with Hand to Hold?

After I lost my son, James, the compassion Kelli Kelley showed my husband Matthew and me, as well as the parent mentor I was partnered with, made us want other parents to have the same resources and opportunities available to them. We spent a very long 6 months and 11 days in the NICU, and dealing with all of the issues that comes along with that makes having a parent with similar circumstances to talk to a nice safety net.

What would you like to share with other bereaved families?

I would like other parents to remember that they are not alone in their grief. Their families will never understand what they are going through, so Hand to Hold is a valuable resource to turn to. I hope that they do not feel alone and know that they will always have someone to help them in any way that they might need.

What would you tell parents about being in the NICU and facing the possibility of losing
a child? What do you wish someone had told you?

James, photo courtesy of the Chambers Family

Make every day count because you never know when it will be the last. Make sure your baby knows that he is loved and that he is special just the way that he was born. Celebrate every milestone and achievement – it’s the small things that matter the most (like bath time for Matthew and me). A very special person dear to Matthew and me told us that some people need 60 or 70 years to achieve what they were put here by God to do, others may only need 6 months to achieve their purpose in life.

The only thing I wish I had been told sooner was that my son was going to be in the NICU for a while and that I may want to save some of my maternity leave. He was sick for such a long time that I was always running low on time off. I wish the doctors had been honest about that so that I could have just gone back to work.

What do you think bereaved families can do to support each other?

Remember that everyone loses a child differently and that we are all affected differently, but all babies are special no matter how short a time they may have been here.

We know that you have a new daughter. A lot of families worry about getting pregnant again and having another child after a loss. What would you tell them?

Kathryn, Photo courtesy Chambers Family

James’ Little Sister Kathryn

Not to worry. Babies are something precious to be enjoyed. No one can tell you when you are ready for another child. Only you and your partner can decide that. You also both have to be ready to accept a new child. Matthew and I decided to have more children only a few months after James had passed away. He was my first child and I never was able to take him home. After he was gone I missed caring for him but I knew he was in a better place and he was no longer hurting. We didn’t allow our family and friends any part of our decision because we felt like it was none of their business. There are some people who think you will never be ready. Matthew and I waited until after my great niece was born to see how we would react to her and the fact that she was born so perfect and healthy. When I was able to hold her for the first time and see the “normal” process of birth, we felt that we were ready together to have another baby. I would not trade my Kathryn for anything and she was not a replacement for James. Make sure you are not trying to replace one baby with another. As soon as you feel ready and your partner is ready, then have another child and enjoy every moment of it.

I also would like to share with families that Matthew and I chose not to hide James from Kathryn. His pictures are up in our house and he is still very much a part of our family. When we go to Mass we teach Kathryn to ask James for our prayers. Part of her middle name (as well as any siblings she may have) is James so that she will always know that her big brother is watching out for her and protecting her. We also have celebrated his birthday every year to keep him close to our hearts.

Sibling Discussion Re-Cap

On Sunday May 15, twenty parents joined five panelists from the Austin community to discuss the unique challenges that siblings in families of children with special health and developmental needs face and to offer ideas to parents on how to support the needs of all the children in our families the best.

           

I was excited about this event both professionally and personally.  So many of my questions and concerns regarding my worries with my son Cameron were addressed and the connection I felt to all of the parents in the room was so strong. It doesn’t take much to make me feel connected to other moms who are walking down the same road I am with Brooklyn and with Cameron and being in a room with these women brings a certain amount of comfort and peace and the sense of knowing that they all “get it”. There is no judgement involved in what you say or express because everyone in the room has felt the same way at one point in time.

The panelists were wonderful and really took the time to answer the questions thoughtfully and thoroughly.  They talked to the audience about the common concerns faced by parents in this population, the developmental stages of grief and coping, communication with children, sibling rivalry and discipline as well as various ideas for helping children express emotion.

It was so comforting to hear the panelists talk about the most common concerns that parents like me face. I often wonder if I worry about things I shouldn’t be, or if other moms like me face the same daily struggles and hearing my concerns validated brought me peace. Among the many concerns parents face, the top triggers seem to be  balancing time between children, worrying if all of their children will fit in and planning for an uncertain future.  We learned that our “typical” developing children have many unique concerns as siblings, but that they also share all of the concerns that we as parents have as well. Panelists stressed that the most effective way to support the siblings in our families is to take the time to be there and to really LISTEN to what they are saying.

The discussion about the developmental stages of grief and coping was great. One false assumption by many people in society is that children do not grieve. Children of all ages grieve, it just looks different at each stage of development. For siblings of children with special health care needs  there is often this idea that they caused their brother or sister’s disability or that they might “catch” what their brother or sister has. Panelists shared that for this population, honest communication between parent and child is necessary. Panelist Khris Ford shared that for thirty years she believed that the death of her sibling was her fault because no one in the family talked openly about the death. Hearing stories like this is powerful and emphasizes the need for open and honest family communication.

I have struggled with sibling rivalry and discipline with my own children. We have found it hard to explain to Cameron why we don’t put Brooklyn in time-outs when she is biting or having a  tantrum. To Cameron (who is only 7) this is a big deal because his form of discipline when he was younger was sitting on the stairs for a time-out. He often

complains that this kind of thing is “not fair”. I have also struggled with the belief that every time Cameron acts it is the result of having  a sister with a disability. I guess I want to “blame” his misbehavior on the experience. The panelists reminded parents that these siblings, even though they have extraordinary life circumstances are just still “kids” and unwanted behavior is a part of being a kid. They stressed that as parents we need to deal with the symptoms and worry less about trying to figure out if what we are seeing is a “sibling” issue. Sibling rivalry happens in every family regardless of the needs of the individual children and all children need support because being a kid is tough.

The end of the discussion brought many suggestions for ways we can support our “typical” developing children best. Panelists suggested that we start with giving our children appropriate control, avenues for expression (such as art, music or journaling) and MANY opportunitites to meet other children socially who have similar life experiences.

Hand to Hold Adds Prayer Blog

mom holding a preemieHaving a baby born early or with a medical condition and experiencing the pain of a loss is heartbreaking and devastating. We are parents who have shared a journey like the one you are experiencing now, and we want you to know you are not alone.  These experiences are often an emotional rollercoaster – and they can take a toll.

We’ve begun this prayer blog to give you an outlet to share your heartache, your child’s upcoming surgery, NICU developments, setbacks and challenges you’ve been holding inside.   Tell us what is going on and we’ll encourage our families to remember you in their prayers and submit helpful comments of support.  Prayer requests can be made anonymously and are open to those of all faiths. All submissions and comments will be moderated.

Also, you may find it therapeutic to write  about the emotional experiences you are going through. Researchers have found that journaling can assist with healing.

You may find this blog posting interesting: 25 Intriguing Scientific Studies  About Faith, Prayer & Healing

Amy Bills and her son Oliver

Worry, anger, grief, joy, exhaustion, relief, bitterness, financial anxiety, physical pain. That sounds like a bad year by any standard. For a parent with a premature child in the Neonatal Intensive Care Unit, it’s not unheard of to experience all of those emotions in a single day.

The phrase “it takes a village” never meant so much to me as during the summer months of 2008 after the premature birth of my 28 1/2-week-old identical twin boys, Oliver and Avery, and the loss of Avery at two days old due to a congenital heart defect. My husband and I were lucky to have a close community of family and friends propping us up as we experienced all of these emotions and more. Because we were cared for, we could care for our children. But not everyone has that network. Volunteering through Hand to Hold to help prop up another NICU family allows me to bring the gift full circle.

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