Matters of the heart

Grief is very interesting. I have been contacted by thousands of people over the last year, as Conner has touched their lives, or parents reaching out having lost a child of their own, or some asking how to relate to friends who have become bereaved. I feel honored to this calling in my life. I had to come to terms with the fact that Conners life journey was fulfilled so God called him home, and because He’s not finished with me yet, I have to fulfill the call He has placed on my life. That is why I still have breath in my body…

I feel I should reach out and give my overall experience this past year having watched my son pass away, and living and learning in the aftermath of it all, I feel that it may resonate with some people struggeling to feel “normal” after their losses, or relating to them as they watch their children pass away after a lifetime of struggle. I know my best form of help has been reading. I’ve read at least 30 books on grief this past year, and nothing has helped me more. no group. not talking about the loss. but finding validation in what I’m experiencing and that helps me to feel like I’m not alone…so I wish to try to provide that for some of you who have been reaching out to me this past year…

no particular order, not any one thing carrying more weight than another…heres been my lessons and insights…these are the things that I learned and have given my soul some rest in the mess of it all…

I will never be “over” it.

I will never “move on” without him, I will find a way to live without him, but never leave him behind.

nobody will ever need me the way he needed me, and that is ok. my living children need me and my husband need me, but having a special needs child that I nurtured in my body and fought for his survival since my 18 week ultrasound, I know it’s ok to know that his need for me will never be matched again in this lifetime.

I expect the ups and downs of each day. I’ve learned to go with the flow of grief.

I am not one bit embarrassed, nor do I apologize when tears fall out of nowhere, I’ve found confidence in sadness and pain

I’ve found perspective like no other situation on this earth could provide. who cares that gas has gone up? does it matter if someone talks about you negatively? NO! what matters, are matters of the heart. and I only focus on what I can control, and I only put my time into things and people that I love.

I’ve rewritten my phone book and address book of friends. I’m ok with those who couldn’t handle the pain, I love them no less, but I’m confident and I appreciate immensely those true friends who’ve stuck by me, or who came into my life this past year and have walked this step by painful step with me.

I don’t expect to really learn to live without him for years to come.

I know that grief can take years to heal and learn to live with, and I’m ok with that.

I’ve found great relief in distractions.

I’ve turned my eyes from this world to the heavens and I make every decision in whats best going to help me to get to be with Conner again.

I’ve learned that posessions of the deceased are important, but more than that, the memories and LOVE you shared uniquely is more valuable and can never be broken, destroyed, lost or taken away from you. I’ve had to deal with the loss of pictures I will never get back again amongst other things, and I found peace that in the great scape of life, the memories are still with me and the photos are simply proof of what I carry in my heart. not as important…

I’ve learned to not take people for what they SAY…but for what their really MEANING to say…

I’ve learned that if I have a servants heart and help carry burdens and pain, or reach out to those hurting that it makes my pain disappear for a moment and helps me to feel like I’m making Conner proud.

I’ve learned to answer confidently when someone asks me how many kids I have. I say three. I used to fear making others feel akward for saying that one child is in heaven…but I learned that by asking me that question, it puts me in an akward position as well, so I answer honestly…and let them know that I’m not upset they asked. I’d rather say 3 than 2 anyday…

I’ve learned a new definition of family and of love.

I no longer have “mommy guilt” for wanting a day or evening to myself…doing whatever…just to recharge my soul. I’d never take the time before but now I know how important it truly is to take care of yourself FIRST…

it used to shock me how people would see me and make a B-line across the street, or just turn around and walk away from me so they didn’t have to say anything to me. I used to get so hurt by that. it still stings I won’t lie…but what I know from that is, they don’t know what to say and more than that, those who are real and will become the most important people in your life will NEVER walk the other way…so cherish those people and let the others do what they do, afterall it’s not your problem, it’s theirs.

a hard lesson is that I’ve learned that I am and always have been more than just Conner’s mom. that one hurt…I lost my identity in caring for him and for fighting CF…I had to reclaim and rediscover ME.

I’m not the person, I don’t care for the same things, I don’t feel, think or love the way I did before I lost Conner. as he left my house covered in that white sheet carried by Rick Little into the hurse…the me I was, walked right out that door with him…and I had to find the ME of now…(still working on this…) but I had to realize that not only was I normal for feeling different…I had to embrace the journey to the new and improved ME…

if you’re trying to help someone in their grief here’s my advice to you…this is what we need and how we’re feeling:

please know that even though we may say somedays that we’re alright…we will NEVER be alright again.

please be ok if we cry…it can come from nowhere…trust me!

what has happened to us has changed our lives forever, we’re different people…please love us while we discover the new US. things that used to be important to us sometimes have no meaning any longer….our shallow worries or cares are gone.

don’t be afraid to say our childs name, and please be ok listening to us talk about them. we need to know that they were important and will be missed and not forgotten.

unless you’ve gone thru a loss of a child, nobody will know how we feel. it’s hard when others try to relate to us with losses of parents etc. every loss is different. a loss of a child is like none other. if you’re looking for words to share in our grief simply say, I’m sorry or just listen maybe.

know we will grieve for a very long time. please be patient.

**(this ones most important)** I put a mask on for the public. I have learned how to function to make it thru each day simply because I have to, I have no other choice. but when life is quiet and still the pain cripples me. it’s still there and is still very real.

**(2nd important)** just because I have other living children does not make the pain of losing one child any easier, nor should it be used as an excuse to “move on” or “get over it”

I found this quote and I LOVE it “when we honestly ask ourselves which persons in our lives mean the most to us, we often find it is those who, instead of giving advice, cures or solutions, have chosen rather to share our pain and touch our wounds with a warm and tender hand. the friend who can be silent with us in a moment of despair and confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not healing, and face with us the reality of our powerlessness, THAT is a friend who cares.” Henri Houwen

I’ve found that the term “heavy heart” to be real. it’s not something that can be put into words…but there are many times during every day where I can literally feel the heaviness in my heart. it weighs on my lungs and makes it hard to breathe. it’s not just a term to me anymore…it’s really, real.

even after almost a year without Conner, there are very few days that I can clean the house, I can’t keep up with the dishes or the laundry, on average I make one actual dinner a week. my body is so overwhelmed with stress, anxiety, sadness, pain, hope, and grief that my body is emotionally, physically and spiritually exhausted most days. if a meal is a simple sandwich who cares? if my house is dirty, what does it matter? if I wear the same clothes a few days in a row, the only person who will care will not be me, but you. because my life is still consumed with thoughts of Conner, thoughts of his death, the sadness of last June 24th, the pain from the people who’ve walked out of my life since then, the quietness most days when people don’t reach out…I’m simply doing the best I can. my children are fed and loved. my husbands heart is held safe with me and I cherish them all immensely…but beyond that, the rest is just details.

others have the luxury of not thinking much of Conners death, or our pain until they bump into us, or something remind them of us or him. But as his immidiate family, we walk in it, live in it every moment of each day. he had a voice in our home. he has a room he used to sleep in, clothes that he used to wear, a place at our families dinner table, a special corner of the couch, certain shows that would be watched and certain times, a schedule unique to him, favorite bath soap, his own cups and plates, his own smell, his own unique contribution to our home…and his presence is now absent. the silence is deafening. we don’t have the ability to simply forget. we have to cope and live thru each and everyday knowing that no matter what we do, no matter how badly we could pray or try to, he will NEVER be back on earth with us. and it’s a daily, hourly, minute to minute struggle to keep going. a choice.

no medication in the world could numb the pain.

no drink any bartender could ever pour would make the silence without his sweet voice one bit better

just because there are days that we look like we haven’t changed clothing, or find it hard to get out of bed doesn’t mean we’ve given up…we’re still trying.

each and every day still gets harder and harder to make it thru emotionally, shock takes so long to wear off, I know he’s not coming home one day, but my heart still finds it too hard to fully accept…and that’s ok. it’s part of the journey. I feel like our heart only gives us the tiny bits and pieces we can handle, over a very long period of time, because if we had to try to deal with all the pain at once nobody could live thru it. I think you’d literally die from a broken heart.

I’ve learned to guard my heart. keep my inner circle small. I don’t allow everyone into the depth of me…even in this blog as “deep” it may seem sometimes, it doesn’t come close to encapsulating the true me. I’ve learned that its so important to protect yourself. not everyone has good intentions. and while God commands us to love one another, there is a HUGE difference between loving everyone, and trusting each person with your heart. trust is earned, not a right.

I really don’t know what more to say. I just felt compelled to speak a bit of my journey thus far for you. my lessons, and what I’ve opened my heart up to learning. I know that the pain is like a sledgehammer pounding on my heart over and over again, making somedays so unbearable to survive…yet I’ve learned that I have nobody’s expectations to live up to. no timetable to follow. grief is a journey of the heart. and you make it one baby step at a time. and I’ve learned that people who try to rush you thru it, only do so because it makes them uncomfortable to talk about death and pain. and that is their problem, not my own…

Love Love Love