June 11th. Where does a month go? It was just May 11th that we said goodbye to our little girl…forever. Besides her actual services I felt like the first two weeks I was a pillar of strength. If you had the opportunity to talk to me you might have heard me share how through her passing I saw God’s plan unfold and I might have even smiled about how I felt she had this massive purpose on this earth. But, as you can imagine and as I suspected, the weeks after all the planning and managing her things was over things changed for me too. My smiles became less and my heart hurt more. My tears more readily fell on a daily basis.
My life before Lyd passed was making everything “just so”. I never did anything half-assed. I organized her life, helped her medically and planned what I could for her with everything I had. How I handled her when she was alive was no different for her after she was gone. I just don’t think my mind and heart at that time realized this was totally different. What I did for 7 years was to keep her here. What I was doing for the services was for a goodbye. That fact hit me after the dust settled.
During her challenged life my job was to do all things Lydia. I handled her scheduling of therapies, made appointments for the doctors, took her to appointments, reviewed and attended IEP meetings at school, replied to emails about her health status, worked with the insurance companies and fought for things she needed, fired physicians, hired new ones and advocated her for all things Lydia. It was a full time job I took on and did with all I had, each and every day.
My job in that moment of planning her services was to make her services the most beautiful anyone ever attended. Just perfect. In hindsight while the services were beautiful there was nothing perfect about it. There isn’t anything perfect or beautiful about saying goodbye to your child. Absolutely nothing, at least not in the earthly sense. Planning a beautiful service didn’t do anything to keep her here, it was to make it final that she was no longer here.
The weeks planning for the funeral was almost like what I did for the past 7 years. Taking it on and doing all things Lydia all while juggling my boys. After the services were planned the following week involved donating her equipment and calling medical companies. Then, it all stopped. No more calls. No more planning. I went from all things Lydia to nothing Lydia. My purpose changed ten-fold and now I do nothing Lydia anymore. I’m struggling to find my new purpose beyond what I do for my boys and family.
What they say is right. You hear it all the time when someone says “it still doesn’t feel real.” Tom and I often say we wonder when we’ll wake up from this bad
dream nightmare. While we were told we would never know her life expectancy we fought so hard every day to keep her here with us that we never fully expected this to happen. Knowing it and accepting the reality of it are two different things. I get up every morning hoping what happened isn’t true and I lay there some days dreading moving knowing I’ll be faced with the true reality of it all, once again.
Just yesterday Tom and I were driving by ourselves and he shared how he walked into the bank and one of the manager’s who he has known forever said “I’m so sorry to hear about your daughter. You know…you’ll never get over it.” I sat there with my mouth kind of open (probably like you are) figuring out how to process it but then Tom said quickly in defense “he’s right, he said it like it is, how do you ever get over losing your child? How are you ever ok with it…ever? You aren’t. I’ll miss her everyday and think about her everyday and wish disabilities and all she was here with us.” As we at that point passed the cemetery he continues with “she is laying there in a box, in the ground, how is anyone ever ok with knowing that?”
agree hope what many say is correct, that you never will get over it but the pain may become less apparent. The heaviness in my heart maybe won’t be something I feel first thing upon waking. I don’t know when that time will come but I’m believing some day it will – again, that is what I’m hoping for. I’m hoping with time my 3 year will have less anxiety and not ask me where I’m going and if I will be coming back, that he will not have to watch my car leave until he can’t see it anymore, he will stop crying in his sleep, he will not have random outbursts and that my 9 year old will start to talk and tell me how he feels instead of me hearing from those around me. The dynamics around this loss is more than you could imagine.
Yesterday, we embarked upon one more piece of saying goodbye. Shopping for her headstone. Yes, shopping – these things are expensive and while you want it to be done and placed it is one more thing you can’t let your emotion get the best of. Like any other momentous occasion in life you want the best but the best can be cost prohibiting. How far do you go? My oldest wants an angel on it. I want to have her picture engraved or placed in porcelain along with the words “You are my Sunshine” somewhere. Tom wants a certain shape and color. We don’t find justice in any of it. We talked about fonts, where names will be placed, what color the stone should be, size…you name it. It felt like an out of body experience as I sat there talking about all these mundane features FOR MY CHILD. The irony of it all as we shopped for this around the 11th. After 90 minutes I got up and politely said we needed to be done. WE were done…for now.
I certainly don’t want to drone on and on about how awful life is after someone dies. But I also don’t want to give the false impression we are rock solid and life is great. What I do want to share is a two-fold message: it will never be ok but we’ll be ok. While we mourn her loss and understand with each breath the reality of it all we do find time to smile, to joke and to be us. I see my husband’s humor emerging again with his endless teasing of me, the boys or those around us. When I’m leaving my youngest I prep him now and give him advance warning and I’m finding the tears are less with the anxiety of the separation. We are putting one foot in front of each other day by day. Enjoying the good days and realizing when the bad ones hit.
We won’t be the entire Schaeffer family like we once were but we will become whole again, our own kind of whole – in time. My biggest fear is having our boys say when they are older Lydia’s passing changed us as individuals and as a family – that we truly did live for her and as parents we couldn’t go on after she was gone. That is NOT the legacy I want to leave for my boys. I want them to know we fought for her when she was here, we will now that she’s gone and they are as important if not more now that she is our angel. No regrets.
As a tribute to my first blog post I thought I would post Lydia’s eulogy I read at her funeral service. For those that didn’t make it you can read the words I couldn’t find for days to say about our sweet pea. Many asked how I did it, how could I stand up there and talk about my little girl no longer here? My answer is this: I was her voice for 7 years. I was her advocate, her mother, and the one she depended on. I couldn’t let her leave this earth without one last chance to talk about the greatness she bestowed upon us and share one last time with the masses what she meant to me. That is how I did it for 7 years and that is how I did it on May 17th.
May 17, 2014 Eulogy
In Lydia’s first year of life I found a profound piece of writing that I felt at the time was so fitting for our special needs journey. As I thought about what I would say today I realized it has even more meaning today and I would like to share it with you.
I am the child
I am the child who cannot talk. You often pity me, I see it in your eyes.
You wonder how much I am aware of. I see that as well. I am aware of much … whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions, responses over my well being, sharing my needs, or comments about the world about me.
I do not give you rewards as defined by the world’s standards.. great strides in development that you can credit yourself; I do not give you understanding as you know it.
What I give you is so much more valuable… I give you instead opportunities.
Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.
I am the child who cannot walk. The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependant on you in these ways.
My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.
I give you awareness. I am the child who cannot walk.
I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things.
I am not burdened as you are with the strifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity. I am the child who is mentally impaired.
I am the disabled child. I am your teacher. if you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith. I am the disabled child.
On December 4th 2006, I learned that Tom and I would be blessed with a baby girl. On April 19th, when the Dr. handed her to me, I watched Tom cry as “daddy’s little girl” was finally here. At that time we would never fully know how our sweet pea would change our lives as well as so many others. In 7 short years our sunshine taught us more than most people will learn in a lifetime. She was not only my daughter, she was my teacher.
On October 4, 2007 we learned our perfect little girl had a rare genetic disorder. As Tom and I wrapped our brains around what that would mean we knew one thing for certain – we would never, ever settle for less in what we wanted for her. We knew that even if she had limitations in life, we would help her be the best she could be – no matter what that meant doing.
Lydia through the years again and again showed us and those around her what beating the odds meant. She was often one of the best patients in the hospital, she would play quietly on the floor at home with some of her favorite toys and when she was happy she gave the biggest and best smiles along with belly laughs that would make anyone smile.
Although Lydia never uttered a word she could tell you what she was thinking with her eyes. Her smile could make a bad day seem like it had never even existed. She showed us that each day is a gift and in order to see what that gift holds we must examine it closely and notice the small details within it. She taught us all what it was like to be stronger than we ever thought possible and to never, ever give up.
As I thought through her abrupt and unexpected passing this week I realized that we are very lucky parents. God could have chosen Lydia to be in any another family but he chose US. With all she taught us and brought to our lives it brings comfort to me to know that we were the ones chosen to be her family. How thankful are we that God thought we were the BEST parents to raise this sweet, challenged little girl? And now look at her – she is leaving a legacy that is one to be reckoned with. For that I, personally, am so proud to be her mommy.
As I recall the song WIND BENEATH MY WINGS I realize the words are so fitting. “Did you ever know you’re my hero, your everything I would like to be. And I can flier higher than an eagle, you are the wind beneath my wings.”
Thank you baby girl…thank you for everything you brought to my life. I will forever love you and will miss you with all my heart.
As I close today I would ask your help in singing one last time to our sweet Lydia her favorite, calming song… “You are my sunshine”