http://www.whatiwouldtellyou.com/weblog/one-more-day/  One More Day by Julie on March 3rd, 2012 We often hear of those who are left behind after a death, expressing that they wished they had just “one more day.” If the death was unexpected, there is a sense of panic with the realization that this opportunity will never come to pass. In our day-to-day living, we tend to spend the majority of time in the future. We have a list of things to do and daily tasks that need to be completed before we can lay our weary heads on our pillows to sleep. Unless you are a Buddhist Monk , it seems next to impossible to live in a state of full awareness of every second and moment of your day. But sometimes, life presents experiences that force us to become acutely aware of how very precious one random and ordinary day can be.  This week, friends of ours were devastated when their young son passed away quite suddenly. He was a child like Meredith in that he faced many, many challenges in his short life,  medical and otherwise. He was born to loving and exceptional parents who described him as possessing  “extraordinary strength, courage and indomitable spirit.” Parents of children who have medical fragility and who have short life expectancies tend to live in a state of ‘knowing’ and yet like all parents, we, too,  get caught up in our day-to-day lives and can just as easily be taken by surprise as much as anyone.

After bathing Meredith this morning, I buried my face into her warm neck and I inhaled. I kissed her over and over  and she made the cooing sounds that she makes when she is happy. And then I started to weep. I wept for the parents of this little boy and I thought of how shocking their early days without him must be. I thought of how this hit so close to home and if Meredith was suddenly gone, how would I spend that “one more day”  if given the chance. This is what I came up with…..

If I had one more day, I would skip the morning dishes, and scoop you out of bed in those early hours when you are still a bit groggy from your night time medications. I would curl up on the couch with you in my arms and wrap us in the crocheted blanket my mother made for me when I was a child. You are so very cuddly in the early morning so I would take advantage of the lack of spasticity and I would hug you tight, kiss the top of your head, gaze into your eyes and stroke your cheeks. I would chat with you about all of the things we would do that day.

If I had one more day, I would get a hold of your bare foot and sniff your toes while exclaiming, “Peee-uuuuu!!!” and pinching my nose. You would smile large at my dramatic inspection.  I would certainly bath you as I love to hear you giggle when I first put you in the tub and you feel the warm water swooshing around your belly. I would not rush and impatiently wrestle with you to achieve the goal of cleanliness. Instead, I would soap up your back and play silly games and take in all of your glorious, crooked body parts. Afterward, I would wrap you in your gigantic towel and tell you how much I love my little mermaid. I would take my time putting lotion on all of you and I would carefully clip your finger and toe nails. On second thought, I would skip the nail clipping as you hate it so much. I would jiggle my body imitating you shivering and you would smile back knowing that I was playing with you.

If I had one more day, I would pay attention to the countless mundane tasks in our day like changing the dressing around your Mickey for the 2800th time since 2004 (give or take a few)  and I would carefully comb your hair watching you wiggle and arch from the sensation of the comb on your head.  After you were dressed and ready, I would put my face up close to yours and tell you how pretty you are. Again, you would smile, because you understand me even though words are not an option for you.

If I had one more day, I would not be in such a hurry for the 9am Family Relief Worker to arrive so that I could get busy with all of the things I need to accomplish in a day. Actually, I would cancel her shift so that we could just hang out on the couch all day, playing and giggling and goofing around. And daddy would call in sick to work so that we could all be together in our house without anyone coming in.

If I had one more day, watching television and checking email and Facebook would not be important or necessary to bide the time. Our time together would be so precious that I would not take a moment for granted. I would be conscious of every second and everything you did in that time. I would study your little hands and how they open and close like a sea anemone. I would examine your ears, eyelashes, lips and your little nose as though I were a scientist and you were under my microscope.  I would sniff your neck and try so very hard to remember your smell because it is ‘your’ smell and I would know it even if you were lined up with 100 other children and I was blindfolded.

If I had one more day, we would read more stories and repetitively play with the toys that you love but that give me a headache after a while. We would also sit in silence and I would listen to the sounds of your breath and the unique murmurings you make when you are content and sitting on the lap of someone you love. I would play the “I Love You” game over and over as long as you smiled over and over. I (pointing to myself) Love (placing my hand over my heart) You (placing my hand on your chest)! And then the reverse: And You (pointing to you) Love (placing my hand over your heart) Me (placing my hand on my chest)!!

If I had one more day, I might not put you on your floor bed as much so that I could get a load of laundry folded or get supper started. I might lay you on your floor bed to give my arms a rest but then I would lie beside you on the floor and read stories or blow bubbles or whatever. I would lay my head on the pillow beside yours and watch you checking out my face at such close range. I would hold a mirror up in front of us and observe how perfect your skin is while mine is really starting to show its age. I would watch your reaction when you can see yours and my reflection in the mirror side-by-side looking back at us.

If I had one more day I would tell you all of the things that sit in my heart. Even if you are unable to understand all of my words, I would feel good knowing that I shared them all with you. At the day’s end, we would lie you on your floor bed and eat our dinner in your room while sitting on the floor. We would sing songs and play ridiculous games because your dad is the absolute best at creating ridiculous games. You would vibrate from overwhelming giddiness and soon it would be time to get ready for bed. I would make sure you had on warm socks  and I would wrap you in a soft blanket and hold you until you started to nod off. Rather than putting you into your bed at your usual time, I might just sit and hold you a little longer if I had just one more day.

There are never enough moments. There are never enough hours and there are never enough “one more days” to sustain us when we are forever separated by death from the ones we love and cherish. So even if magically we were given one more day, it would never be enough.

What we do have is THIS day and if you are blessed enough to have your loved ones surrounding you, healthy or not, spend one day living as though it were your “one more day.”

Why?  Because you can.

I dedicate this post with love to Connor McHardy and his parents.

 
 
Grand View
Grand View is a source for support and acknowledgement of a Grandparents loss of their dream for a healthy grandchild.

When a lethal, life limiting illness, of a grand child occurs, attention for care and support most often is given to the parents, as is should be, however no notice it taken of a grieving or a brokenhearted  grandparent for the loss of a dream for a healthy grandchild. It is known that in some instances Grandparents my often be disregarded, made to feel they are in the way, but they are not outside the, pain of being disheartened, and even joy brought about by the birth and growth of a grandchild who has a disability.

Grandparent’s hearts are doubly heavy not only for the loss of their grandchild, but also for the pain that their child is enduring from this devastating situation.  Bereaved grandparents are also in need of support during times as these. In many situations they take on the responsibility of caring for their adult child’s needs for comfort as they are in their own journey of grief.

Grandparents who are willing and able many times do a great deal to relieve parental stress, or bereavement associated with the loss.  Grandparents may share coping strategies, assist with errands, shop, find helpful information, help connect with community services related to disabilities, or bereavement. Grandparents provide childcare; some go as far as getting certification to provide respite care.

As you can see Grandparents are essential to the wellbeing of the family in many ways. You need not be alone in this situation there are support and resources available to aid in your journey.

Online Resources Ehow Family

http://www.ehow.com/info_7861097_support-groups-raising-grandchildren.html

 

Grandparents.com

www.grandparents.com

special-needs-grandchildren-tips-for-parents

 

 Grief Watch, Your resource for dealing with loss

The Grief Watch site was created to provide you with bereavement resources

www.griefwatch.com

Helping a Grandparent Who Is Grieving Article by Alan D. Wolfelt, PH.D

The Grief of Grandparents article by Compassionate Friends

Aloha Remembered Blog: Have your grandchild’s name written in the sand and a photo posted on their blog.

        

Stepping Stones article: Common Signs of Grief

        

Grieving Grandparents Bereavement Support Article

        

Remembering Our Angels: Gifts and ribbons for purchase.

 
 
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