What our life feels like.....now......

The other day I came across this article and it really says everything we, especially I feel since our beautiful Lauren left us.

Examiner.com

• FAMILY & PARENTING
• JUNE 11, 2009
• BY: CAROL A RANNEY
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The death of a special needs child is perhaps one of the most complicated to mourn and heal from.  If you are or have been the parent of a child with exceptional needs, whether mild or severe, you know that you are by necessity far more involved in that child’s life than you are with a normally functioning child.  Whether it means therapy appointments, school meetings, medical appointments, counseling appointments or all of the above and more, parenting the child who has special needs takes time, commitment, and intense personal involvement in every aspect of the child’s life.  I can remember periods of time when I had some child-related appointment every single weekday of the month.  There is little time for a personal life—taking a bath becomes a luxury!
The stresses of parenting are greater, as well.  If the child has a mild disability and “looks normal,” it may be difficult to explain to others why the child nevertheless needs extra assistance, extra attention, or special accommodations.  If the child is obviously severely disabled, the reactions of others can be wearing, along with the physical work of caring for the child long after his or her peers have run out the door on their own.
However, most every parent will also tell you that nurturing a child whose tiniest gain is a huge triumph has changed their whole perspective on life, making them slow down, appreciate the small things, and given them huge rewards out of all proportion to the work, time, and love they have invested.  If you are such a parent, you have been witness to courage, strength, patience and endurance that make every moment invested worthwhile, and have discovered in yourself new levels of love and commitment that you never would have thought possible.  You have not only sustained a fragile life, but have watched it blossom under your tender care.  Your child has revealed to you your full potential, just as your care has allowed your child to reach his or her own full promise.
The death of such a precious and unique child, whether in infancy or adulthood or somewhere in between, is nothing less than the death of a huge part of the parent’s life, as well.  Because of the extent of the child’s need, your child has likely become the center of your world—the reason for getting up in the morning, the catalyst for the creativity and problem-solving of every day, and a huge source of love and satisfaction, as the parent remains the central figure in the child’s life, often for decades.  You are not only devastated with grief at the loss of your child, but have also lost your vocation in life, the central part of every day’s activities, the source of unconditional love, and the one who most appreciated and accepted you.  All the experience and knowledge that you had acquired over the months or years now seems irrelevant, and you may feel yourself irrelevant, as well.
Often your friends have become chiefly those in the special needs community, a place where you no longer “fit.”  Much as other special needs parents want to empathize and continue to include you, unless they have also lost a child, it is an awkward situation.  In addition, the responses of others to your child’s death may be entirely inappropriate.  When my son suddenly died at age 13, a man said to me, “Maybe it was a blessing in disguise—or not even in disguise.”  He was referring to the fact that my son had had some social struggles through his life, and had life-long medical issues.  This was a man who was devoting considerable time to caring for his 90 year old mother.  Two weeks after my son’s death I was asked, “Are you over it yet?”  The hurt in these remarks, to me, was the realization that people apparently had not considered the life of my son of equal value to the life of a “normal” person.
People also may assume that it is a “relief” not to have to care for the child any longer.  They may convey their feelings that the child was suffering, that there was no “quality of life,” or that the child is now released from a restrictive existence.  These assumptions are an affront to the parent who has devoted a lifetime, their child’s lifetime if not their own, to providing the best care, the least suffering, and the most joy that was possible.
Quoting verses from the Bible is also a means people use to try and offer comfort.  However true these timeless truths may be, there is a time and place for everything.  Generally, people are not comfortable around the grieving; they want things to be “back to normal,” for your pain to end, to make things better, and thus try subconsciously be more comfortable themselves.  However misguided, most people are making an effort to be comforting.  If you are able to hear the remarks people make and consider the source without taking offense, you are a rare person indeed. 
If you are able, find a support group such as The Compassionate Friends to attend, where other bereaved parents will not have made prior assumptions about your child.  You may also join an e-mail support group, Loss of Our Kids (LOOK), specifically for parents who have lost special needs children.  Contact Frannie to request to join.  Broken Hearts, Living Hope is a free monthly newsletter where you may share your story and network with other parents who have had similar losses.  Download a subscription form from the website, or email your request from the site.
Be assured that your child was unique, precious, and infinitely valuable, for as long as he or she lived.  Often the most obscure lives have the greatest impact; we will never know the full influence of our child’s life on others until eternity, but we can guess, from the impact that they had on our own lives, that theirs were lives of purpose that no other life on earth could have replaced.