Quote From: specialneeds In 2007 our daughter Kaitlyn was one of 5 children recognized as
a "Hero for Ability" . She was Microcephalic! The
doctor's only expected her to live one day, one week, one month but
never 6 years 1 1/2 months later. She passed away June 17, 2008!
As a parent of a severly disabled child, seizures, tube feeds,
suctioning, visual impairment, hospitalizations and on and on...I can
truly relate to what your going through.
I would like to share with you the speech that I shared at the above event to 300 guests.
Thank you for recognizing our daughter, she is truly our hero!
I would like to start by saying that we do not feel anymore of an
inspiration than other parents who love their children. If we are
an inspiration for loving our child unconditionally and being proud of
her and encouraging her, then all parents who love their children
unconditionally should be looked upon as an inspiration. We are
proud of Kaitlyn, who she is as a person just as we are proud of the
differance she has made.
The #1 thing that I find to be true is that children with extra
challenges give us a greater sense of gratitude and appreciation for
everything in our lives.
We suffered a great deal upon Kaitlyn's diagnosis. We did not
eat, we did not sleep, we could not concentrate and life seemed like it
wa ending, but everyday we still kept waking up.
Nevertheless, after the pain, the shock and the devastation...there is
a unique strength. We have learned to appreciate and value life
in ways that we did not in the past.
If I had to say one thing that I wanted people to know about my life
with Kaitlyn it would be that she has touched my very soul, the core of
my being. We have the greatest gift of all that some people may
not recognize and many do not recognize it because they have never had
the opportunity to experience Kaitlyn. I used to feel sorry for
families that have children with a disability, but I do not
anymore. In fact, I think we are to be envied because we have
found the secret of life in our children.
I think many of us go through our lives only using a portion of the potential we are blessed with.
Kaitlyn has taught us to slow down and look for things that are
beautiful and wonderful regardless of how small they may seem.
She has taught us to appreciate and accept help when it is offered and
because of this we look more readily for ways we can be of help.
She's taught us that what's on the outside isn't always reflective of
all that's there and we find ourselves looking more closely at
situations now to see what may be there that we just weren't seeing.
We have learned how strong we can be and at the same time how
vulnerable and afraid. Kaitlyn has taught us a better way to
approach life and in doing so we try to make ourselves as well as
others around us better.
We try to empower other parents through mentoring and participating in
workshops. We pray and we have an amazing support system.
For me, my husband has been my pillar of strength!
We have had extensive early intervention from the beginning of our
journey with an amazing support system in our medical community.
Infant Development, Physio, Occupational, Speech and Language, Vision
as well as many other developmental therapies and workers.
It is only because of the amazing support team that we are standing
before you today. These teams of professionals that work daily
with Children with Special Needs and their families, They have a
gift! Not only do they make a difference; they do not expect
anything in return.
Our life as well as many others has been enriched because of their Commitment and Dedication.
Is that not worth something?
I think it is!
As parents, we have advocated at great lengths not only for our child
but for other families. My child may be gone but her memory will
always be alive because of everything she taught my husband and
I. Because of my child and what she taught me during her
life....my life is changed forever.
You only have each other and while it is a difficult journey..don't
give up on each other and what brought you together in the 1st
place. Enjoy whatever precious time you have with your son
because the decisions you make now will affect you for the rest of your
lives.
God Bless you Both, I wish you the best!
Sincerely, Suzana
Thank you so much. I too had a daughter that was ill and passed September 3, 2005. My daughters name is Jessica Caitlyn and she was born with a severe, rare and terminal illness. She was expected based on the 7 cases in the world prior to her to live maybe 1-6 months; yet with faith, love, relocation to a better medical facility, my lack of backing down and some luck she lived 15 years.
I appreciated reading your speech. It is very difficult to put into words what life as parent has with a severely disabled child is like. My life has been changed, I am a better person just for knowing my daughter. She taught me, as well as others, kindness and quiet strength during adversity. My daughter taught me not to whine, life really is short and to ALWAYS say what you mean and mean what you say.
Jessica's father could not handle the responsibilities of have a sick child, leaving the job to me. I believe people are a hindrance or a help. It was not easy but a journey. If you can support each other through the difficult or mundane every day tasks, great; if not then separate. Don't subject the child to the turmoil of emotions. Just my humble opinion.
Before I lost my daughter I met a great man who accepted all her physical and mental abilities and did not run. I was shocked at the ability he had to accept her and me as "messed up" as we both were. I figured out later that she waited to pass away until I had found him, she let go when she knew that I had someone to lean on, someone to support me when she was gone. I could not or would not have survived her death had my then boyfriend and his family not been there. My heart was so broken, I loved her so much.
Watching this show taught me that others feel betrayed, there is no complaint line to say, "Hey God why did you give me a broken child? This was not what I was planning during pregnancy!" There is no return line! And the odds of getting a child like my daughter was less than hitting the California lottery of 90 million. So where do I email about getting the healthy child and the lottery money instead? I HATED being told that I must be so strong or that I would not have been given this unless I could handle it. I was not handling it, I was struggling each day. I hope that others will find strength in posts like these. There is respite care, there is community services, and there is hope.
These times are a compliment to YOU from God. If he didn't love and believe in you, he wouldn't give you challenges. These are opportunities for grace. From a Nora Roberts novel.
(Original Air Date: 04/02/08) Is your life in the ditch, and you can’t see a way out of the quagmire? Dr. Phil's guests say they've lost money and careers, and now they fear losing their family. Lisa says she feels betrayed because her estranged husband, Anthony, is leading a double life. She says Anthony had a great career as an accountant, but was secretly gambling their money away. Now he’s jobless, homeless and living in their minivan, which is about to be repossessed. Anthony invited the Dr. Phil cameras along to capture his life on the streets, and you won’t believe where he winds up at the end of the day! Anthony says he knows his gambling addiction is out of control and says he wants to be back home with his wife and four kids. Can he cash in his chips for good, or will his addiction cost him his family? Then, Shauna says her life is unbearable. She and her husband, Kevin, have filed for bankruptcy, the IRS is knocking at their door, and they’re taking care of a terminally ill son. Shauna says Kevin’s heavy drinking only adds to the chaos, but Kevin doesn’t think he has a problem. Is Shauna overreacting, or is Kevin an alcoholic in denial? Can this marriage be saved? Tell us what you think.
