I just remembered that there are some other poem type things that I have read over the last 7 years that I think give people some insight into how Paul and I feel. Sometimes hourly, daily or maybe weekly......I know alot of you who have written in response to the last posting said you had tears in your eyes......sorry this may be another one.....its abit long to so prepare yourself for abit of a read.....
That picture is of Elle just goofing around....crazy girl!!!!
Thoughts of a Mom By Maureen K. Higgins Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.We have learned to deal with the rest of the world, even if that means walking away from it.We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.We have tolerated inane suggestions and home remedies from well-meaning strangers.We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
My life will never be the same again
by Cheryl Magnussen who dedicates this to her daughters Allie & Angel God made a living miracle
with his very own paintbrush.
As each stroke of His hand
touched upon the canvas
He created a child;
one that He loved so very dearly,
one that He knew would change the hearts
of everyone who took the time to know her,
a child who would show this world
countless unknown miracles,
….a child with special needs.
God must love me so very much
as He trusted in me
to become the mother
of this sweet angel child.
In doing so
He gave me a new life.
One that slows the clocks of time,
teaches me to pause and smell the dandelions,
shows me there is beauty in a goat
and has me catching snakes to revel in their colors;
a life that grants me lessons in respect,
true courage, humanity and advocacy.
God rescued me through this child
and ever so thankfully…..
my life will never be the same again.
Kaden: He was abit sleepy today. I think it may have been due to his Phenobarbital mini load he had yesterday. His blood level was only 30. I tried the new Acucheck machine.....compared it to the hospital one.....lets just say they both said different numbers and they were not close to each other......(sorry!! checking Kadens blood sugars) It is still up for debate who's was right. We will find out tonight.
We are suppose to be having a meeting on Dec 17th regarding discharge from the hospital. We are now facing the possibility of having to fight to keep the oxygen and laerdal bag (use the resuscitate) in the house. They are wanting us to resuscitate with room air.......WE DON"T LIKE THAT IDEA!!!!!!!!!!!! Having a child with medical issues is a constant fight that will continue far into the future....we get tired of fighting and wish we didn't always have to go through this....our life is difficult enough let alone having to play this political battle all the time.....
Elle: She is looking good!!! Still isn't back at school though. At 7am this morning she had a major crisis in her bed......Formula all over her bed.....the tube came disconnected from her button attachment and dripped all over her and the bed!!!!! Bathing her at 7am is not my idea of fun but I guess the bright side to that is we don't have to do it tonight!!!!
Is everyone done Christmas shopping??? We are still no further ahead and we may actually be officially behind!! Running out of ideas, time and energy......then I have to find time to wrap all that stuff.......
