Wednesday, September 29, 2010

For My Sisters

I totally stole this from my girl over at Kidz a connection for inspiration. I never in a million years thought I would be a part of this sorrority but I am.  I was welcomed in on that hot day in July of 2008 when as I was laying on an Ultrasound table watching my Sweet Ethan move and heard the mumblings of a Doctor who told us he didn't have a life worth living.

I know a lot of you Mama's will relate....

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 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 ungergo 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 physiatry. 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.

By Maureen K. Higgins

Sunday, September 26, 2010

We take care of our family...

That was the response given to me this morning after church.  You see, our Youth Group had a BBQ fundraiser today and not to raise money for themselves.  They did it for Ethan.  Amazed, thankful, humble and blessed - those are feelings that our family feels about our wonderful family, our church family.

I was trying to mingle the room and thank everyone who had helped put the fundraiser together and when I was hit with that response - We take care of our family, I have never felt more blessed.  Thank you, First English Lutheran Church Youth Group.  Your kindness, selflessness and love will never be forgotten.

Friday, September 24, 2010

Heartbreak and Reality

When we first heard the diagnosis of Probable Mitochondrial Disease, I did what every good mother did...I goggled it!  What I found was scary, dark and I felt helpless.  I began religiously following blogs of Mothers who had Mito Kids so I could see if Ethan looked like, acted like or seemed like a "Mito" Kid.  He did, he does, he will but for now according to Dr. Shoffner, our diagnosis is Possible Mito not Probable.  We are still awaiting 2 tests to come back on the rest of the muscle that was left frozen in Atlanta to confirm that it is not definitely Mito.  His labs just came back from our visit with Dr. Bodurtha and his lactic acid is still elevated but we don't know why...

I have fallen in love with some great Mito Mom's and their families and one such family is the The Knight Family.  They have two beautiful children, Lauren and Samuel and both have Mitochondrial Disease.  Samuel just turned 4 at the beginning of the month.  Last night, Samuel went to be with Jesus.  I read this update on facebook this morning as I was driving into work and I had to pull over to compose myself.

I trembled with fear, heartbreak and I felt so ashamed.  Ashamed because of the complaints I had made last night of how I felt so overwhelmed  with everything that I have to do with only 24 hours in a day.  The constant doctors appointments, work and so on and so on. 

Reality set in very quick and I became thankful to our Lord.  Thankful that he has a plan for us and for these sweet children.  It is not in our control, I am reminded of that daily when I look into the eyes of Ethan.  In times when the fear surrounds me, I take comfort in Jeremiah 29:11 - For I know the plans I have for you...

Will you pray with me today for this sweet family...

Rest in Peace Sweet Samuel....

Tuesday, September 21, 2010

Early Birthday Gift!

Remember when I blogged about this:

It arrived and we just couldn't wait until December 5th to give it to Sweet Ethan ....

It came in lots of pieces.....

Jake concentrating to get it put together just right...

It's coming together...

Gracie came in to supervise...

And decided it needed a ladies touch...

This guy loved his bike so much that he drooled all over the place....

And when it was all said and done, he loved on his Big Brother for putting his bike together!

Wednesday, September 15, 2010

And I cried...

So, after Ethan's big surgery (you know the one he had at 3 months when they repaired his kidney obstruction, gave him blood transfusions and revived him not once but twice) we came to the realization that Ethan not only had some medical issues we were going to have to deal with but he had some developmental challenges.  I remember laying in bed one night, crying for what could have been, for what should have been and what wasn't going to be.  I feel asleep that night praying that God would give me an answer.  I prayed for his guidance and help.  The next morning I set out to find help and as he always does, God led me right where I needed to be....

I still remember the day that his "team" came to our home for the first time.  So, I was slightly overprotective, OK, really I was way overprotective.  I remember thinking to myself that I have had 3 kids, do I really need someone to come to my home and tell ME how to help my own kid. Ha!  Well, the truth is, I did.  Dealing with a child with Special Needs is like being a 1st time Mom all over again.  I had lost all self confidence in my Mama Skills.  I couldn't help my child do simple things like lift his head, roll over, eat, crawl or stand.  I was lost.

Until I let Mrs. Vicki, his Occupational Therapist into his life. Once I got over the fact that I needed help, that is. She made me feel confident again, she answered all my questions, gave me ideas about how to help Ethan and always treated him with so much love and kindness. Even when he wasn't "feelin" it. I'm not sure how I would have gotten through 18 months without her. 

Ethan is transitioning to Physical Therapy and today was Mrs. Vicki's last visit with Ethan.  And I cried...yep, sure did. But I wasn't crying for what could have been, for what should have been and what wasn't going to be. I cried because I'm gonna miss her, I cried for all that he has accomplished and I cried because I know in my heart God has sent her to our family to help us so that I could become this confident Mama again...

Thank you from the bottom of my heart...

Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus. 1 Thessalonians 5:16-18

Monday, September 13, 2010

Teal Toes

September is Ovarian Cancer Awareness Month.  Did you know that?  Do you know what Ovarian Cancer is?  I do, I know family members, friends, bosses, real woman, young and old who have lost their life to this deadly cancer. I'm at risk...and you may be...

Even in its early stages ovarian cancer has symptoms. Research indicates that 95 percent of women with ovarian cancer had symptoms and 90 percent of women experienced symptoms with early-stage ovarian cancer. Symptoms vary from woman to woman and many times depend on the location of the tumor and its impact on the surrounding organs. Many of the symptoms mimic other conditions such as irritable bowel syndrome.

The Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists and the American Cancer Society, with significant support from the Alliance formed a consensus statement on ovarian cancer. The Ovarian Cancer National Alliance has endorsed the consensus statement, which was announced in June 2007. The statement follows.

Historically ovarian cancer was called the “silent killer” because symptoms were not thought to develop until the chance of cure was poor. However, recent studies have shown this term is untrue and that the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:


•Pelvic or abdominal pain

•Difficulty eating or feeling full quickly

•Urinary symptoms (urgency or frequency)

Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms.

Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.

So if you are getting a pedi this month, why not get 'em painted Teal to show the world you care...to learn more go here ....Teal Toes

Tuesday, September 7, 2010

Back to School....

Today was Back To School for The Hamilton Kids....

Jake AKA "Cool 4th Grader"

Gracie AKA "Sweet 2nd Grader"

Anna Claire AKA "Sassy Pre-schooler"

And of course we can't forget this Sweet Boy who is loving his new Personal Aide/Nannie more and more every day!