Monday, February 7, 2011

Here I go.....

Well, this is my first blog. I have been thinking about this for a long time but just haven't had the courage to do it. Not sure why today is different, but here I am.

My name is Cori and my blog is about life with my wonderfully fabulous 10 year old son Nicholas, my beautiful 6 year old daughter Maddie and last but not least my husband of 12 years Ray. Now, you ask why would I blog about my family and why is my blog called Life is GREAT!, Different, but Great!? Sit back and relax....

In 1999, My husband and I were beside ourselves when we found out we were expecting our first child. It took us over a year to get pregnant so when it happened, it was a real joy. The pregnancy was typical from everything I had read. All but one thing....Ray and I were terribly sick with a flu at about 3 months into my pregnancy. We were really down for about a week. I had a pretty good fever which never seemed to break for days. Ray and I just laid on the couch and slept in between bathroom trips for everything you can imagine. I called my OB doctor at the first signs of this flu and was advised to take Tylenol and that was all I could do. After about 6 days in, they prescribed antibiotics. We did survive the flu and thought nothing more of it afterwards. I do remember one thing very specifically during that flu, and I informed my doctor at my next visit. There was an incident where I felt my unborn baby kicking so fast, almost spasm-like, for a brief period. It never happened again and the doctor didn't think anything of it.

We were beyond excited when we went to our first ultrasound at around 23 weeks. Our doctor believed in waiting a bit longer for the first ultrasound so that he could read more clearly the ultrasound and all the details. I did have the early on vaginal ultrasounds and the baby was fine as well as were my monthly check ups. We will never forget seeing our baby for the first time and couldn't wait to find out if we were having a boy or a girl. The ultrasound technician told us what everything was, "here are your baby's fingers, toes, eyes" etc. Everything was there and seemed fine. I remember how wonderful it was to finally see this perfect living thing that I have been feeling nudge me for which seemed so long at that time.  After reviewing everything, she told us she wanted to get the doctor.

When she left the office, we still didn't have a clue anything was wrong. Now in hindsight, it isn't typical that you see the doctor on a visit for an ultrasound. While we were wating, Ray and I chatted about how we would decorate the nursery if it were a girl or boy and I believe we might have mentioned, what if there is a problem? But we quickly dismissed this idea....Nah, we don't have a history of anything in our family, everything has been just fine.

My OB doc came in and said, "what the technician is seeing on the ultrasound is this area".... I was thinking...the technician didn't tell us anything about any concerns so this was news to us. I think the doctor thought we had already discussed the area of concern with the technician already. He showed us an area in our babys' brain that was called an "enlargement". An area of spinal fluid had pooled in this area and it was in his left posterior ventricle. He said it might just be a cyst and some of those just disappear but he couldn't be certain. I don't remember much more of that appointment except that we were having a baby boy.

From that moment on, our lives were never the same in so many ways. I truly don't think I have ever in my life cried like I did that day and thereafter. It was the type of crying that comes from so deep within your body that you cannot control it. Complete and utter emotional breakdown is what I am sure it was. My sister felt much of it on a phone call to her when we got home from the doctors office. I sat on the corner of my bathroom floor in the fetal position screaming and crying.  My husband and I were so devastated. The very next day we went to a high resolution ultrasound at the High Risk Perinatal office and had an amniocentesis. We spoke to a genetic counselor afterwards who gave us another set of possible diseases and syndromes that our beloved baby could have. Again, complete and severe devastation.

Our son was assigned a Neurologist whom he has had since birth and to this day is wonderful. He told us that possibly with my flu, our child had suffered a stroke in utero. Which could be the reason I felt the spasm that my dear boy gave me when I had the flu. Our amnio was fine and so were all the other tests that came after. Nothing hereditary, nothing syndrome-like. My flu was the probable cause. The guilt I bore for years was tremendous. Why couldn't it have been something other than me not being healthy. I was otherwise the perfect pregnant woman. I didn't even have coffee for 9 months, which was a true test of my strength.. lol, or an ounce of alcohol.

We were given a 2 week window to make a choice whether to continue with the pregnancy or terminate. It was the most difficult time in our lives. Everyone gave opinions, some who shouldn't have and some who said whatever we decided we would be supported. Every time my baby boy kicked inside me, it was a gentle reminder about the miracle little life that was growing and deserved a chance to live. We decided to have further testing to help determine if our baby was brain dead or not.  We found out he wasn't but that he would have many challenges. This was all we needed to know and we chose to have baby Nicholas. He was named after the Patron Saint of Children, St. Nicholas. We knew he would need to be watched over by someone greater than just us. 

He was born June 20th, 2000. It was a scheduled C section. Not because we had to, but we elected to considering he was already at a disadvantage coming into this world. We didn't want complications with a normal vaginal delivery. Nicholas was crying and thriving when he was born. We were so thrilled. Other than a bit of a large misshapen head and low blood sugar, he was great. Beautiful blonde haired, blue eyed boy. After 5 days in the hospital NICU he came home on an apnea monitor as a precaution.

This is when we started our new life together as a family. We have had many ups and downs. I in particular went through some depression. Mostly due to the fact that my close friends had babies at the same time who were perfectly healthy. I was in misery.  Ray seemed to handle things very well as he always does. As for  Nicholas' development during that first year, it was fairly typical with the exception that his milestones were delayed. He was a very happy and chubby baby.

Once Nicholas hit his first year birthday, we thought something could be wrong and he might be having seizures. His doctors told us to always be on the look out for signs of seizures.  He had been rubbing his eyes a lot and was sleepy more than normal. We took him to his Neurologist who ordered an EEG and quickly determined that he was having hundreds of seizures daily. Another devastating day for all of us. Nicholas went on seizure medication which took quite a while to get the right levels adjusted for his little body. Much of the time he was drugged out and his smiling happy face was no longer there. It was if the light was shut off in his eyes. You can see this in our family pictures especially when you compare pre seizure medicine days to post seizure medicine days. Very sad to witness this. And so it began...

From then to now.....

There is just no way that I can possibly cover what has happened from then until now. I am not even sure why I have started this blog now and not then. I just know that it is the right thing to do in my heart. I truly believe that losing my job last fall has helped me take the plunge. It was probably the best thing that has happened to me.

After years of testing, various seizure meds trials, a bookcase filled with a special needs collections, a Vagus Nerve Stimulator implant to help control his seizures, ear tubes for infections, a G tube to help plump up my baby boy, a multitude of durable medical equipment changes and a cemetery of old DME in our garage, adapted toys, adapted house, incontinence supplies up the ying yang, enteral feeding supplies, autism Dx, epilepsy Dx, legally blind Dx, cortical visual impairment, CP Dx, Peri Ventricular Nodular Heritopia (brain Dx), clonus, major ankle pronation with braces to correct, scoliosis Dx, a few 911 calls, only 2 admits to the hospital, MANY IEP battles, advocates, TARS, IHSS, Notices of Action, Mediation, multitudes of therapy, OT, PT, Music, Music for Modulation, horse back riding therapy, xray's, blood draws,  tons of needle sticks, .... on and on.. we have made it to 2011.

Our daily life is crazy to some, but normal to us. With Nicholas undergoing a major scoliosis correction surgery on March 25th, I think it is time to blog. Not that you will find what goes through my mind interesting, but you just never know what tidbit I might be able to share with you that will help you in your situation. Although I only hold an official A.S. degree, I have a few others in the college of LIFE. -- A Doctorate from "Nicholas Medical School" and of course my degree in Child Advocacy Law specializing in Special Education from the "Asbell School of Law".

In my blog you will learn about my family. My awesome husband Ray whom I call lovingly my 3rd child, my beautiful daughter who without her, life would be so much more difficult, and of course our angel Nicholas. Living with a child who has many special needs and daily challenges has made us not just bystanders or spectators, but participants in life!

Join me on this journey. I can't promise much, but one thing for sure, I will promise some levity, much reality, from-the-heart-speaking, lessons learned, tips and tricks and serious blogging about Nicholas' upcoming scoliosis surgery. This blog is for everyone and anyone who has either chosen to be a part of a life of someone with special needs or for those of you that are lucky enough to have that person choose you.

Welcome to Holland


  1. Sister,

    What an amazing story and I'm so glad your sharing it with the world. We all know how precious our boy is and how strong you & Ray have been, but to shar this with other famiies who may be going through similiar situations, is such a selfless act. I love you SO much and I can't wait for the next blog. Kiss our boy from us!


  2. My adopted sis,
    You've continued to inspire me since we met when I was like 10 or 11!!! I will continue to read your blog. It's a nice reminder of how precious life is. You and Ray have handled the task God has given you with Grace. I've always said that God knew exactly who he was giving this precious Gift(nicholas) to. He chose the right family. Much love.

    lil sis, Michele

  3. Cori,

    You are definitely an inspiration to me....


  4. Cori,
    So heartfelt and beautifully written. We love you all.

  5. Cori,

    I happened upon your blog through Karen Stengles FB, I do not know you but I am crying as I am typing.... your heart is a wonderful tool to help educate and empower others. Thank you so much for sharing!!

    Dana Kelly-Manternach

  6. I love your blog, Cori. Thank you for sharing your beautiful family. Your son has a lot to teach us all, and you've chosen the perfect words to place him in my heart.
    Susan Barrett Hyde