Jarrett's Diagnosis

I have to say, blogging has been an amazing way to put my thoughts out of my head so I can sleep better! It has been almost 2 years since Jarrett was diagnosed and I keep going back to that day over and over again. SO let me tell you how my life was forever changed.....

It was December 17, 2008, I was working that morning and was scheduled for my 20 week ultrasound that afternoon. While at work we were preparing for our Christmas party and everyone was bugging me about whether I would find out the sex of the baby. Jason and I never found out with Tyler, our first boy, so why ruin a good surprise. Little did I know the Lord had more in store for me! I drove to University Medical Center at Princeton like I had done a few years prior for my first child and I knew the drill. Lay flat on the table, cold jelly on the gigantic tummy and viola....my precious angel on screen moving and shaking around.

This ultrasound was no different than the 15 others I had been through before, but somehow I was uneasy. The tech kept measuring the head, then she would measure the spine too. Over and over again and printing dozens of pictures as well. It was taking a lot longer than I had remembered, so I began to worry. I could feel my breathing become faster and my heart rate was definitely elevated. The tech looked at me and said, "I will be back, I have to talk to the doctor and then he will be in."

I laid flat on that table for 45 minutes just waiting. Tyler was at ore-school and I had to leave soon. I could not predict what was to happen next. The Asian doctor came in and started to scan my abdomen. The he said, "Oh dear we have a big problem!" A problem what the hell are you talking about??? He said in his broken English, "you hearda Speena Bifda right??" I looked at him and said, "what? What is that?" He proceeded to tell me the baby had a hole in his back and the baby most likely would be paralyzed and have brain damage. He then went on to say my child would never lead a normal life and be a burden to my husband and I as well as to my older son.

I felt like I was in a trance and the tears streamed down my face and I began to feel sick. I has never heard of Spina Bifida before and how did my kid get it! I ate well, took daily vitamins and led a healthy life thus far. I mean a Big Mac once in a while was something everyone does, why was I being punished. The next thing the doctor said was, "you do have the option to terminate. Most women do." I about threw up in my mouth. I believed in the right to choose, but my baby was a living being!!! How could I murder it?

The doctor left the room without saying a word. I composed myself and left the hospital. How do you give someone news like that a just walk out? I immediately wanted a second opinion. Where would I go, how do I go about doing this? Why me? All the thoughts flooded my head as I called my husband and told him over the phone while hysterical crying. Now I had to drive and pick-up my son at school. I honestly do not remember driving that night.

At some point the moron that just gave me the most devastating news of my life called me and said he had set up an appointment for a second opinion at Cooper University Hospital for the next day at 7 a.m. I was relieved he actually left the room to do something, but come on. He could have told me this before he walked away!

That night I could not sleep. I mostly cried, but also prayed every chance I had. For some reason God made me calm and composed and somehow I knew it was not as bad as I was originally told. It is amazing the grace and peace the Lord gives us when we ask Him for it.

My New Passion

Well, my husband is a truck driver and he is back out on the road. I have been blessed to have him home for the last 7 months and as I feared, back to being a single Mom 6 days a week. Feeling anxious and stressed, but know he is doing this because it is his dream and it pays the bills! So i cannot complain. I have to find a way to manage the responsibilty and stresses of 2 children, one of which has Spina Bifida and the other that has way too much energy! I am feeling like a scale with uneven sides and all day I just try to balance it all with a smile on my face and the thought that "I can do this!" Jason called eary to check in on us and remarkably for day 1, we are great! I even got to take a shower this morning!

I recently started going to a women's bible study at my church (Kingston United Methodist Church) and I have to say, Praise God! This is a group of the most extraordinary women, who remarkably deal with so many of the same issues! All ages, kids, no kids, husbands, widowed....it simply does not matter. They are encouraging and supportive and we are all CHRISTIAN!!! No one is judged or ridiculed, it is so positive and just what I needed in my life. I look forward to it every Monday morning and cannot imagine my life without it! I have made great friends and confidants and thank God everyday for these amazing ladies!

I recently spoke to them about starting a fundraiser for Spina Bifida Awarenss and Prevention and one of these ladies has a husband whose running company would be interested to sponsor it! God is so using me for greatness! If I did not have Jarrett I too would be one of the millions of people who had never heard of spina bifida! God willed me to have him and make this what my life's purpose is! That is amazing to me! Talk about blessings in disguise.

I have started a group on facebook to bring together mommies of children with Spina Bifida and the outcome has been remarkable! The stories, both triumphs and heartbreak are incredible! These kids are incredible and so are their parents. I gave birth to my hero! I am so grateful for God placing this struggle in my life. Not only has it made me a better person, but a better Christian and a better Mom. If this blog or the group I started help just 1 person, it is so worth it!

Jarrett, you are a brave, beautiful, amazing, happy, smiling, joyful, funny, loveable, cuddly, handsome, friendly, talented, RESILIANT, proud, silly, wiggly, angelical, hopeful, bouncy, miraculous little boy and I am SO PROUD to be your Mommy!

To my Tyler, you are goofy, handsome, helpful, adorable, energetic, smart, funny, sneeky, adventurous, huggable, kissable, cuddly, talkative, friendly, loving big brother and son. Mommy is so proud of you and all the help and joy you give me everyday!

Snowed In With Thoughts

February 6, 2010

This is my first ever attempt at a blog, so bare with me. I needed a forum to share my mind "junk" and how God is working in my life everyday. I woke up this morning to the fresh fallen snow and was amazed at the glory I saw on my back lawn. There was the boys jungle gym all covered in the fresh fallen snow and I was so grateful. Friday I was sick with a terrible stomach bug and had never felt worse. This morning, somehow I felt amazing.

Jarrett had woken up at 5 a.m. and I scooped him up and carried into bed with me to just rest a bit more. As we layed there he repeatedly babbled "mama, mama, dada...." What precious sounds. Simply music to my soul and my heart! Jason was out plowing snow and Tyler was at my parents for the night, so just my little tank and I in bed snuggling before the start of the day.

This morning brought me back to the long journey we started just over a year ago when Jarrett was diagnosed with spina bifida. How far we have come. Jarrett has surpassed everything we had prayed for and continues to amze us everyday! I think about the good and bad days I had after he was diagnosed. I can remember everyday in the NIC/U after his birth like it was yesterday. Somehow that time came rushing back to me like a flood. Just knowing this little miracle was FINE still amazes me! Then I also recall the day I found out he needed his shunt.....heartbreaking, but I knew that was God watching over him. I spent 3 days in the PIC/U with him and yes I slept in that metal crib each night with my baby! That time with him has been some of the most precious moments I have ever spent with him. The shunt revision in September was hard, but I knew something was wrong and caught it before it could cause any damage. C.H.O.P. is really a gift from above. The doctors, nurses and even the people who take out the trash are amazing and so supportive!

These are things I think about everyday! I hope I never lose touch with those thoughts or emotions. Jarrett and this journey has forever changed who I am as a wife and most importantly a mother. God, I am so grateful for the joy and struggle you give me everyday, thank you!