What We Call Miracle Day

This year is different for me ...in so many ways. As most of you know this past year has been hard . I had no idea last year when I posted Philip's Miracle Day post how much things were about to change.

In the year that post was written..I have been diagnosed with Cancer and Philip's health has become a daily battle. He has had many operations this past year...and now has a pain pump ...and a special machine that pumps meds straight into his spine and brain. While all of this has been really difficult. The hardest of all is my sweet nephew dying a few weeks ago.

Yesterday I could not stop the tears...just a few weeks ago I was so excited to have him dress up in his Halloween outfit I had gotten him. Looking forward to pictures. And so looking forward to seeing him and spoiling him rotten over the holidays. Yesterday was the start of so many first without our Jackson . Once again I ask you to keep my sister and Derek in your thoughts and prayers. They miss their baby .

So I hope you will not mind if I just copy the story from last years post and add a few thoughts. For me it is such a important special day. We were so very blessed that day. And yet today I just can not dig deep and re live it to tell the story the way I would want to. I am pretty sure you all understand why. It is just painful right now....and yet we are so thankful.

When I look at this picture I get such a mix of emotions. For those who are new to the who and what and why. I would love to take this chance to share a little bit about the sweet boy in this picture Philip and how blessed I am everyday to be his mother.

This picture was taken the day before his "Miracle Day". When my first son Philip was born I knew that I had to be the most blessed women in the world, and sure enough I am. After three Miscarriages I just feared in my heart I would never be a mommy. God blessed me with a baby who we named Philip James. The very first time I saw him I just KNEW God handpicked Philip to be my son.

A few weeks after Philip was born he became very sick . We spent weeks trying to find out what was wrong with him. After being airlifted to a out of town hospital it was found that Philip had a mass in his brain. Philip had his first brain operation at six weeks old. While I felt a little worn as a mother, I felt blessed that we had put this behind us and could now enjoy being a new family. Or so we thought.
Philip's brain mass came back and at the age of six months it was decided that the only choice we had was to have another brain operation on Philip and this time not only try to remove the mass but to place a shunt. While we were scared we felt somewhat prepared having been through it before. This operation was nothing like the earlier one.
Philip celebrated his first Halloween at Arnold Palmer Hospital dressed in a cute pumpkin diaper cover. Philip hooked up to a IV pole got to go to his first party to see the older kids dressed up on the floor. And something that I always remember. If you look close in this picture, Philip had his first Popsicle on his first Halloween , hours before our lives would change forever.

The next morning we handed our sweet son to the surgeons and trusted like before that after a few weeks in ICU on the vent and some time on the peds floor. We would put this behind us and move on being a "normal" family.
After five hours in the operating room the nurse called to tell us that things got tricky. I think back to what I must of thought when she said that. I have a feeling I was not as aggressive with the questions as I would be today. Us moms of children with medicals issues learn fast to speak up and demand answers.
After thirteen hours Philip's team of doctors came out and told us....we just do not think he will live through the night. The DR said it was like cutting through a jungle and he just could not be sure what he cut through. If he does he will not wake up and decisions will need to be made. There was more...and I admit that after hearing the first part I probably did not listen too closely.

For months and months we lived in ICU. I lived in the waiting room with two chairs pulled together , scared to leave him in case something bad happened. Philip was blind for 17 days after his operation and we waited in a MRI room waiting to see if they had cut through his optical nerves. Thank God they had not and it was severe swelling. After being weened off the vent Philip had to learn to nurse again due to suffering a stroke on his right side. The list goes on and on. And in truth the list is still going on.
The idea behind this post is simple. The picture above was taken the day before our lives changed forever. But that picture does not make me sad. Okay ...it does some days. But most days it makes me smile. Wanna know why?

The picture above was taken the day we were blessed with our Miracle. Philip's life. Philip lived and he still lives.
I often say I wish I had known ....if I only knew what was going to happen. Thank you God for not letting me know. Thank you for allowing me to have that first Halloween with Philip and watch him have his first Popsicle. Thank You God for sparing me the knowledge that here we are years later dealing with almost 20 brain operations, 2 shunts, stroke, over 25 painful orthopedic operations, seizures and the recurrences of the brain mass. If I had known all that in advanced I might of missed enjoying the sweet simple things worrying about all the big scary things.
our special day ....we call Miracle Day..every Nov 1st. Philip lived and he still does. Thank you God for blessing us.