Monday, October 22, 2012

We Are Here And Doing Great!!

It has been a very long time since I have updated this blog. First off everyone is doing well. Adam is back in school and I kept him in the 4th grade just because the teachers and the nurse all know him well. I am very comfortable with him being there. They know him well and if something is wrong they know what to look for. He is in very good hands at Newport Elementary schoo! Today was a special day for Adam. He got to go see his friends at Drew Intermediate School. Im so proud of how well behaved all the kids were and how excited they were to see Adam. I took many pictures and as soon as I find the cord to put them on the computer I will have them up. It was a very fun and although it was just that I couldnt but help to think I HATE YOU ALD my son should be here with all his classmates in the 5th grade. I quickly pushed those thoughts away and Im just grateful that my son is still here. He is still smarter than ever and remembers everything. Things are getting so hard Adam is getting huge and its getting harder and harder to lift him. Im so afraid that if I let someone else do it they will hurt my baby and then the Wrath of Amber will come out. Alayna is doing well shes still crazier than ever lol.
Adam had a horrible seizure last week and scared me horribly. Im trying to see the bigger picture here and trying to have faith that everything will be ok...but theyre not...I know what the outcome of what we are going through is gonna be, things will not be or alright. Things will not get better they will get worse. Im a mom Im suppossed to make everything better but I cant.
I had a friend write this to me:
Christ does not immediately calm the storm, but He is always willing to calm His child on the basis of his presence. 'Dont worry! Im right here! I know the winds are raging and the waves are high, but I am God over both.If I let them continue to swell, its because I want you to see me walk on water. This set of prints can be seen only in a storm. Im in this with you, and I love you more than youll ever know.' We'll probably never learn to enjoy our storms, but we can learn to enjoy Gods presence in the storm.
We have been through a huge storm....a hurricane this past year and a half.
Things will get harder from here on out I am Adams caregiver but I must find a night time job to helps ends meet and to take all the burden off my husband. Im exhausted now I can only imagine when I start working. Thank you evryone for your thouhgts and prayers we love you all!!

Thursday, April 26, 2012

God is Good...All The Time!

Wow it has been a very long time since I updated the blog!
I hope as all of you read this that yall are in good health and spirits! That no matter what is going on in your life you should always count your blessings and give thanks to our good Lord!
"Write your hurts in the sand and carve your blessings in stone"
April 27,2012 is a whole year that Adam has been diagnosed with this horrible disease Adrenoleukodystrophy. It has robbed my family of so many things and has robbed my son of so much. It has taken his ability to walk, talk, see and eat. It HAS NOT taken his love for life,his personality or his mind! Adam has proven some of the doctors this time last year they didnt know if Adam would even see his 10th birthday and they for sure told me that when he started losing his everyday functions he would also suffer from dementia. All I have to say is that this boy does not suffer from an ounce of dementia at all! As a matter of fact Adam has returned to school as of April 18th!! Praise God!!
God works in mysterious ways and we will never even begin to understand the great working of our Lord! A year ago today is when I was fed up and wanted answers and thats when I decided to take Adam to Texas Childrens Hospital. When I decided to take him I really didnt know what to expect but all I kept thinking was either they will think its serious enough that they will keep him and do an MRI or at least we would leave there with a referral to see a neurologist! Never did I expect what the outcome would be...I mean who would??
So today Adam and I went to visit our friend Christian and his mom at TCH and they are in the same exact room we were in exactly a year ago!
Is that a God thing or what??
I have been planning to go this day (for 2 weeks) to spend the day at the hospital with them as he was gonna have an out patient treatment but he fell ill and was admitted on Saturday!
Here is what I think:
God wanted me to see where we are a year from Adams diagnoses, yes A LOT has changed but I still have Adam and that alone is a blessing! My family has been through so much this past year. If I actually knew what I know today about where we would be in Adams diagnoses and how happy and blessed we are I would think I was completely INSANE!! Danielle and I went down for lunch and as we were eating we actually saw the nuerologist that diagnosed Adam. I was telling him "can you believe it has been a year since you told me the horrible news?" He then walked up to Adam said something in his ear and kissed his forehead. He said his goodbyes and well wishes and Danielle then told me that his eyes were teary and he was about to cry! Im pretty sure that was also Gods plan for us to be having lunch the same exact time Dr. Rivera was getting his lunch. Like I said GOD IS GOOD!!
I have a lot to be thankful for and many people to be thankful for!
First and for most God without him I wouldnt have the strength, faith and hope to face this head on like I have!
My husband who has been an absolute blessing not only to me but my children. He doesnt have to do all the things that he does but yet he chooses to. I dont know of to many men that would stick around in this situation but he has and Im forever grateful!
LeeAnn...a year ago she told me " I will walk this journey with you" and she has through the good times and the bad. She is a blessing to me and my family and so many others! I know that no matter what shes doing she will be there and Im so grateful for her and her family!
Many, many women from our church...... I tried to list them all, and every 5 minutes I think of someone else!  That is how many people have blessed our life!  So I am not going to try to list everyone, but please know, you have all blessed us so very much!
 Im grateful for all the woman at our church! (and the men too!!!)
Newport elementary will forever be my favorite school! They just rock!!
Well its late and I wanted to just write how God good is and how blessed today that I am today! Hope you all have a blessed night!