My son Trevor

[DeeDee Ortiz]

I have never shared anything about my son Trevor, but he is one reason I made the decision to join this wonderful group. My son is 23 yrs old and was born with spina bifida. Trevor has a twin brother Travis, who was born healthy. Trevor has had many medical problems over the years related to his SB. The last couple of years being the toughest. But he has always been a fighter, and done well considering all he has been through. We took him to the er last month for a UTI, which is not unsual for him. He is paralyzed from the waist down and has always used a wheelchair. Well then sent us home with the meds to treat the UTI. HE wasn't really getting better and had continued to have a headache, which isn't unsual when he has had a bad UTI. I called this local doctor, and he wanted him rechecked at the Er on MOnday. Trevor didn't want to go monday, so we went on Tuesday. As a precaution the er doctor wanted to do a CT Scan just to check his VP shunt. I was so sure it was fine, and a bit irraited that he insisted on doing this. Well after a while the er doctor asked me if they had ever told us he has mass in the back of his head with what they throught was blood. Well no they have never told us anything like that. Then he called a local Neuro, who always said he did not know what it was, and agreed they needed to call the specialist is Sacramento. Three hours later Trevor was on his way to Sac. We arrived there and they didn't get another CT done until wedneaday evening. Then followed with a MRI Thursday afternoon. About 5 pm his surgeron called me and gave me the most devasting news. He said my son has a malignent tumor. I was sitting next to his bed when I got the phone call. All my family was back home, 2 hours away. He said he woudl come to the hospital as soon as he could, but he knew I was sitting there all day waiting for some info. He said the tumor i s the type that young children get, and it grows very rapid. We dont' know how long he has had it, but probably a few months. He said he could operate, but felt he would probably lose hiim on the table, or from the chemo. After a lot of tears & pain, as a family we decided to bring him home. We just got home this evening. It is still alll a fog. I can't believe this is happening to my son. As a family we decided not to tell Trevor, and the younger kids, for now anyway. Only the grown kids are aware of it all. Trevor seems happy to be home in his own bed. Happy to be here with all the kids & grandkids. The surgeron says he is supprised Trevor is doing as well as he is at this point, due the stage of the tumor. I am so scared and my heart is breaking. I am confused and just dont even know what to do. I know I have to be strong for my kids & trevor, but the pain is so bad. SOmetimes I feel like I can't even breath. I knew my son would not live a long life, but I certainly didn't think it would come to an end like this. For 23 years we have drove him up & down the highway to Sacramento. I have hated every time he has had to be in the hsopital and all the many surgeries he has had. Today when they transport team drove him back to home, they left before we did. I almost couldn't leave his hospital room. HE started his life at that hospital just 23 years ago, and now he will end it there. Walking out today was so final & painful, it was almost more than I could bare.I am also concerned about my 13 yr old daughter Chelsea. We adopted Chelsea when she was 7 months old. She also has spina bifida. I am afraid when Trevor passes she will be afraid the same might happen to her someday. The surgery said all the SB kids he has treated, he has never seen this type of tumor in an SB kid.

You will probably be seeing me here a lot in the next few weeks. I will try not to ramble. But whe I got this news, this forum was the first thing I throught about. Even though my son is 23 years old, I knew many of you would understand what I am feeling right now.

God Bless You all.

[Kirk Kief]

DeeDee,
Ramnble for as long as you want. I'm so very sorry to hear this news. My prayers are with Trevor and the rest of your family. As we always say, I wish there was something I could say that would take all you worries away. Just know that you have our support, and our thoughts.

[linda]

Dee Dee,

I'm thinking of you and praying for you. I'm so sorry and sad for you. Vent, Ramble, Scream! Whatever you need. Your right if it wasn't for this forum I wouldn't be the same today as I was before Ethan went to Heaven. It keeps me grounded.

[Estrella]

DeeDee,
Please do ramble...this is what we are here for. We will be listening with open hearts. Your family is in my thoughts and prayers. I am so sorry that you are going through this. Thank you for sharing your story.

God Bless, Estrella

[DeeDee Ortiz]

Does the pain ever get better ?

[Estrella]

I am sorry you are feeling this pain. I personally do not know the feeling of knowing that my son would die...I can't even imagine what you are going through. All I can suggest is treasure and cherish each and every moment you have with your son. Take pictures, tell stories, make memories...do everything you can to make this time special. I am crying tears for you right know. I am praying for your strength and peace.

Take Care!

[jaiew]

i dont know if the pain ever gets better, i found out Carey was sick 4 months into my pregnancy and the pain was there every day. waiting for the moment was very hard for me, so what i started to do instead of dwelling every second on when or if i was going to loose him, i started to enjoy every minute i had with him like it would be the last. yes i still had my bad days that i yelled and screamed and cried, and after he was born i made every minute count. i refused to let him see me cry i always spoke to him like everything was going to be ok, and i was always smiling on those few occasions that his eyes were open. every time i left the nicu that is another story. remember your allowed to be angry and upset and your allowed to scream and cry. vent all you want thats why we are all here. it has only been three months since Carey received his wings so i cant really say about the pain. know that you are in my heart and my thoughts

[Kerry]

Thanks for writing and glad to hear your story. Praying for you and your family now for strength. I will keep in touch to see how you are doing. Write anytime someone will be listening to you.

Kerry
Mother of Olivia,Sarah, Lane and Heavenly Angel Mallory

[Estrella]

DeeDee, maybe you've already heard this, it is on the NILMDTS page...but I wanted to share...HUGS...

"When the Angels Call"
"I'll lend you, for a little while, a child of mine," He said. For you to love while he lives, and mourn when he is dead. It may be six or seven years, or twenty-two, or three, But will you, till I call him back, take care of him for me?

He'll bring his charms to gladden you, And shall his stay be brief, You'll have his lovely memories as solace for your grief. I cannot promise he will stay, as all from earth return, But there are lessons taught down there I want this child to learn.
I've looked the wide world over in my search for teachers true, And from the throngs that crowd life's lanes, I have selected you. Now will you give her all your love - Not think the labor vain, Nor hate me when I come to call to take her back again.
I fancied that I heard them say, "Dear Lord, thy will be done."For all the joy this child shall bring, the risk of grief we'll run.We'll shower her with tenderness And love her while we may, And for the happiness we've known,Forever grateful stay.
And should the angels call for her much sooner than we planned.We'll brave the bitter grief that comes, And try to understand.
Edgar A. Guest, 1881-1959

[Lindzy Foster]

DeeDee,

I am so sad to hear what you and your family are going thru right now....my thoughts are with you and your family, and praying that God allows as much time as possible for you and your family to spend more precious moments with Trevor...and praying you find some peace and strength to guide you thru....HUGS
Lindzy

[Rayna']

I'm sorry! :(

[marylouise]

Dee Dee, You're in my prayers and thoughts.
Hugs

[AngelJazzysMom]

DeeDee,

I am truly deeply sorry but please do make the most of this time as it will be one of the many times you remember with your son. As Jazlyn's first birthday quickly approaches I can honestly say the pain will never go away (as far as I know) but you always have your "good" days with your bad.

Please let me know if I can do anything for you and your family,
April

[Sarah O'Neal]

I hope this site is a helpful to you, as it has been to the rest of us...

Peace love and prayers...

Sarah

[DeeDee Ortiz]

I started a care page, and hoping to keep it updated as much as possible.

http://www.carepages.com/ServeCarePage?cpn=TrevorMarkOrtiz&extrefid=tlcinvite2

[DeeDee Ortiz]

Yesterday was a hard day for me. He did great though. He actually wanted to get up into his wheelchair and was up for about 2 hours. I think all the stress had just finally caught up. It is 1 week today that we got the news. I don't even remember most of the past days. I have tried to keep all normal and stay busy. Yesterday I ended up in bed most of the day, feeling very sick. Today I feel much better. Trevor doesn't seem to be having much pain at this point, which is a blessing.

[Lyssa Sauer]

Dee Dee reading your post brought tears to my eyes. I so glad you found us and joined our family but so sad to hear of your story. You have found a place where rambleing is OK venting is excepted and crying well no way around that. My prayers are with you in your journey ahead.

[DeeDee Ortiz]

I miss him so much. How will I ever go on without him ? He was such a important part of this family. I am trying to remember he is in a better place, but sometimes I wonder if he truely is in a better place. I just want to hold him, so touch his face, to kiss his sweet lips. How can I ever get over this ?

[Estrella]

DeeDee, its only been 4 months since my son Anthony passed away...but I can tell you that you wont ever "get over" losing Trevor...but you will find your way, and you will get through. You will find strengths and weaknesses that you never knew you had. I am so sorry that you are feeling this pain...Take care of yourself, give yourself time! How are the kids? and Trevor's best friend? You are all in my thoughts and prayers...~hugs~

[DeeDee Ortiz]

The kids seem to be doing okay overall. I don't know if they are doing okay because they don't want me to know. I am mainly worried about Travis right now. I know him going back home and to work today will be hard on him. I think being close to the family helped him. Joey, Trevors best friend has been buy almost everyday since he passed. I think he feels closer to Trevor when he is here.

[Lyssa Sauer]

DeeDee you dont ever get over it, it doesnt hurt as much but you wont ever get over Trevor. I have been thinking of you and praying that your angel son shows you he is in a better place. Even thought we know that it doesnt make things any better,but honey isnt in any pain he is heathly and able to do thing in heaven even we here couldnt do. Thinkin of you hon!

[DeeDee Ortiz]

I try to find comfort knowing he isn't in pain, and in a whole body now, but somedays I can't get past the fact that he is really gone. I miss him so much.

[Rayna']

(((hugs)))

[tinantravis]

"Does the pain every go away?" No, I don't think so...but the pain definitely changes. It's a long road of healing and somedays when I fell like there's no end in sight, I think of my beautiful angel.
Sending all my love, Tina

[DeeDee Ortiz]

I think of Trevor every minute of everyday. Last night I was working at my desk after everyone went to bed, and I thought I heard his tv on & him in there. It was the weridest feeling. I got up and headed to his door, and reached to open it, when reality hit. I broken down in tears, I just couldn't stop crying. Every second of everyday I am thinking about him and missing him. Travis, Trevor's twin brother is having a terrible time, and I just don't know what to do to help him. He keeps telling everyone none of us understand how it is to lose your twin, which we really don't. But I know how it feels to lose my son, and it is the worse kind of pain I have had in my entire life. This last week I have been the target of Travis' pain, and it really hurts.

[JenniferBrown]

DeeDee,

No the pain doesn't go away but it does get easier to handle. I lost 3 babies and thought that was the worst thing to lose but I was wrong. I lost my aunt who was like a mother to me and I swear I had a really bad time of it for almost 18 months. I'm pleased to tell you that 3 years later I DO think of her daily and love and miss her terribly but don't have the nightmares and don't breakdown like I did the first year and a half.
Grief doesn't have a timeframe. You just have to go through it. The first year is the worst! We are hear for you. HUGS!!!

[DeeDee Ortiz]

Today has been a terrible day for me. I am missing Trevor so much. I honestly don't want to deal with holidays this year.

[Andrea A]

I don't have much to offer, only to let you know how very sorry I am about what it happening with your son! Easier said than done I know, but try your best to stay strong! I'll be praying for you.