What Made You Read This?

Over 2 and a half years, I have poured my heart and soul out into a computer where anyone can then access it on the Net. I thought it felt good to get it out. Maybe I opened up too much. Maybe I should have never shown such raw emotions. If my family and close friends can’t handle it, what makes me think complete strangers would? In the beginning… I thought I would have hope to offer. I thought people would drop to their knees in the sight of a miracle. That was my goal.

Now? My goal is to get through the day. I am not the positive upbeat BELIEVE person anymore. And someone close to me pointed out that I get too much praise for being so strong, brave, positive. I am weak guys. I don’t wake up in the morning and Satan goes and hides because the Jesus Warrior is up. No, I grumble that I have to face another day of this CRAZINESS. I have no advise to give. Anything we have tried with Santana has failed. Money.. out the door. Glimmer of hope? Hope? What is that?

My readers… I am sure a lot of them left. I don’t hear from as many as I used to? I don’t have those… hang in there, God will come through letters like I did the first 6 months. People got tired of waiting. Got tired of the bad news. Maybe my positive energy faded when my positive supporters did. We don’t hear from as many people because Santana is stuck lifeless while their kids continue to improve. It is like they feel bad or something.

No one understands why God chose not to save Santana and give him improvements. I don’t understand why he is on so many organ damaging drugs. His own neurologist said today that he would expect a 21 year old go through all the meds Santana has.. not a 4 year old. I can’t explain why God has chosen us. We have been told multiple times it is because YOU (me) can handle it and maybe other can’t and they need the improvements to go on. But I am not sure I agree with it. If I was handling it I wouldn’t be going through so much stress and anxiety myself.

I was thinking of why I feel like something doesn’t match. And I think it is because I last saw Santana a typical boy and then had a few days to see him again as a child with things stuck in every hole in his body. Lifeless. Purple. The beeps still ring in my head. There is a gap. I didn’t get to see the paramedics, the CPR, the coding, the doctors all over. I can’t fathom that moment. I didn’t get to see him in the pool or by the pool. It always bothered me that I had no idea what outfit they had to cut off his body. I want to know what he was wearing. There is a moment of time that is missing for me to grasp what happened to him. There is a void. There are questions. Like… why was he admitted to ER at 10:50 and we didn’t get a call for about an hour later?

Which reminds me. I know I had a connection to the moment he went in. I am not sure I ever wrote this before. But, James met up with my friend and I (I was spending the night) and brought me clothes. I was going to get dressed in the bathroom and he brought me something a bit too tight and I felt icky and was crying in there because I was too “fat” That would have been the time Santana fell into the pool. Because we left about 11 to go have brunch. I cried because something in my body didn’t feel right. I knew it but didn’t know it.

I will never forget standing over his bed hearing a message Pastor Matthew Barnett taught about going around the Dream Center telling the disciples to Believe.  He said it over and over again in that sermon.  It rang in my head.  I felt there was reason to believe.  But it isn’t the healing.  I am not sure what it is but God kept him hear for something.  Maybe I am not ready to lose him.  Maybe he knows I would go overboard.  Even when I begged God to take him and he had the chance 3 times… but he is still fighting.  Maybe God sees me as losing my mind with out my cuddle bug.

I miss him.  I miss him everyday.  I miss living a typical life.  I miss friends.  Shoot… I miss family.  You would be surprised at how many family members I do NOT hear from.  Yeah… kind of a shocker to me too.  It hurts.  But I know at the end of the day I have the almighty to hold me in my pain.  To bandage the wounds that ignorance had poured salt water on.  

Every breath from Santana is a a miracle.  Especially now.  His spine is getting so bad that his one lung has shrunk and his heart has moved over.  He is like a fish out of water sometimes.  You see his whole chest moving in and out.  We have the decision of some MAJOR surgeries.  Rod in back, and Hip surgery that is gruesome to describe.  But is it worth it.  for 2 and a half years of his 4 years on earth, he has been nothing but an experiment.  Let’s see if this drug works… lets try this therapy, do this do that.  What is it worth? Who are we trying to impress?  Because at the end of the day… all we got is each other (the family).  

So I want to ask you this… Why do you read this site?  Why are you coming here?  Does it do any good to sit in the shadows to see what misery I went through and not say a word?  Or to read my celebrations and still not see a word?  I really want to know why you took the time to come to this site and read it right now?  If you don’t feel comfortable leaving a comment, email me.  prayforsantana (at ) gmail . com.  I wrote it funky so those bots don’t come in and send me junk mail.   I dare you to tell me why you feel like you need to read this.  Then.  I want you to go to every link I have to the right and give everyone of those parents some positive feedback.  I check those blogs and keep up with them and they need prayer and encouragement as much as I do. Those are some AMAZING kids that give me hope for Santana.  Please say a prayer for every single one of them.  If you think your comment would not be good enough. Think again.  I am tired of hearing from a friend of a friend that so and so doesn’t write you because they are scared and don’t know what to say.  WE ARE STILL JAMES AND LINDSEY BLACK.  There IS NOTHING you HAVE to say.  There is no such thing as sounding repetitive.  

And to those who take the time to lift up the hurting.  THANK YOU.  Every word said is cherished.  Thank you for believing in my boy!

Water Safety Awareness!

Today was the big kick off at Phoenix Children’s hospital for Water Watchers and Water Safety Awareness month.  I could only stop by for a short time because we had a doctor appointment at St. Josephs to get to.  Needless to say, that half hour hit home to me.  The mother of Westin, who drowned 11 years ago, put this all together and fights strongly for water safety.  Listening to her was a wake up call for me.  I am only 2 and a half years down the road and I have a long road of heart ache and pain ahead of me.  Till this day she grieve the loss of her son, as any mother would.  And even though I have Santana with me.  I don’t.  I really don’t have the boy I used to have.  I love the “new” Santana just as much.  But I miss his big grin.  Just like she will never hear her son say I love you, neither will I.  Instead, I get a blank stare.  The brain damage will change his appearance.  While I get to see him “Grow up”  I can only imagine how much MORE handsome he would have been.  Just to feel him wrap his arms around me and kiss me on the cheek would be good enough.  There is no going for ice cream, instead we just hook him up to his tube feeds.  He doesn’t get to savor food the way we do.  He doesn’t get to say, “mommy my tummy hurts, will you rock me.”  He has no say in anything.  NOTHING. But I know he loves me.  I just wish I knew if he really wanted to be here.  Instead of gummy bears and juice, we are shoving a multi number of narcotics.  As if the brain damage is not enough.  What could these narcotics do?  I look at Tyree and think… NO WAY would I even think of letting him have a med like this.  How is Santana any different?  Why is ok to give him such high doses of drugs that all say MAY CAUSE DIZZINESS OR DROWSINESS on the bottle?  There is so much to think about after today.  But my feeling were validated.  I know it is ok to still hurt and want my baby back.  

There was a few cool things today. (Do people still say cool?)  First, Westins family attends the same church and service we do!!!  What a small world and wonderful connection.  Also, Fox 10 pulled us aside for an interview.  Should have done myself up a bit more… when you watch the video below… YES I KNOW… I need a manicure!  Ha ha… whatever.. it was ALL about Santana and WATCHING KIDS AROUND WATER!!!!  Enjoy the video and say a prayer for every parent that experiences it.  Already since January, there has been 97 water incidents and 15 of them were drownings.  They had 15 pair of shoes to represent those kids who lost their lives.  It was sad.  I will post that picture tomorrow.  My phone is charging.  Below is also the letter I wrote for the display. It was late so it may not make much sense…

Hold your child tonight and thank God for every breath in and out they take!  That alone is a miracle!

When you hear, “It’s a boy!” you study your child and wonder what sport he is going to play. Santana… he was our husky little football player all the way! Every parent has a dream for their child. But ours was Shattered in the depths of our souls when we got a phone call on December 16th, 2006. When we dropped Santana off with his grandparents on the 14th, we had no idea that would be the last time he would laugh, let alone smile. We had no idea we would not hear his feet running around getting into things. We will never get to yell, “NO… Don’t do that! Get out of that… BECAUSE I SAID SO.” The refreshing desire of a pool took his life. It took our life as a family. Don’t get me wrong. He still has a beating heart after it had stopped for 30 minutes. His organs still work after not having oxygen for 45 minutes. But The Santana we knew and brought so much joy to us as parents and his older brother was gone in a moment. He doesn’t get to savor the moment of his Favorite McDonald Chicken Nuggets. Instead he is kept alive by the nourishment of canned tube feedings that he can not taste. Santana lost the ability to swallow and has not gained it back as of yet. It is very sad to have a big family Holiday dinner and gathered around the table and see Santana in his wheel chair looking hopeless. We can’t go camping because of his fragile needs. It is hard to get together as a family because the wheel chair takes up too much room. We have tried going out but have been told there isn’t a table that will fit his chair. It is tough to do things as a family, we take one of Santana’s 2 brothers to run errands while the other his home. We haven’t grocery shopped… or any kind of Shopped… together for over 2 and a half years now. We managed to go to Disneyland together and it was AMAZING to see Santana on rides. But it just wasn’t the same. Jett had to hear… we can’t do that because of your brother. Or We gotta stop to feed your brother. Not to mention, most kids laugh and smile on rides, where Santana has blank expression. ALTHOUGH, you can see it in his eyes. Without a doubt, He is trapped in his body. When we see that in his eyes, it makes us strive and work harder towards his therapies and well being. People ask us all the time, “Why do you try so hard? Why can’t you let him be who he is now.” You know why? If we didn’t, we would not be giving him his best care and we would not have something to look forward to. While we will not have the Santana James Black we had before December 16, 2006, we can give him the best quality of life and try whatever we can because we will always wonder if we didn’t try. There are days we wonder why we didn’t take him off the vent. It is not fair to keep him here. It is a lot of exhausting work and it takes a toll on the marriage. But the fact is, we did keep him here. With that, I hope he can be used to show people the importance of drowning prevention because either way you will grieve that you lost your child physically, or you grieve with an EVERYDAY reminder when you lose your childs personality and you are left with a shell that doesn’t show a response of thank you or I love you’s. It is an emotional roller coaster ride where somedays you feel like the seatbelt broke and you are going to hit rock bottom. The road to recovery is long, dark and lonely. There are no signs to tell you which way to go. There is no one to stop and ask for directions. So instead, we cling on to our faith and the word of God.

All Good Things Come To An End

As I mentioned… so much NEW going on.  Well, New is not always great.  New can mean starting all over with nursing.  As we know that is a CONSTANT battle that will never stop.  This time it isn’t my part time nurse but Santana’s nurse of 2 years and 7 months!  With school starting, it changes hours and it just doesn’t work for her anymore now that she has the baby to take care of.  I am VERY sad to see her get replaced.  There is NO ONE that can be another Amber.  Don’t get me wrong, I have had WONDERFUL nurses with GREAT nursing skills.  But Amber plays with Santana and talks to him as if she was babysitting the typical 4 year old.  She is the only nurse I have ever had that takes the initiative to put him in the stander, straddle him on the bolster, stretch him out, play play doh with him, read books, watch cartoons….etc.  She would text to see how he was on our many adventures out of town and truly cared about him.  Santana loves her too!  When she was coming back from maternity leave I said, “Amber is coming back next week” and his eyes got really big and he made an oooooo face.  At the same time when he sees her in the morning he rolls his eyes cause he knows she is gonna work him.  We are very sad to see her go.  I thought we would have her forever. =(   Nothing lasts forever…  We will miss you Amber!

I got to give props to our new nurse for today.  She is really fitting in great and getting the hang of things with all these crazy med schedule and therapies.  She was kind enough to come in at 5:30AM to help me get Santana ready for school knowing I had to get Jett ready and off to his bus stop. Well we were waiting by the window and the bus made a u turn in our cul-de-sac and left with no pause.  I called transportation over and over again getting busy signals and finally got thru to an answering machine. I was SO grateful his nurse was there.  I had to get Jett to his bus stop over by the other house!!!  So she helped me load up Santana and we all went to drop Jett off first then we would take Santana.  We got a call that they would send the bus back… but it was too late for us.  =(  Jett got off nice and he was SO excited to ride the bus!  41 kids get on at his stop according to the schedule.  Holy Farm Kids!  

Santana got to school and we put him in the tumble form on the floor in circle time and he seemed to enjoy the sounds of other kids.  He made it home nice and safe with a report that he was responsive to his name.  That is good.  I am anxious to see how he does.  I am just bummed I did not get a first day of school pic for him.  =(  Thanks for the prayers… Even though it was a BAD day… it just didn’t stop all day… I know my boys were safe from your prayers.  Jett LOVES his new school and all the neighborhood kids.  His teacher called and said his transition is great.  I thought that was nice to let me know considering I was in a panic for him.  He is way more brave than I ever was at that age… or even now! I don’t like new situation and I am chicken to talk to new people.  He has so much personality.

Oh yeah… then I get an email that not all the doctor stuff went through so he should not have been at school today.  =/  I won’t go there… I already went there on facebook… I am done for now.  

Santana is finishing up his breathing treatment so I better go crawl in bed.  I gotta do my middle of the night med that is totally draining me!  Not to mention I have been going NON stop since 5:30 am.  I don’t do mornings.  At all.  Plus I have to load up Santana and Tyree alone the next few days so that I can pick up Jett.  That was the main problem for Amber… She won’t be able to stay long enough for me to get Jett.  It stinks loading up Santana in this heat but I gotta do what I gotta do.  If I lived in my house, I am sure this would not have been a problem since he can walk home from the bus stop.  But, September is too long of a wait.  

We go to new pulmonologist tomorrow!  Pray for wisdom in wanting to help all his junk!  Also, tomorrow is the kick of to Water Watchers at Phoenix Children’s.  I want to stop by with Santana.  It starts at 10 am.  Santana is the only living drowning victim featured, last I knew.  Wear a purple ribbon this month so it can be a reminder to watch your child around water and to pass the word!

Ring the Bell!

Tomorrow is the start of a new school year.  It is really the start of a lot of new.  Jett will be starting his second grade in a new school.  Santana will be going back to school with out his home nurse… a new nurse. Santana will be picked up just in time for me to run Jett to his bus stop which is where we are building our house.  I would have more time to take him to the school but it is further so it works out the same… unless we are running late.  So this will be a new experience for him.  He has never had to ride a bus before.  I am so thankful for one of Santana’s nurses doing a trial run and coming at 5:30 am to get Santana Ready!!!  She will work 2 hours and then come back at 11:30 when he gets dropped off to work the rest of the day.  It may not be worth her while for 2 hours to come in but at least she is willing to come the first week when it is the craziest while getting used to schedules.  Speaking of schedules.  I am really bummed to find out our long time WONDERFUL nurse can’t work past a certain time which really cuts her hours since he gets home from school so late.  Not to mention, she can’t stay late enough for me to drive to get Jett after school.  This week I will just have to load Santana up and take him and pray he doesn’t choke on the way.  I am bummed about that cause now she may have to leave our case, so I am told.  It wouldn’t help to move to the PM class either because the hours wouldn’t be long enough for her in the morning either.  Total bummer their. 

So with all these new changes, some good, some bad.  I am TOTALLY freaked out.  I think I have more anxiety than Jett.  He has NO fear of a new school.  He is so excited. Come to find out, one of the NEW neighbors we hang out with had a friend over who Jett hung out with for a bit while I was talking to a contractor, happens to be in his class!  She doesn’t live around there but is good friends with the neighbors across the street.  We are just so thrilled to move in there.  What a great neighborhood it will be!  

Pray for Jett and Santana’s first day of school!!!!  Extra prayers for Santana please!

Thank You!

What a CRAZY month it has been.  And the boys go back to school already on Monday!  I can’t believe how fast this summer is going by.  I hope August and September goes by just as fast.  For those who live in Arizona really understand that!  I already jumped in the car to go to the property at a whopping 120 degrees.  Urg.  It is tough to go anywhere because Santana doesn’t control his temperature too well.

As you all know from the Twitter updates to the right, we were at St. Joes ICU.  He was having seizures that were not visible.  HIs EEG was spiking every second which is why he was extra lethargic.  It was a VERY long 2 weeks.  Some of you were probably wondering why I was in such a hurry to get out of there.  I had plane tickets on the 9th to go to Iowa for my Grandmas 75th surprise Birthday Party.  Santana got released the day before I had to leave.  I was running all over to pharmacy’s trying to get everything filled before I left.  James stayed home with him as a last minute decision since he just got out of the hospital.  With the help of him and the nurse, they survived.  Before I go into details I have some thank-you’s to the ones who pulled together to help with the boys while I was in the hospital and to help with Santana while I was gone.

A BIG thank you to Santana’s sunday school teacher Ellen.  Not only did she watch the boys a few times, but the first time Jett brought the puppy.  I could not believe they did that.  Also, Ellen came and helped between nurses and James getting home.  

THANKS ELLEN!  You are the one I feel MOST comfortable with Santana from your own experiences.  

Thanks to my girl Lori and her daughter Libby for the ICU visit!  Nothing like a good gag gift and CANDY while in ICU.  They fit nice.. BAHAHAHAHA… Sorry… won’t explain that one.

Thank you to Jetts former Baseball coach, Nicole who took Jett for an afternoon.  Jett had fun and we really appreciated that!

Thank you Chandra for taking the boys a couple of days.  They had a blast with your girls!  

Thank you to James sister Janet who came and helped while we were in Iowa.  She saved the day so James could work on a Saturday.

Thanks to my other sister-in-law Winnie and my niece Brittney for helping out and taking Jett to VBS. 

Thank you Bonnie , TJ and the rest Rueb family for several things!  Thanks for taking Tyree.  Sounds like he had fun with the girls!  Thanks for the WONDERFUL home cooked meals.  That was the best thing EVER!  Thanks for Lunch in ICU TJ.  The cafeteria taste the same after a while.  And Thank you Bonnie for coming and playing a few rounds of Sequence with me on the day I was ready to bottom out.  I was truly DONE being there.

Thank you to Kortne (my realtor) and Eric for the YUMMY Cheesecake Factory Pasta.  It was Delish!

Thank you Kaylynn for coming back an evening to work with Santana.  You are much appreciated for doing that!!!!!!

Thanks Katrine and Weiss for bringing me a purple monster to help me get through the day.  And for arranging my nurses for when I was gone.  You Rock.

Thank you Dad for coming and letting me go home a night.  I appreciate that.  Hope your back doesn’t hurt too bad from that “couch”

So we still have about 5 seizures a day… better than the 20-30 we were having.  He looks pretty alert considering all the medication he is on… 11 all but a few are new.  We got this machine called the vest. We put it around him and hook a hose up to the machine and it shakes him up and gets all the crud out of him.  They said if you are using it constantly like you are supposed to you should see a difference in congestion in about a month.  Yay.  He seems to like it though.

We have neurology on the 30th so we will see if some things can be changed.  Right now we having something going on every 2-3 hours then the last one finishes up about 9:30 with his LONG breathing treatments then we are up at midnight doing a med and the next one then again at 6.  We are lacking sleep around here. I gave up on the homemade food.  It is just too much right now and he was loosing weight even with Gainer added to it.  

Iowa was fun.  Tyree was NO fun traveling.  To his defense, We left at 6 am on the 9th and the 3 of us (Jett too) drove to LA got out to load my mom and step-pop and took off to the airport for another 3 hours of sitting.  Putting him as a lap sitter was the mistake.  When he is tired, he wants his own space.  We survived… not without dirty looks and crackers being chucked in the air.  He was a bit of a stink in Iowa.  Just BUSY.  Nap schedule non existent.  Then on the flight home in the first 30 minutes, he dumped a big  baggie of cheerios and Dr. Pepper in my lap.  FUN.  But it was so good to see family and cousins!  

We ended our “vacation” by spending Friday on the beach before driving home.  It was a WONDERFUL day to do so… so I though.  BUT… Tyree and I got burnt. Tyrees face was swollen and now scaby.  We went to the doctor to get some cream.  poor baby!  But they all had a blast!

 Not sure what else to write right now.  So if you have any questions send them my way and I will blog about it!  Thanks for the ICU prayers!  We felt them and we got out of there!  Like his Pediatrician says, “He is like a cat with 9 lives!” He keeps fighting through stuff.