The rough days...

Tuesday 9/22-
I recently deleted all social media apps from my phone. I was trying to capture more time in my day and it has worked. I did not really miss it until today. When I had a rough day before I would go back and look at my FB posts and since I only posted the happy things it would cheer me up. Today I will try something different. I will try writing about the rough day and all the fears that came with it. For the most part it is never easy to get E to the car after school. A 5 minute walk turns into a 45 minute event. E leads us through the Armstrong garden, playground, takes a lap around the empty field and checks to see if Georgia, the lab, is out in her backyard. Then we finally walk a short distance to the car. Stopping along the way to put a leaf on Ms Jones car for her, touch the red brick fence, see if the "polar bear house" dog named Macy is in the window and finally arrive at our car.
Today that was not what happened. Today E was erratic after dismissal but went to the garden and then the playground. I knew something was wrong because he was almost panicked. We walked to the playground and he played and then he was ready to go. He started to go to the field then switched to go check on Georgia, but as we made our way to the car E fell apart. It was not a slow process. He literally fell to the ground and started kicking and screaming. I could not get him to tell me what was wrong. I saw the yard crew with a blower but it was pretty far away. At this point I felt like a giant spotlight was on me and E. I did not dare look up because then I would see just how many people were staring. There was a football practice on one field, a playground full of children and several on lookers that stopped their car. One person even came out of her house! That has happened before and it was not even the same person. I was sweating and whispering trying to get E to comply and go to the car. Earlier, right before this started we saw Ms Jones and Ms Kilgore. I thought we would make it to the car ok, so I told them we were fine. I was really wishing I had not said that. Maybe I jinxed us!
I had to leave E's backpack and get him secured in the car for his own safety. Once I did that I went to retrieve the back pack. E was still upset but we made it home in the garage safely. I told him he needed to go to his room to calm down. After E was in his room and I knew he was safe I lost it. I cried tears of sadness and fear. Sad I was unable to reach him and end the behavior before it escalated. Afraid of what might happen if I could not keep him safe or I was not here to keep him safe. It's so hard!!! Who would love him and take care of him? If I can't reach him how can I expect anyone else to? I know him best and I cannot reach him.
Some parents worry about highschool, college and planning a wedding. I worry about who will help E when I am gone. An even bigger fear I have is living through the death of another child. I think that is why I hyper focus on E's safety. Porters death is still so hard for me to bare. The thing that keeps me going is after losing Porter is that E needs me. Without E needing me I am not sure how I would keep going. There is such a deep hole in your heart when you lose a child. It never goes away. You just learn to live with it. I am not the same person I was before Porter died. Before Porters death, bad things only happened to people on the news or in a movie. They did not really happen in my life. I had lost grandparents and a few friends but none of those losses prepared me for the pain of losing a child.
Thursday 9/24-
I waited to post this entry so I could end on a happy note. Since Tuesday I have emailed with numerous teachers at E school and they all said E was having trouble complying with requests. This was so helpful because it gave me a basis for his behavior after school that day. Wednesday went better at school but his 30 min after school speech session at home did not go well. Today he was aloud to take as much time as he wanted to get to the car. It took over and hour but he was happy and we had a great night.

Loving Life because we have it

I am not sure why, but lately there have been several reminders of just how precious life really is and how quickly it can change. This time of year is always difficult as the anniversary of Porters death approaches. In addition to that, this year Nicole passed away. She had her stroke in 2004, so at that time we grieved for the loss of who she was and began to accept who she had become. Now we must accept the fact she is completely gone and grieve the loss of her passing. A reminder of we don't know when the last time we will see someone will occur. Our last chance to tell a person how we feel or to make a special memory with them. I am not the same person I was before Porter died. There is something life changing about seeing someone die and when it is your child it is very life profound change. I used to get vey upset about many things. I used to yell and react quickly to situations. Once something is said you cannot unsay it. Once something is done you cannot undo it. We must live with the choices we make, so I take time and make them more carefully now. I realize time and people you chose to spend it with are the most important choices you will ever make. I am not afraid to accept help as I need it often with E. I surround myself with people that love and care for us in a very real and genuine way. I put my family first as they are my reason for living. I know I am not perfect, but I try very hard to learn from my mistakes. Since the middle of January I have really been missing Porter. I know E is aware and he has been pointing to photos of him lately as he has seen me crying. E was sick last week for 3 days during which I was very concerned he would not get better. I know the pain of a child not getting better and so it is difficult not to go there mentally during times of stress. E did get better. His behavior has continued to be a problem since mid January. Behaviors that were gone have reappeared. He is running away again. I cannot figure out why, but it is very scary. He did this at school and they had to send home a form to let me know they had to "restrain" him as he almost made it to the street. I saw him as it was at dismissal and I am forever thankful they caught him because I could not. He is very fast. Many cars were around and he would not have been seen very easily as he was running out in between them. Life could have changed in that moment in a very bad way. It has become increasingly difficult to get E from our house to the car and from the car into school. Leaving school and getting to our car has also become a very scary process. E is fast and weighs around 45 pounds. This combination makes it difficult for me to "help" him to the car as I have in the past. Our "side shows" during car line have become quite frequent. There has been more than one day I have come into the house and put E in his room to calm down safely and gone to my room only to collapse into a crying mess to the point of vomiting. I have almost mastered the art of holding in my emotions when it comes to E. I no longer yell at get upset, but that comes at a price. A very real physical price in the form of headaches and upset stomach and other physical symptoms of what happen when you suppress emotions. Today was a surprising much needed good day with E. We went to the mall on this cold and wet day to meet Ms Erin to practice public behavior. I was expecting it to go very bad as the past few days had and then something wonderful happened. It went great. E was loud and people starred, some smiling and others trying to figure him out, but he was happy. He was so very excited to be there and see all his fav things. He did not run away. He ate his dinner in the food court and chose a cookie for a treat after. He said hello and good bye to all his favorite things and it was so wonderful. It was a sharp contrast to 2 days earlier when we were in a random front yard while E kicked and hit me and a passerby stopped to see if I needed help. Today was a good day. A great day. I am trying very hard to love life, just because we have it. Days like today make that very easy.

Power Stuggle

Post Written 1/20/15
I am fairly certain the latest round of behaviors from E are due to the fact he was outted on how independent he is at school on pottying. We have made little to no progress at home, yet I send him to school in regular underwear and he comes home dry. Since we go to the playground after school and he gets excited there, I ask the school to put on a pull up over the underwear until we get home. Until last Friday, when we got home he just has a pull up on and that was that. Last Friday I went to observe potty time and come to find out that stinker has been independently pottying for some time. They do tell him when to go and then he goes. I decided if he can do this at school, then it can happen at home. E seems to have other ideas. I have set an alarm for every 2 hours and I make him go to potty. He agrees to go, but he is letting me know this comes at a price. He has started to pour water all over the carpet upstairs again. Run from me when I pick him up at school and completely ignore me when I tell him it's time to leave the playground after school. Yes, this potty training is coming at a very big price. Countless other battles are reappearing that were long gone. Power struggle.

Life can be scary

Post written 10-14-14
When you are young, you never realize just how very scary life can be. If you are lucky, it's not something you find out until much later in life. I found out on 2/24/2006 just how scary mine can get. We had taken our first son Porter in for a routine heart cath procedure. We were assured there were no risks and he would be back at school Monday. It was a Friday and Porter would never be back at school or home ever again. When you hold your child for the first time there is such happiness. When you hold your child for the last time there is a deep sadness that never ever leaves.
I cannot change what happened, but I can never ever make the same mistake again. The mistake I made was listening to a healthcare professional over my gut. My mommy instinct. I knew there was something not right. I had rescheduled this procedure once already. I tried again, but our dr said he needed it. He had no symptoms that I could see. I listened to the doctors. We took Porter for the procedure. He died.
Now it's 2014 and Ebola is here. It's not only here but a parent at E's school thinks it fine to be in an apartment of quarantine people before it's been decontaminated with no protective clothing. That's not fine with me. I will not make the same mistake twice. My mommy instinct says wait 21 days. Guess where E has been since this started... Even before Mr Duncan died... At home.

E is sick

I know in my head, logically speaking, that kids get sick. Then they get better. In my heart, I know the pain of losing a child and it is very hard not to go to that scary dark place when E is really sick like he is right now. We had to switch to a new dr because our other dr moved out to Midloathian. This new dr is a wonderful person and I know her on a personal level as well. I took E to her and she thinks he likely has a virus. Our previous dr would have given us antibiotics anyway. I am trying to wait like our new dr said. Without blood work there is no real way to know and blood work for E would be far too traumatic. Plus the waiting for results. I have been very stressed the past 48 hours worrying about E. He hardly ate or drank Thursday. He did better today. I have been vigilant with the breathing treatments, and given ibuprofen as needed. After a dose, E perks up and seems to feel better. He is still very congested, but at the dr exam Thursday his ears and chest were clear. He did have fever. Sounds like I am doing everything right, but I feel awful. Once something bad happens to you, the kind of life changing real bad thing, like losing a child, you are forever changed. The possibility that your child might not recover is all too real. You over react at illnesses. You cry and stress constantly while your child is sick. You even revisit all the things that happened before with the child you lost, just so you can be sure not to make those mistakes again. Well maybe you don't do those things, but I do. I did not realize until tonight just how large a trigger E being sick was for me. I am doubting my caregiving skills. Worried he should have antibiotics, worried even if he has them, he won't get better. Just when I think, it's been years since Porter died. 8 years and 7 mths, surely I have learned to live with this loss by now. It's times like this I realize I have not learned to live with it. You never fully learn to live with a loss so life changing. You get along through the days. Maybe you have weeks or months where you don't cry, but it's always there. The hole left in your heart in your life, in your world. It does not matter whether E gets antibiotics or not. Until he is 100% better I will worry and be stressed. I think all parents feel the same way. Sometimes just writing my feelings in this blog make them easier to endure. I have tried everything else in the past 48 hours. Hopefully facing and writing my fears will give me some relief and E will feel better soon.

E's turning 9!

In a little over a week E will be 9. This is a blessing, but also makes me sad at the same time. E will now be 2 years older than his older brother Porter ever was. It's difficult to explain how there are certain times of the year, certain dates on the calendar that take me right back to the day Porter died. I find myself trapped in that day. Reliving every last moment, decision and very last minute I spent with Porter. I get stuck there for a while. I know it's not a place I want to stay in and I cannot stay there. E needs me now and will for a very long time. It's just so hard not to mourn the birthdays I missed celebrating with Porter as we celebrate them with E. I find myself worrying non stop about E's safety and well being. I even kept E home from school one day this week to take him to the dr just to be sure he was ok. His behavior had been rough at home and school so I thought something could be wrong. He was physically fine. I think our new pediatrician may think I am crazy because he has been fine the last few times I took him in.  I also tend to go way overboard on E's parties. It's just a small family and very few close friends party. I think I over plan because I  am celebrating E current birthday and Porters birthdays I missed at the same time. I did veto a magarita machine my hub wanted to rent, but I have a giant slide coming, a huge balloon number 9 coming, custom take home E cookies for party favors... A little much for just a little family bday party. I am hoping that now after I have blogged about this I will be able to move on from the sadness I feel and be able to celebrate my crazy, but sweet E's birthday tomorrow at his little party. I am hoping the empty feeling and hole in my heart I feel every day over my sweet Porter being gone will shrink back to the manageable size it usually is and not the gaping hole it feels like today.

Summer time blues

Its so hard to see E have some much trouble with the summer. Thank goodness for ESY summer school. That was such a big help. It has ended and we have a full month off. I have planned things for him to do everyday, but it is not the same as having a routine. It seems to cause him physical pain when the schedule changes. He has woken up almost every morning asking to go to school on his iPad. I tell him it is summer and school is on vacation. Then I tell him the 3 things planned for the day, but that is usually met with a scream. He craves order and routine. I have taken him to the dr the past 2 Mondays to be sure there was nothing physically wrong with him. There is not, ears are clear... I was looking for a reason, something I could fix to make things easier for him. I just feel like everything is so hard for him. He struggles with communication daily, so anything on top of that is just almost too much for both of us. E lashes out at me because I am the one with him all the time. He looks to me to fix things and create order for him. After enduring some of his "lash outs" I have to admit my physical and emotional state take a beating. It is hard to find the strength and the patience at times. Luckily, he looks at me with those big blue eyes and signs "sorry" and comes over to hug me. I know he has trouble expressing himself and his expressions are often very inappropriate when he is upset. I am sure all parents want to fix things that are hard for their children. I am no different in that way for any other parent. It would just be so much easier if my life was just all my facebook pictures. I feel like facebook is my happiest memories, the ones I want to look at when I am sad or frustrated. I felt guilty for a while posting all those happy pictures and having such a hard time with E, but now I realize why they are so important. If I go scroll through my facebook wall, I will be smiling in no time. I think I will go look at it now...