WHERE R U???

You ever felt like your life was slowly falling apart...?

Where is my support system when I need them? Guess I'm feeling sorry for myself. I have been trying not to post so much, sometimes I know it bothers others. Can't figure out where all my friends are when I'm going through such a rough time in my life. Losing a child day by day has been so devastating and heartbreaking. I am so disappointed, I thought during this sad time in my life I would have many friends holding the umbrella to protect me from the storm. I do want to say there have been a few friends to keep check with me and to those wonderful friends thanks so much for being there for me.

The funeral home visits, getting phone calls at all times from my daughter

who doesn’t want to die because she is scared. Listening to her talk about wanting to go get her hair cut before she dies. She told me to take her picture so I will have a photo of how she styles it for the viewing. She talked about what she wants to wear at her viewing. Yes, it's nice I get to know ahead of time what her wishes but it doesn’t stop me from crying and feeling overwhelmed with this journey. You feel like you have friends, but the ones you thought were your friends haven’t even ask how things are going. I expected some emails or phone calls from my friends to give me some strength and their friendship. Hang out and really be a friend.

Here is the thing about grief I have figured out. I think of

it as something that happens after  a death, but mine has arrived before my daughter dies.  As soon as I knew in July she had 6 months to live, I started the grieving process.

I feel sadness, anger, isolation, forgetfulness.  I am exhausted from all the things that need to be taken care. I am Mom!!! Jammie needs me and wants me to be near her. When she gets scared from not being able to breathe or her temperature spikes or her anxiety is so bad that I’m the only one that can calm her. I have to travel to get to nursing home and 270 is never not busy.   Mom’s are special people in a child's life, we can make everything better no matter the age of our child. I know death is close for her as she is losing her ability to walk and oxygen levels have increased, loss of control of her bladder and loss of appetite.  This grief is not just about accepting Jammie’s future death, but of the many losses already occurring as I watch her illness progress. Since I know her death is imminent I am in a state of hyper-alertness. I panic whenever the phone rings. I stay up and cannot sleep, I feel like a zombie most of the time. I go and sit with my daughter or take her to get things done that are important to her. Jammie keeps saying she is ready and doesn’t want to suffer or make this a long drawn out process, that’s why she has signed the DNR. I know God is watching over her and will take her when its time. I am suffering emotionally and physically watching my child die slowly. I honestly have never felt more alone in my life than I do right now. I pray for anyone who has lost a child and the grief they have gone through.

Foggy Morning Blues :-(

Well, today I'm taking the trip to Gahanna Nursing Home by myself. As I listen to the news they are talking about Columbus having the heaviest fog and to be very careful with your driving.  Gotta go and see my  baby girl, she needs me.  I at Starbucks before getting to Jammie's.  I picked Jammie up her favorite drink, which is Carmel Macchiato with light ice & extra shot. Jammie was happy to see her favorite drink when I walked in.  I looked at her and that smile was gone and she just looked so sick.   She was resting  in her recliner and looked sleepy.  I had brought my camera along today and decided to go outside and take some pictures at the nursing home.n I just Needed some time to relax and being outside helps me feel refreshed.

 Took several pictures of the items around me with the raindrops still on them.  Wanted to capture some nature pictures of rain drops and hopefully how heavy the fog actually is.  I'm relaxing and thinking about being on a hunt for finding picture worthy shots.

Love the rays of sunshine bursting through the fog.

Foggy morning blues............

Raindrops hanging on to the pine needles.  It seems like tear drops are always hanging on to my eyes, ready to release at any moment. :-(

I enjoy the oak leaves that are still hanging on the tree.  It's like the beautiful feeling that fall is here.  In this case, this bare tree with a few leaves still hanging on are the signs of Ole Man Winter is coming.

Foggy, foggy, foggy

Check out the weeds with the raindrops still hanging on to life........just like my daughter is.

 As I am taking my last photo, I see jammie who's looking for me.  We walked back in together.  When we sat in her room; she started talking about things she wants to do today.  She wanted her hair cut and styled for her funeral.  What?  Really?  Yes Mom, I don't want you to have to worry about how to describe how I wear my hair.  You can take a picture and give it to the lady who does my hair when I die.  This is so hard for me to listen to this, and know how right she really is.

OMG, I'm so, so, so hurting inside.  Jammie got ready and I got on the net and made a reservation, so we would not have a bunch of waiting when we got to Great Clips.  I told the lady named Rianna, what Jammie was wanting and Jammie  also talked about her illness.  Rianna listened and I saw tears dropping from her eyes.  It got to the point where Rianna had to stop and wipe her eyes, so she could see what she was doing.  She gave Jammie some extra time shampooing her hair, which Jammie told her how much she liked that.

I prayed when the girl started cutting Jammie's hair I prayed for God to guide her hands while she is cutting Jammie's hair.  I wanted Jammie to be pleased with her results.  Well, Rianna started cutting Jammie's hair and kept great concentration on what she was doing.  She told Jammie she wanted her to be happy with her hair.  Well, Rianna, you did a wonderful job and I love Jammie's hair.   I also cried during the timing that Jammie was at Great Clips.  Just watching the care and kindness Rianna was giving to Jammie, touched my heart.  

Next stop Meijer, Jammie wants a ring that has her birthstone in it.  She had already looked at the ring and had decided she wanted it.

 She told me she wanted the ring I got her in Myrtle Beach to be cremated with her.  Also, she wanted the birthstone ring on.  Jammie got the ring for a great price.  She came out of the store smiling.  I'm still in shock of her wanting to do all these things in preparation of her death.

Tired and hungry, so we stopped and had lunch at Olive Garden with  allot of Veterans since today is Veteran's Day

First Hospice Call

On 11/6/15 we were called by Hospice to come now to the nursing home,  they think it is time.  I hung up and started screaming,  I called Maggie and Jennifer who are my sisters to come be with me.  On the way to hospital, I called my friend Dana and told her what was going on.  It's nice to have a good friend whom you can depend on for comfort.  My family showed up which made me feel better. Marlon and I arrived at nursing home around 8:15 am.   Jammie  kept telling me that she couldn't breath and she was scared.   All of us sat with her and tried our best to comfort her.  Around noon, my family left as Jammie was stabilized and feeling better.  

11/07/15~11/09/15  

Spent most of these dates just being with jammie.  

11/10/15

Drive to Urbana and pick up Mom.  Mom let me know she was unhappy that no one picked her up Friday concerning Jammie.  I told her to pack her bag and she could come home with me and spend a few days.  We could then ride together to go and see Jammie.  Well, that evening Jammie called and was scared.  She told me that she wanted us to come she was short of breath and was scared. She told me that Hospice promised that she would not feel pain and she does.  She wanted me to call hospital because no one was helping her.  I instead called hospice and told them the situation.   We headed to the car and called my brother Bobby and sister Maggie and they wanted to come. When we got to nursing home,  I went over to Jammie so we could talk.  Jammie told me she felt hot and when I touched her she felt very warm.  I went and got the nurse and told him that Jammie was hot and I wanted her temperature checked.  He came in and by that time my brother and sister were there.  Seth the nurse checked her temp and told us that her temp was 103.  

At that point, I was pretty upset because I should not have walked in and have to ask for them to check her temp.  She had told him several times to call Hospice because she was feeling bad.  He did not do as requested but just the opposite.  When Hospice called him he told them she was fine.  I had already called them twice telling Hospice that I wanted them out there to be with Jammie and to give her some comfort.  Jammie really needed something for fever and meds to keep her from being so scared.  My Mom and brother and sister prayed for Jammie. She is feeling better and is relaxing.  

It's 10:30 pm and we decide to go home.  The nurse said he would call if anything changed.  I am still upset that Hospice did not show up tonight.  Come to find out that the nurse was saying all was ok so they did not send anybody.  After our talk from now on if Jammie or myself calls someone will come immediately.

Homeward Bound~Last Morning at the Beach

 Up early this morning to prepare for our trip back to Ohio.

Beautiful view from room 1906 of the sunrise this morning.

Jammie got up to sit and watch the sunrise with me.  She told me to please help her get to the ocean with no oxygen or wheelchair.  I told her, of course, I would.  We went to the elevator to take the ride down to the first floor.  The view was breathtaking this morning as we ventured our way down to the ocean.

DOWN ON THE BOARDWALK.......

 We had been talking about taking a little bit of sand with us to make some crafts for a few people.  It's funny,  but we looked in the trash can and Jammie stuck half her body inside the can to reach the cup we wanted.  I got it rinsed out and collected us some sand.  Now we can finish our walk to the ocean.

I can't say enough to all of you for making this happen for her.  It was her last wish before we leave to get her feet wet and get to the ocean without any chair or oxygen.  God thank you for the joy she is getting.

Jammie is crying as she gets to the ocean.  She said Mom I would never have got to come if it weren't for Dream Foundation.  I would love to stay here till it's time to go.  I cried instantly at the statement.  She hugged me so tight and just wrapped her arms around me and together we just cried and watched the waves come crashing into the shore.  This memory will be forever in my heart.  Thank you, Marlon, for getting these pictures.  We didn't even know you were back there.



THANK YOU DREAM FOUNDATION..........

Jammie needs her oxygen now so we are going to get it.  She stopped and waved bye to the beautiful ocean and sandy beach with tears still flowing.

 Goodbye, Myrtle Beach and all the wonderful people we met while here.  We have enjoyed this trip so much.

Bought this ring for Jammie.  She was admiring the ring Bon Jon,  so I told her to get it. She can think of our time together every time she looks at it.

Time for breakfast and those delicious omelets.  Our waitress told us we could have anything on the menu and they would make for us.  Can you feel the love these people are giving us?

In the van and headed back to Ohio.  The leaves have lost most of their color in just the 3 days that have gone by.  Glad we were here at perfect timing to see Gods beauty

As we were traveling, I got a picture of this barn in the hills of Virgina.  We were going about 70 mph and I can't believe the picture came out this good.  Check it out. 

Rainy Days Will Never Get Us Down

Finally. we may get to see the sun this morning before it rains.  We are all sitting on the balcony watching the sun rise and cheering.  :-)

 The sun shone for a few minutes before the clouds came and the rain started........oh well its time for breakfast.

Enjoyed the morning in the hotel and by noon the rain had stopped and we were on the beach looking for seashells.  We sure have gotten allot of use from the beach buggy.  

Met a nice couple who was walking the beach looking for sharks teeth.  Her name was Annie and her husbands were Troy.  Annie decided to give Jammie some shark teeth she had found on the beach.  The teeth were from a Tiger shark and a Bull shark.  Annie told Jammie she has lots of shells and sharks teeth and she would bring her back some and leave them at the front desk for her.  She was sure giving Jammie some Southern Hospitality.  
  It's raining again and we are in a hurry to reach the hotel........its funny we are almost running to get out of the rain.  Marlon is pushing Jammie pretty fast in her beach buggy chair and I'm laughing as we running in the rain.  In the hotel now and getting showered and cleaned up.  There is a knock on the door and there is the bell hop telling us that a lady dropped off this bag of shells for Jammie from Ohio.  Such a sweet, thoughtful thing to do.  Jammie opened the bag and there were nice big shells and large sharks tooth taped to a handwritten card from Annie and Troy.  Jammie picked up all the shells to see if she could hear the ocean in them......she smiled as she listened to each shell roaring like the ocean.

Jammie had asked me to download her some pictures and send them to Walmart to be developed.  Well, I finally got that done and Marlon said he would take us to pick them up.  I must have put the address in the GPS wrong because we ended up at a KFC.  Put the address in again and now we are 31 miles from the Walmart with the pictures.  Geesh, I'm glad it's still early and so we are headed in the opposite direction to get the pictures. Along the way, I saw a partial rainbow and tried to get a few shots of it.  I also saw a double anvil in the sky and the little bit of sun that we could see was reflecting off the clouds making the anvils really show up to admire.  

FULL MOON TONIGHT AND I JUST COULD NOT GET A GOOD CLEAR PICTURE OF IT.  The full moon was quickly covered up with black clouds and lightening was striking out of the ocean.  The full moon was beautiful tonight for the small amount of time we got to admire it.  Ate pizza and chatted about leaving in the morning and getting packed up.  It's been a wonderful dream come true for Jammie and she is very happy that her dream came true.

Riding the Storm Out

Well, it's a dreary kind of day with no sunshine.........umm but no problem I see my beautiful daughter get out of bed and go to the balcony immediately.  She smiles as she looks at the ocean and I watch as she is taking this all in.  It makes my heart melt as I watch her stand there just loving everything about being here.  Sun or not does not matter she is just happy to have this dream of hers to come true.

We are taking our time this morning and getting ready to eat breakfast, which is paid for by the Patricia Grand Hotel.  It was so nice when we arrived at breakfast we were seated in front of the big windows to enjoy the ocean as we ate breakfast.  Super sweet for all of us to enjoy. We are  being treated like royals from England LOL.  I just can't say it enough how much this means to Jammie to be treated so special.  We enjoyed a delicious tasting breakfast and chatted about what we wanted to accomplish for the day.

Dana, a friend of mine had mentioned about a wheelchair that you can use on the beach.  Anna Bowers the corporate manager had also mentioned it and left a number to call.  There are only 3 so I called at 9 am and was told that they were all being used. I explained how important this was to her that she at least to go out on the beach one time.   I was told if one was returned they would be sure to call me.    No more than 20 minutes later I received a call that that Police Department had one and was going to deliver it to the hotel.  I cried and told her how appreciative we were that she helped make this happen.  I went right downstairs as the chair was going to arrive within 10 minutes.
I no sooner than got downstairs and I saw the police in a truck with the beach wheelchair in the back.  A guy thought I was in trouble and said oh that's not good the police are here, I laughed and told him it's ok they are bringing a beach wheelchair for my daughter.  He laughed with me and ask if I needed any help.  Nope, I'm fine but thanks for the offer.  I am smiling as I watch the officer unload the chair.  I have never seen anything like this before.

Jammie is now downstairs and I put her in the chair, Marlon will catch up later with us.  I don't get but her down to the beach and there is Marlon.  Thankful for that as he wanted to push her while I take photos.  Check out the smile on baby girls face just love it.  She did not think this was going to happen. God is good. Prop her oxygen machine on the chair and she is ready for the beach ride. 
 Marlon thank you for being there for Jamster and me, Love you so much.

As we are walking the beach Jammie's goal is to find some seashells for her kids and her Hospice team.  I am listening to her talk and she is saying how much she wished the Hospice team could have come.  She told me, Mom, they so deserve something nice done for them after all the good things they do for others.  I agree with her.  We will make them something nice with the seashells. :-)  Jammie was not finding any shells, but after we talked about doing all the gifts with shells she started pointing them out and I would get them for her.

 Look at her finding shells now and boy is she so proud of her finds.  The joys the beach chair is giving her is priceless.

We have found a bag full now and are heading back to the hotel.  We have run down 3 batteries so we much get back to get her oxygen.  On the way back we met a sweet lady named Jill.  We saw her out on the beach at 7 am and she was still out there looking for some special shells.  Jammie asks her how  was finding such pretty shells. Jill told Jammie that you have to get up early when the tide goes out it leaves behind shells,  Jill gave Jammie her prize seashell find of her day a sharks tooth.  Jammie carefully  wrapped the tooth in a hankie and thanked Jill.  Moving along the beach I took a turn at pushing Jammie in the beach chair.

We saw lots of birds on the beach some on the ground and some flying around. I stopped so Jammie could watch the birds for a while.  

 Birds in flight............

Marlon is going to push the chair the rest of the way back to the hotel.  

Jammie is not quite ready to go back inside even if it's windy and cold.  She asks if she could just sit and listen to the sound of the ocean and watch the waves crash onto shore. This picture is worth a million to me.

 Well, it's time to get warmed up and eat lunch.   As we got back to the room Anna brought Jammie a different shirt that was her size and Jammie gave back the other one that was the way to small.

Anna asks how the sleeper sofa was working out.  Since she asks we told herTHERE was only one bed and I slept with Jammie and Marlon slept on couch.  She said we needed a 2 bedroom suite so we could all sleep comfortably.  The next thing I know she is calling and making arrangements for us to move.  She said to give her a while and she would get things taken care of.  After lunch, we got our swimsuits on and went down and sat in the hot tub then rode around in the lazy river ride.  Fun FUN

 Back to the room and cleaning up and getting ready for the evening.  We also packed up to make the move from the 5th floor to the top of the hotel floor 19 room 1906.

 Wowza this place is beautiful and has 2 beds.  :-) After the move, we are loaded in the van with the wheelchair, portable oxygen tank, and large tank so we can have enough oxygen for about 4 hours.  Marlon pushed the chair and took her to Hard Rock Cafe so Jammie could buy a shirt.  She so talked about going there before we even left Gahanna Nursing Home.  So happy she got another wish come true.

Jammie and I shopped till we were tired of shopping and were hungry.  We stopped and ate at Liberty Brewing.  It was Happy Hour and so we all ate appetizers for dinner, seriously the food was very good.  It's raining pretty study now and we are ready to go back to a hotel for the night.  It's been a busy day full of lots of fun activities.