Wednesday, March 31, 2010

The Sun is Setting.

I see spots from trying to look at the sunset before it is just right. I am in the hospital with Zaachi and he has been playing with his friend Alex all day. I am sleepy and feel a bit anxious today. Trying to organize life and everyones schedules is not an easy thing for me. I feel like my head is swimming. Now, the sun is gone and the sky is lite up with beautiful yellow and blues. Tomorrow is going to be a nice day I heard.
So the update on Zaachi is that he is in the hospital till the 3rd of April. Then next Tuesday his immune system will bottom out for about a week. So, we will be home a lot. Then, on the 16th we will head to Philly and prepare to depart for Fl. the next morning. We will be in Fl. on his Make-A-Wish till the 23rd. Then on the 26th we go to Philly for an MRI and then surgery is on the 27th. The Dr. is gonna try to save Zaachi's leg, but if there is not enough good tissue they will need to amputate. Around a month after the surgery we will go for lung surgery to remove the small tumors in his lungs. Thanks again for all the prays and support. We are so blessed!

Sometimes when we try to figure thing out on our own we just get annoying spots. But just like the Sunset, in it's perfect timing it is beautiful and clear. Sometimes in the journey I want to look ahead, I want to know what is next, I want to know how to plan, but just like the sunset we can only really see it when it is time. I need to relax and realize that God has always provided, he has never given us more than we can bare, and he has always been with us.

Cherish the sunset, for it is fleeting. Our lives are fleeting,... There is a race to be run and at the finish we will receive our reward. I have often thought that even if there were no hell to be feared or heaven to be won, I would live just as I do. I am never alone, I am held by Him, I have purpose in him....
Christ ministered to whoever was in front of him, don't get to busy that you don't see the opportunity's to love, to embrace, to cherish who is in front of you at the moment. There are souls that need that love, time is short, the sunset is almost over. Today I choose to change yet again, today I will try to embrace today, tomorrow..... I will face .......tomorrow. Today has enough worries of it's own.

Tuesday, March 23, 2010

My Son. FUNNY son.
Messy Maggie. She loves playing in the dirt. I think it is the WV in her.
This is Zennia. She is Jayden's Bestie. We call her our own as well.
Beauty along the way. My friend Lisa and her family gave us beautiful Tulips. I had them on the dinning room table. Over the weekend I came down one morning and found the tulips glowing with a beam of natural light from the kitchen window. I tried to capture the beauty.
Just another day in the Park. We have our devos on Sunday in the Park since Zaachi couldn't be around a lot of people. We saw three horses. We love Lehigh Valley Parkway.
My goofy kids, Xavier and Jayden.

Our Family

Fear?

"The fear of God is the beginning of wisdom". These days a reality that I may have been unaware of has become evident. I am not in control and nothing is stable, except GOD. I fear him, I am reminded of the line in the Lion, Witch and Wardrobe. Lucy was watching Aslan walk away and it was said, "He's not safe, but he is good."

This life is not safe in some ways, but NOTHING can separate us from God. Spiritually we are safe, but physically we all have a burden to bare, a thorn so to speak. These weaknesses keep us on our knees.

I looked into the tear flooded eyes of my beautiful daughter as she expressed the pain of struggle. I so wanted to fix it for her, I wanted to erase the pain, I wanted to make it all better. But I can't, I don't obtained the power to do so. God does, but I told her how Paul struggled and it kept him dependent on God. If we felt we could do it all on our own, would be cling to him? I venture to think, I would be far from him, sad to say. I struggle, we all struggle, thank God we struggle. Keep me close Lord.

I welcome apprehensively, the "fear" I sense. Not fear like I have known before but a reverence a reality that HE CAN DO ANYTHING, he holds me. I am just a speck, my life a vapor. He is to be feared and revered. I never understood and I am sure that I still do not understand fully, "working out my salvation in fear and trembling". Today I walk forward, blind to my future or that of those around me, but confident that if I hold on to him and be obedient, my ultimate destiny is secure. "NOTHING can separate us from the Love of God."

I will try to reference all the scriptures that this is based on. I praise God that my parents from a young age and myself as a young adult memorized many scriptures and they are just a part of my thinking, however my lack of attention to detail leaves me blank as to where they are located in the WORD. OPPS.. another struggle.

Sunday, March 21, 2010

Zaachi's Blog 3-22-10

Topic: Art

"Good Morning"
"How are you doin?"
"Lately I have been doing some art. I have been trying to paint and nail together wood. So, if you want to give me some tips, please do. I am not very experienced. Now, I am starting to paint a bird house. It's gonna be made of three colors, red, blue and yellow. And I am thinking of nailing a piece of wood, you know a long piece, and I'm gonna nail it there and then I'm gonna nail it to a tree. "

WHAT HAVE YOU BEEN DOING THIS WEEK?

"I have been spending a lot of my time outside, whether I am just out there enjoying the weather or doing something else, or taking a walk. But I do have a passion for art. So, I've been going outside and doing some construction work that includes art.

HAVE ANY FRIEND COME TO VISIT?

"Yes, my friend Alex and Godrick and Mathew."

WHAT have you been doing?

"Oh, we have just been hanging out. We played army men with Alex. Goodbye."

Sunday, March 14, 2010

3-14-10 - Trust

Both kids are asleep as should I be. Yes, Maggie is staying over with me tonight in the hospital with Zaachi. We came around 2pm and she did very well until it was time to go to sleep. She was really pushing buttons.....grrr. She was being a typical 3 year old. Zaachi was having some stomach discomfort but seems to be resting well now. I am trying to keep all these communications sites up to date so that all our wonderful friends and family are informed. Today Xavier, Maggie and I went to church and during worship I couldn't hold back the tears. It didn't help that the guy who was leading worship reminds me of my baby brother, whom I miss a lot rite now. But it is helpful to cry, there is such a release. The kids are fighting with feeling down and overwhelmed, but we are trying to hold them as close as we can. God has been faithful and has provided a way for them to go to a weekend retreat with North East Assembly. Our friends Luis and Kirsten pastor there and their church has been so embracing in the past few years. Kirsten and Luis have been a "landing pad" when we have been in Philly at CHOP. What amazing people, they love us, but what really blesses us is that they love our kids as much, if not even more.
Looks like we will also be able to send Xavier to Convention. God sees all of their hurts and is providing encouragement for all of them. We are trying to make everyone's rooms nice so that during this journey they have a nice place to retreat to when needed and feel comfortable.

Today a few people from Epic came to visit as well as Zaachi's PT. Then this evening Mrs. Heidi came baring video games and more Pop Tarts. Grandma Eve and Pop Pop Pop Tart also brought a few meals and a HUGE box of Pop Tarts. We have a large variety at this point.LOL SO much love!!!!! My kids and Marc and I feel so embraced......... God is faithful. I write all this because I want all to see God's hand is at work. I don't believe for one moment that God did this to Zaachi, I believe we all have frailties in our bodies due to the fall. Things like this are inevitable but he is a healer, he is a provider and is our Savior. Now, he can take what life has in motion and turn it around and use it to make us stronger, or heal us. But I will trust....trust that he will walk with Zaachi. There is nothing that can separate us from the love of God. I pray that it is in his will to give my son a long life, but I know that all of our days are numbered and again......I must trust. His ways are higher than my ways and his thoughts higher than mine.

Good night.....Trust....just trust and obey.

Saturday, March 13, 2010

The quiet

Thank God for YOU!

posted by Susan Telesha, Saturday, March 13, 2010, 8:15 PM

Today has been a busy day but a wonderful day. A new friend came over and hung things in Zaachi and Jayden's room. This person also made us dinner and has taken her son over to play with Zaachi in the hospital three days in a row. I am so blessed to live in such a caring community. Zaachi's Principle was over for awhile this morning and may bring some students over to visit after school on Tuesday. I should have a guest list. So many have gone over and loved on our little man. i spoke with Doug and Linda Sheriff today and told them of how Zaachi wants to raise money to buy XBox 360's for the peds unite at the hospital. They came up the an idea to help him fulfill his goal. They were so kind.

Marc officially has the floor down and everything is in his new room but his bed. Another friend said that they have a hospital bed that Zaachi can have. Also, The Allentown DA office gave Zaachi $500.00 and Angel 34 gave him $250 so Marc is on the search for a lap top and a flat screen. His room is gonna be so comfortable for him. Today we thought he might start feeling sick from the chemo but he was fine. PRAISE THE LORD. He actually has gained a few pounds since he went in on Thursday.

Tomorrow I need to dust and finish the carpet in Maggie's room and somehow get the hospital bed in. Then we will be ready for his return home. I couldn't have done it without everyone's wonderful help this past week. Thank You!

I am really tired but I am enjoying a few minutes alone. Mag fell asleep on the way home from dropping Jayden at a friends house. I enjoyed the ride back to the house just sitting in the quiet. I feel like I talk all day coordinating life and making sure everyone is informed. I thought of calling several people, but I think it was out of habit. I need to embrace the quiet instead of hurrying to do something to fill the void. The only thing that truly fills me is quiet, worship, journaling and talking to him. So with that I will go. I have caught everyone up enough for now. God bless and don't avoid the quiet, it gives opportunity for him to speak and be heard. Edit

Thursday, March 11, 2010

The only thing that doesn't change is that everything changes

This has been the week of changes.
  • Last Wed I found out that we were going to go to Disney early (from the 10th to the 18th).
  • Thursday we found out that we weren't going to go to Disney but would have surgery instead.
  • They were hoping to do surgery the 10th or 11th so we made plans accordingly
  • Monday we met as a family to talk to the Dr.'s about the diagnosis and treatment.
  • Tuesday we found out that surgery was gonna be a week later than we thought, on the 17th.
  • Wed. the 10th I found out that his tumor is growing too fast, they are gonna delay the surgery and do a round of chemo first.
  • Today I sit waiting for a call to tell me when we are starting the chemo
This is hard to keep up with. I am trying to keep everyone informed, plan for what's about to happen or rather what "I think" is about to happen, keep up daily tasks, finish rearranging and cleaning, making sure the kids have time to talk and be with us and also do stuff to where he can enjoy his day. I need help. I feel completely overwhelmed by all of this.
If anyone has time and would want to help let me know
  • play with the kids, Zaachi is home from school due to the situation
  • help organize
  • help make things as sterile as possible for him
  • help Marc finish up the flooring in Zaachi's new room
  • Make a meal
  • clean
  • baby sit Mag and Zaachi so that Marc and I have a moment together
We need help and realize we can't do this on our own. Our families both live far away. So if God lays something on your heart we are open to help.

Later

I didn't post this right away because I feel weird asking for help. I talked with Grandma Eve (Eve Yocum) and she convinced me that others want to be involved and need direction. So, I am posting this. Zaachi is in the hospital starting chemo, Marc is with him now and I will go over this evening to stay for the night. We rotate in and out so that one is at home and one is with him. If you would like to visit him he is at LVH Ceder Crest, go in the main entrance and go straight to the front elevators and to the 3rd floor. Turn right and keep taking rights till you see the doors with the Murial on them. Go to the door and ask for him and they will direct you to his room. If you are sick please do not go on the floor.

Thanks Friends,

Susie

Tuesday, March 9, 2010

Why do we try to hold on so tightly.

I have little motivation today. We met with the Dr.s yesterday. They confirmed that Zaachi does have cancer in his right leg and his lungs. They told us that the best thing is to get it out. So we are having surgery at CHOP on Wed. the 17th for a partial femur and full knee replacement. Then before they we leave we will also have the lung surgery. They said he may be cancer free for a few years, but it nearly always comes back and there is nothing they can do.
All this is hard to take.

Zaachi's Blog 3-9-10

"Good Evening, How's it doin?"

How are you feeling?

"Goofy and good, happy."

So what did the Dr.'s say is going on in your body?

"It's cancer again and they said that they are gonna talk to Dr. Mata about the lung surgery. They are probably gonna do the lung surgery going through my chest. So they can feel around in my lungs to see if there are any little bits of cancer that are hidden or as we like to call them, boogers. "

So, how does all this new news make you feel?

"Makes me feel depressed that this had to happen again."

Do you believe that God can heal?

"Yes, I do believe that God can heal."

Tell them about the Lemonade Stand idea.

"Well, I thought I should start a Lemonade stand to help raise money for the hospital and the clinic."

"Good night everybody. Keep praying."

Saturday, March 6, 2010

Much accomplished today, yet much still to do

Today I saw Jesus. I saw him in the lives of Tammy Kissel, Dec. Liz, Pam Gomez, Jill Merniger, Gramdma Eve, Pop Pop Pop Tart, Ann, Ashley and Laura, Sam and Irene, Bob and Bernadette, Mom. So many helped today. Some with entertaining and watching the kids, some with cleaning, some with hanging stuff, some with organizing, some with taring up floors and moving furniture. Wow, so much got done. I am sitting in a mess that I need to finish and listening to Mom and Marc cutting something upstairs for the floor. We could have never done this with out all the help.

Zaachi had a hard time today. Actually for two day now he just seems lost, grieved, broken. I know that God says that a broken and contrite spirit he will not deny. "Lord, touch our boy, your boy, he needs you so much physically and emotionally. We need your wisdom in how to help him. "
Tonight Nan (my mom, who drove in from West Virginia today to be with us and help out) snuggled with Zaachi till he fell asleep. It is so sweet to have her here. Oh, how my heart hurts for him tonight. I am praying for a more cheerful day tomorrow.

Monday we meet with the Dr. to discuss what his options are. We think surgery will be on Thursday.

I will continue to post at often as I can. Goodnight to all our wonderful friends and prayer warriors. Thank you for all that were his "hands and feet" today.

Thursday, March 4, 2010

How does one focus?

As I opened my blog to write. I heard "Turn Your Eyes Upon Jesus" on Pandora. I guess this is the answer to my question. How does one focus in times like these? I can focus by Turning my Eyes on Him.
"Oh, Lord, I feel like I keep moving but don't get anywhere. I am lost. God help me to focus on you and allow you to take these fears, burdens and anxieties."

Today we heard back from the Dr.'s that now they want to delay the Make A Wish trip and do surgery next week sometime. So, I will cancel the trip in the morning and start preparations for Zaachi's needs post surgery. I need a chair lift for the steps. I need to pull up the carpet in the office, I need to find room for the office. I need to do a lot of thing. Hopefully he will be comfortable in his new room.
I think my mom will be here on Sat. as well as some friends from City Limits. God is good because I couldn't do it without them. We learned from the last time that this is such a big task. God always provided, but there were some dark days.

So, today another series of changes and preparations. My day started with Mom calling to tell me that Dad was able to get everything worked out for all of us to stay together a few days in Fl. The excitement began to build in anticipation for what was about to happen. Then around 4 realizing that he wouldn't be able to go yet and reminded of how serious of a condition he is in by the urgency of the Dr.s.

What will tomorrow hold? I don't know but I will make a stronger effert to focus on God. He will give me what I need for my day. Grandma Eve is coming to Zaachi's Coffee House at school and she is bring her famous cup cakes for Zaachi's class. It will be a sweet day for I know he will be touched by the show of people. Xavier is going with me and also our family therapist (who are amazing). So, good night for now.

Wednesday, March 3, 2010

Make A Wish

We are so thankful for Make A Wish. They are sending us to Fl. for a week. We had planned to leave on the 21 but that got moved up to next Wed. the 10 as of today. I appears that they want to do the surgery before chemo this time and they want him to go on his trip first. The big problem is that his pain is increasing with every day. It hit me really hard today when I realized that with each day we have had to increase dosages. I haven't sent him to school for two days now. His school isn't handicap accessible. So, it causes aggravation in his leg to go up and down so many steps. Friday he is reading a story he wrote at a Coffee House at his school and we are gonna have a little party and make it his last day at McKinley Elementary. I hate that he has to leave his friends, but we don't really have a choice. He will be on home bound for awhile and then we will figure out what to do from there.
Life is changing so fast. Xavier is graduating in a few months, Jayden turns 16 in the fall, Maggie will be starting preschool, and Zaachi is changing with each day.
Tonight I had him sleep in Maggie's room (it is next to ours and on the 2nd floor) I read to them and then we prayed. Zaachi prayed that God would heal us all, emotionally, spiritually and physically. My heart melted, I can't imagine God's plan in all of this but that is not for me to question. I choose to trust, I choose to Praise him, even when I don't understand him. "God he glorified in my son."
I don't know what tomorrow will hold. I have a long list of calls, paper work, faxes on top of taking care of the kids while also packing.
God help me prioritize and get it all done.
We will have rooms to move, a chair lift to put in and carpet to pull up when we return.
If anyone wants to be involved we welcome help. We know that this is bigger than us. CHOP showed us a web site that helps communicate his progress and also gives a calendar to help coordinate volunteers. The site is secure. So if you would like to get involved or just follow his progress just send me your email address and I will send you an invitation.

Thanks