Posted in Ovarian Cancer, Praying, Something to think about, support system

WE’RE CONNECTED TO OUR LOVED ONES

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This is the face of a young woman who is taking her last round of Chemotherapy, yesterday, Tuesday, January 24, 2017. I am grateful to God for all of His mercy. 

Guess what? I didn’t realize until yesterday how much my daughter’s illness had taken a toll on me, too. But when I knew that she wouldn’t have to be extremely sick for days on end; when I realized that she wouldn’t blow up any more (she got bigger from the 3 different chemo medicines they were giving her), when I knew that I wouldn’t have to hold back my own emotions when she would say to me, “Mom, I’m just sick, so sick,” after she took those treatments; when I saw that she smiled genuinely in this photo; when she called me and said, “Mom, in two weeks we are all going to Red Lobster, and I am going to eat and enjoy it,” (she didn’t enjoy eating for months because she said that all she could taste was the medicines they gave her). When I could see that she wouldn’t spend hours just lying in the bed trying to rest from those treatments; when I knew that eventually her hair would grow back; when I knew that my youngest daughter had changed tremendously during this ordeal and that she’d never be the same; she had grown up that much more; when I knew that she was planning for the future when she said to me, “Mom, I want to move to another state…” When I weighed all of these items, I realized that I was weak with relief. I really couldn’t do much yesterday except thank God. 

Friends, we’re connected to those we love and what happens to them affects us. You may say, “I know that.” But when you have to stand by and helplessly watch as the one you love suffers, whatever the issue, be it physically, mentally, emotionally, financially, or spiritually; you’ll see even more clearly that you suffer along with them. 

For the first time in months I am focusing on myself. But if I am to be honest, I still have one eye on her. She will still have rounds of tests to do and blood to be drawn from time to time, but on a whole I have to say WE have come a long, long way.  

 

Rosa

Posted in Illness, Ovarian Cancer, support system

BREATHING EASIER EACH DAY NOW!

Well, it has been a while but I am able to say that my daughter  Johanna, has taken her last Chemotherapy treatments and just a few more tests and then a CAT Scan and I believe she will be in good health. 

I have to share with you that she has changed since last year. The baby-like daughter that made me laugh because she loved to be babied, has gone. In her place is a young woman who told me just today, “Mom, I’m alright.” I smiled at her and thanked God for His mercy to her and to all of us, her family. She wants to move to another state now. I can see in her eyes she wants a different future, and I can tell she isn’t afraid of it either.  She still has to be checked out every three months for the next five  years to ensure her health remains, but we’ve all come this far and we’ll go even further. Her journey isn’t completely over, but the road isn’t so rocky now. Praise God!

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5-year old Johanna
5-year old Johanna

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To Johanna and all others who have battled cancer of various types, and their loved ones who supported them the best they knew how…

To everyone who whispered a prayer for my daughter, Johanna, and rooted for her…

To everyone who said a comforting word to my blogs and gave words of encouragement…

THANK YOU AND HAPPY NEW YEAR!

Rosa

Posted in family, Ovarian Cancer, support system

JOHANNA’S JOURNEY PART 5

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Johanna and her older sister Erika brighter and happier days
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Johanna and her sister Erika difficult days

 

You  may or may not know that Johanna is a writer and has published two books. She has publishing contract for 3 books. The problem with the 3rd book isn’t that she cannot write it. The problem is getting the strength and stamina to write it. I said that because when I saw how sick she was last week, I really thought she was going to have to go back into the hospital. Not only that, but twice she said to me, “Ma, I can’t think straight. I can’t think.” I was so concerned about it when she said that. We both found out that her not being able to think clearly is what the Chemo nurse called “Chemo Brain.” Have you ever heard such a thing?! The treatment makes her fuzzy for a time. I have been totally helpless as to what to do. But after about 2 days, she’s sharp as ever. When she’s clear-headed, she can think once again. 

I confess that her illness has taken its toll on me, too. But, my own feelings aside, I’ve seen my youngest daughter blossom under this affliction of cancer into a much more mature  young woman who is already thinking about relocating to begin her life anew after she wins this battle with cancer. I love the human spirit that God gave. It never gives up. It may get down at times, but it never gives up.  

More tomorrow.

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Johanna at Chemo clinic for her treatment – sad days

 

Posted in Child, Illness, Ovarian Cancer, Praying, support system

JOHANNA’S JOURNEY – PART 4

I CAN FINALLY TAKE A BREATH!

Late last night, Sunday the 11th of December, I spoke with Johanna before she retired for the night and I could tell that she wasn’t so strained. I asked as I always do, “Johanna, how are you feeling?” When she spoke I could immediately tell that her voice was a bit stronger. She said, “I am a little better, Ma.” When she said that, I took a long deep breath. I smile as I think about it now. I really didn’t realize that when she and I spoke I was holding my breath. Most of last week and the weekend she was terribly sad and sick and she had little to no strength. When she would cry a bit, I wouldn’t really know what to say. It’s normally easy to speak when not sitting in the hot seat. But it wasn’t easy for me, so I just sat quiet and she began talking. That did my heart good. I just listened. I think the short talk was therapeutic for me, too. 

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I can breathe easily for a few days as she is stronger than she was all last week. When you love someone, especially your child, and they are going through difficulties and illnesses that you can’t take away or cure, you’ll find that everything gets in perspective. All of those “other” things that were so important before are quite unimportant. In fact they are an insult to the present circumstances. My desires fade away into one request: “God please let her get a little rest tonight.” That has been my one desire and the Lord granted my request. She is even laughing and talking more. I can finally take a breath.

More tomorrow.

 

Rosa

Posted in family, Illness, inspiration, Jesus Christ, Ovarian Cancer, support system

JOHANNA’S JOURNEY PART 3

This past week of intense Chemotherapy has left Johanna, in her own words: ‘SICK.’ She has been heaving every day. When she gets up she up-chucks, during the day she is throwing up. At night she can’t even take the medicine to help her stop heaving because she can’t get anything in or keep it down. It’s been a long week for her.

Johanna has an angelic voice. She writes music and sings it. She wrote a song some years ago and she sang it in church once, too. Here are the lyrics. I hope you are encouraged and inspired by them as you go throughout your day.

 

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LIFE WILL BE BETTER

Verse 1

So you’ve got problems, I’ve got some, too.

Feels like the whole world is against you

Like there is no one who knows what you’re going through

Well, I’ve been there and I can tell you.

Chorus

When you learn to trust in Jesus

When you give Him your all

When you show your faith won’t waver

Then life will be better. Then life will be better.

Verse 2

Feels like there’s no hope. I’ve felt that too.

Pain is your present, your future, too.

Just want a day when your heart’s not in two.

Well, I’ve been there, and I can tell you…

Chorus

 

Verse 3

Cried through some long nights, I’ve cried some, too.

Praying for the moment when dreams will come true

Life ain’t so easy. It’s harder on you

So just do as I tell you to do.

Special Chorus

Life ain’t the best and you’re just living

Things can’t get worse but then it is

How can you see the forest for the trees

Well, I know just what you mean

Chorus

But it’s when you learn to trust in Jesus

It’s when you give Him your all

When you show your faith won’t waver

Then life will be better. Then life will be better

(Written by Johanna Parker, who lovingly gave me permission to reprint it.)

More tomorrow.

Rosa

 

Posted in family, Illness, Ovarian Cancer, support system

JOHANNA’S JOURNEY PART 2

It’s very interesting to watch twins grow up. In a nutshell Jennifer the older twin is an African Violet. Johanna the younger twin is a shrinking violet. Truth. But where Johanna shies away from the public eye, she makes up in love for her family. She is one of those people who love to be around her family and that’s enough for her. High school  not withstanding, Johanna made very few waves. That’s just not her personality. When something happened or she became more of an extrovert, it was because I insisted on it or she was with her sisters. 

Her  mindset for many years was that of a young child. What I mean by that is she argued vehemently with a 6-year old and she was 14. You would have thought that they were two grown women arguing. It was so funny. She saw nothing wrong with arguing with her 6-year old cousin. So, she was baby-like in those matters. Another aspect of Johanna is that more than any of the other children, she knows her daddy well. She can understand what’s in his mind. She’s been able to do that since she was about 6 years old herself. Johanna had a simple wisdom then and she has a much more mature wisdom now. She hangs onto every word that daddy says:

Johanna: Mom, my ponytail came out at school today (she was about 10 years old) and the other kids laughed at me.

Me: Oh that’s not nice. I am so sorry.

Johanna: That’s alright Mom, because Dad says that when people laugh at you and make fun of you they will be laughed at, too.

Nuf said.

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Daddy and daughter just before surgery in August, 2016

She and her dad have always been close, but this illness has made them compadres. My husband takes her to all her appointments, the pharmacy, clinic for chemo, surgeries she had to endure. He cooks her breakfast, lunch, and dinner, he calls her “princess” at times, too. He takes her food to her most of the time because she is often weak and sickly these days. She was crying once and I wasn’t home, but on the phone with her. She stopped and said, “Mom, I have to hang up. I need to go and get a hug from my dad.” I am grateful for their closeness during this journey back to health. It’s a true blessing.

More tomorrow.

Rosa

Posted in Illness, inspiration, Ovarian Cancer, Praying, Something to think about, support system

WHY I AM NOT SAYING “WHY”

 

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Hi All,

It has been a whirlwind of activity and emotions with my daughter being sick. I have been examining my own reactions and thoughts about her condition:

I wondered why I wasn’t screaming, yelling and crying uncontrollably. It’s because first and foremost, “it’s not about me,” it’s about my daughter and her welfare and getting better. I don’t have time to indulge myself. Yes, at the beginning I cried for about 10 minutes. Then I stopped.  She needs me.

I wondered why I didn’t say, “Why me or why my daughter?” It’s because I know that pain and heartache and sickness and disease inhabits this entire world. It’s because others that I love and know are suffering, too. I watch them and how they quietly do what is necessary to endure and get better. I think that it’s unfair to say why me when sickness comes to all of us. By me saying why me, I suggest that it’s alright for others to go through but not me or mine.

I wondered why I was exhausted and would fall into the bed sleeping heavily. It’s because, as a mom, I am anxious for my daughter. It’s because if I could, I would take the pain for her, but I can’t. I can, however, be there for her and do all I can do to make her trial of illness a little better. I can do that for sure.

I wondered why I am not out of my mind with worry. It’s because in that state of mind I cannot be of service to her. I can’t even pray for her like that. If nothing else I can be a support for her and comfort as much as I can. Worrying my hair out keeps  me from doing that. She means more to me than my biting my nails down to the quick. I don’t have the right to do that. I have to be there for her.

Ultimately, I have a grip because the God whom I serve has already taken care of this situation.

Rosa

Posted in Autism, family, Something to think about, support system, Uniqueness

JONATHAN’S WAY CHAPTER 15

A NEW BEGINNING

Thank you all for traveling Jonathan’s Way with me. There’s so much more that I can share, but it’s not necessary right now. Suffice it to say that Jonathan is a true gift from God! He is such a unique individual and I wouldn’t have it any other way.

As I write this post, he is next to me with his phone (His Aunt Jennifer gave it to him) and his ear buds in and laughing about something he is watching on YouTube. I had no idea that YouTube had things like contests for kids to guess which fries or nuggets or ice creams are the best. Traveling Jonathan’s way, I now know that.

The last video game I played before Facebook was Pac-Man on an old Nintendo. Jonathan introduced me to Pokemon Go! He laughs and laughs watching people on YouTube play it. I am just not interested in it at all. Right now he is watching bowling on it and commenting, “Seriously?”

He is reaching out for me now just touching my arm, nothing else, no requests. He feels at ease and comfortable with me. He feels safe. I am glad for that feeling he has. The world we live in isn’t safe all the time for our children.

WILL SOMEBODY TELL ME WHAT’S SO FUNNY ABOUT PASSING GAS! But I guess that’s Jonathan’s way.


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In September he begins middle school and the journey starts over. It’s a new beginning for him and for me and for all of our family, as we travel Jonathan’s way. One of the best bloggers I know is David Snape, and  when I asked him a few days ago what advice he had for me about Jonathan going into middle school, he simply said that he is going to learn a lot in these next five years. He also said that Jonathan would be alright. Thanks David. I appreciate you.

Hey guys, don’t be a stranger. I am a book editor, but I also love reading your blogs. If you have some tips or  even advice for me as I travel Jonathan’s way, feel free to share it!

Don’t forget, I’m here for you.

Rosa

 

Posted in Autism, Early Intervention, Early On, support system

JONATHAN’S WAY CHAPTER 12

EMBRACE ALL THE HELP YOU GET

I can truly say that I have been blessed to have the best help and resources for my Jonathan. I don’t have but one complaint—I can’t take his elementary school teachers and para support personnel with me to middle school.

From his first pediatrician to his first neurologist, his Earl-On professional who first visited me, the school district special education persons, bus drivers, Kindergarten through 5th grade teachers, his resource teacher (the best), social workers, speech therapists, psychologists, principal, secretaries, lunch aids and especially the friends he made in elementary school, Jonathan’s Way has been forged by the best of people. I am blessed to have known them and I keep in contact with some of them even now.

  • His pediatrician told me, “Mom give it time. He may be a big boy, but he’s still a little guy.”
  • His neurologist told me to help his development by putting him into Karate classes. We kept him there as long as we could. He was almost a brown belt with the money ran out. My poor husband struggled to pay for it!IMG00610-20130218-1839IMG00443-20120723-1648
  • The Early On Professional told me, when I told her I wanted to home school Jonathan, “He has to get out and get exposure. You cannot home school him. She was so right. (I became his road manager taking him to every event, birthday party, pool party and school event I could).
  • All the teachers for the many parties, concerts, field trips, and more that gave him the exposure he needed. He developed so well.
  • Therapists, social workers, psychologists and para-professionals helped me to help him grow and develop into the pre-teen he is. They pushed me and I pushed him to go beyond what is expected of a “special needs” individual.

Don’t underestimate those who know about your child’s challenges. Seek them out and use all the knowledge they have. Follow their instructions to the best of  your abilities. Appreciate them. Thank them.

More tomorrow.

Rosa