Opening Up About My Mom

I have always been close to my mother. Ever since I can remember, every memory I have had as a child, was with my mother. I'm honestly at this very moment starting to choke up and tear a bit and I haven't even began to write. But I wanted to write a very personal post today.

My mother has always been there for me. Even when we have gone through periods of not speaking, she still never made me feel less loved. And I thank her for that. She's a very amazing woman even when she doesn't think so. She gave me so much and love and kindness growing up. I don't ever feel I am even half that as a mother myself today. I always strive to be as kind as she was.

This is a photo of us together when I was little. I was two years old walking along the river bank in my little white shirt and pants, while she is carrying my little brother. I don't have many photos of us together sadly, as she was the one always taking the photos instead of being in them.

I wish I had more photos of the two of us together from my childhood or even as a baby. I really would have liked to see more of them.

I have always known my mother had health issues. Since I can remember, she has always complained about pains and aches. Sometimes they were mild, and other times, they were very serious. When I was little, she seemed to always be sick. But she had to push through to care for my brother and I. She would get sick from the amount of pain she was in. But I never thought anything was truly wrong with her.

It wasn't until she came down to Florida for a visit. My parents always came to Orlando {where I was living} every year for my daughter's birthday. But for this particular year, we celebrated my little girl's 4th birthday at Disney World during the Mickey's Not So Scary Halloween.

During the parade, she had collapsed in the street in the crowd of people. I was so scared. She turned white and when the paramedics came through, we learned she had a mini heart attack caused by blood clots. This was the moment I actually truly got to see just how sick she really was. And it scared me.

To this day, I still cry about it. But after spending her entire vacation in a hospital bed, it was time for her to fly back home where I wouldn't get to see her again for another year. But we talked every Monday and Tuesday on the phone while I was on my way home from work. She started to get better over time and the blood clots were becoming less and less. 

This is a photo of my mother helping me on my wedding day. She is in the background lacing up my dress. The day that was so important to me and she almost couldn't make it because she had just had surgery and wasn't sure if the 1000 mile drive to Orlando would be ok for her. But she did it for me. She came and suffered through the pain to be with me.

My mom has never once, ever put herself first. She has put herself last for everyone which is why I think she has been losing the battle with her health. She never took the time to make sure she took care of her. She was too busy getting upset and stressed over my problems or my concerns or all my complaining.

And now, my mother is almost gone from me. This is the hardest part to write as I am now crying while typing this. Ever since, I finally saw first hand how bad her health was going downhill.

I noticed her saying all the time how she hurt. Her hands hurt, her feet hurt, her back and her head hurt....everything hurt. She was never comfortable and always in pain. She went to the doctors multiple times. Last year, she was told she had Rheumatoid Arthritis. I had heard of this several times. It seemed to be a lot of the symptoms she was experiencing.

She noticed her hand getting more and more painful to use and couldn't deal with it anymore. She saw a surgeon and he had told her that her hand was deteriorating. The nerves were gone and needed to be surgically reconstructed back together. So she went in to have that done. During her recovery, she saw an RA {Rheumatoid Arthritis} doctor. We got some shocking news. She did not have RA. The previous doctor was wrong about it and this doctor knew exactly what was wrong and referred her to another specialist.

So I was very relieved to hear my mom didn't have RA. However, that was the least of our concerns for what was coming. When she came back from the appointment, she let me know what she was told. We found out that she has been suffering from Systemic Scleroderma or also known as CREST. Scleroderma is very similar to RA but to me, it's very much worse.

If you have never heard of Scleroderma {like I hadn't before this}, it basically is a disease that calcifies the body....in real world terms, your body turns itself to stone. It's extremely painful, just as my mom has been describing the symptoms for years. She is in pain because her skin is hardening. Her organs are hardening and causing everything to hurt.

I didn't know how to feel or react when I heard the news. I just kind of was very stunned. I'm usually a very emotional person, but at first, I couldn't say anything. I couldn't feel anything. I just nodded my head as if I didn't really care or it didn't phase me. In reality, I do care. I care a lot. I cry a lot but somehow, I don't want her to see me breaking down about it. I don't know why either. I don't know why it's hard for me to release it out to show her now. I think because I'm still shocked.

Her back has been turning to stone as well as her hands and feet now. She has a very hard time moving her hands as they are stiff and too painful to bend most days. Which is really hard for her when my children come see her. I have two toddlers and an eight year old. The toddlers always want to be picked up and played with. And she hates that it hurts her too much to do a lot with them.

Her throat has now started to calcify and close shut. She has had her first "throat opening" already where they go in and scrape away at her throat to open it back up so she can continue breathing. Her lungs have started to harden as well. She had lots of chest pains from not being able to breathe in and out normal anymore.

At her last appointment recently, she was told her feet are deteriorating. I'm very scared she will have to end up in a wheel chair and never be able to walk again. Her face is also hardening. You can see it. She looks good though. She jokes about how she is getting a free facelift. I know it's not funny but she has to find humor somewhere in all of this. And it's true though. It pulls her face back so tight, she has been looking younger in the face because she skin is so tight.

My mother is only 54 years old. Yet, she is dying a very painful and slow death. The doctors told her that she may not live past 60. And that scares me. I do not want to lose my mother. Not like this. Not right now. Not in a few years. It is making me cry right now thinking about it. She's been a very good woman her entire life. This is not fair. I'm scared every day for my mom. I know nothing helps the pain. I know nothing can comfort her. It's been a year since finding out and she's been dealing with it well. I think she finally figured she had no choice. She knows she is dying and there is no cure, there is nothing that is strong enough to deal with the pain. It just is how she has to live until it finally completely takes over her body.

I will miss my mother when she is gone. I don't know how I will deal with it. I know it is coming and it's hard not to think about. I don't want her to miss my children growing up and missing what they will look like and become. I don't want to miss having to cry on her shoulder when I have no one else there to turn to. I don't want to miss her hugs or all the wonderful things she does for me to show me how much she loves me. But most of all....I don't want to miss her. Seeing her and hearing her.

So that is a struggle my family has to deal with until she is finally at rest. No one wants to lose a loved one. I also don't want her to suffer anymore. I know once it finally hits her, she will be at peace. But I don't want her to go. I really wish there was a cure out there for this. Maybe one day there will be. But until then, I only have so many more times my mother can hug me before she can't anymore. I am thankful I am closer to her now then I was when we lived in Orlando. I am glad we can go over to see her when we want to now. It makes it easier. I think I would have a much more harder time dealing with it if I could only see her once a year like I used to.

So please, I urge everyone to look at what Scleroderma is and how hard it is to be affected by it. I can only hope that she is a fighter and takes on a longer life than when they expect her to have. I don't really know what else to say. I'm completely in tears right now. It's so hard for me and I don't know how to tell her just how much it hurts me to have her go through this and how much I love her.

19 comments

  1. This was sad and beautiful, I think that it's good you let this out. As, you know I totally understand the pain, I now see this from another point the view (the child's) in my situation just from reading your story. I hope and wish your Mom well, and you make sure to enjoy everyday with her and your family and don't worry about the future. This is something that I am learning to do myself :)

    ReplyDelete
  2. Oh, this is heartbreaking. What a cruel disease. I'm so sorry that this is happening ... for all of you. My mother died last fall very suddenly and unexpectedly and while that's the way I think we would all hope to leave this earth, it's so hard for those left behind.

    ReplyDelete
  3. I'm so sorry to hear about your mom's diagnosis. :( What a terrible sounding disease. It's so unfair how these things happen to the best people. My mom has been in and out of the hospital herself with different issues but she still has no diagnosis. The thought of her being sick and not knowing how serious it could be just upsets me so much, so I can only imagine how you feel. *hugs*

    ReplyDelete
  4. Oh and I wanted to ask you, have you tried signing with Reg? Bryn does know quite a few words, but talking is a struggle for her because of her disorder, so she prefers signing. It's been a blessing to us because she can communicate and that helps prevent a lot of tantrums.

    ReplyDelete
  5. When I was writing this, I kept thinking about you throughout it as well. I even told my mom about you and how you are going through the same thing. She said she wanted to let you know that she hopes you feel comfort and relief and she's very very sorry this is a part of you as it shouldn't be to anyone.
    You really do help me with all your words of encouragement. It really really does help. Your advice about just being now and not worrying about the future, really opens my eyes. I need to start thinking this way. So thank you. And I really hope that you are doing ok and able to talk about everything as well through it all.

    ReplyDelete
  6. Thank you for your kind words. I am so sorry to hear about your mother. I couldn't imagine losing someone so suddenly. I could only imagine what you and your family had gone through. But life is very unfair in so many ways

    ReplyDelete
  7. Becca! I am so so sorry about your momma. This made me cry...I cannot imagine her pain, your pain and the whole families, through this. This is so heart breaking. You are always in my thoughts and prayers.

    ReplyDelete
  8. Thank you. It's been harder some days than others for me. On top of that...just my own personal issues...sometimes I think I just have to break down and cry. Today I did over so many things built up. But I feel better now. I'm very sorry to hear about your mother as well. That is what kept happening with my mother. No one could tell her what was going on... just waiting and waiting.... but she says she feels better at least knowing now even if she is dying. It's just hard to think about.

    ReplyDelete
  9. I have and I haven't really pushed signing with him. He seems to have his own little "language" to where I know what he usually wants. He makes different sounds for different things. Like one particular noise he makes is for food, another if he needs a diaper change, another if he wants you to watch him play with his trains. So that helps to be able to know which noise is which he is making.
    He does though listen and understand very well which is why I am not worried about his speech. If you ask him to go do something or bring you something, he goes and does it. So I know his brain is working...I just don't think he is ready to talk yet. When Natty was little she learned sign language and it was wonderful. But right now, Reg communicates with sounds and noises.

    ReplyDelete
  10. Well you can't force a kid to talk or sign. It's good that he has a way to communicate that you understand. That's all that really matters. I think some kids are just late talkers. I refuse to force Brynna to go into intensive speech therapy because she is not even 3 years old and she doesn't need that stress. It's hard sometimes because everyone is acting like she will fail at life if she doesn't start talking, and it is hard to see other 2 year olds chatting away. But I know she will learn in her own time, and we love her just the way she is, no matter how she communicates.

    ReplyDelete
  11. I don't know what to say except your mom is in my thoughts and prayers. I don't know if you pray or not but it does help. <3

    ReplyDelete
  12. I am so sorry to read this. We will be praying for you and your mom as this will be very difficult. What a wonderful mom you have.

    ReplyDelete
  13. You are so right. And people keep pushing me about trying to get him therapy for speech. I see no need nor am I even worried about it the slightest. I just don't think he's interested in talking. I really think some kids just are comfortable without speaking and like you said, they will when they are ready.

    ReplyDelete
  14. Thank you Tammy for the kind words. I wish she could get better. I wish there was some hope she will but she will die from this sadly. But she is a good person. No matter how upset I have gotten at her, I know she has been an incredible mother.

    ReplyDelete
  15. Thank you for being brave enough to share your story. I'm sorry you all are dealing with such a cruel disease. I hope your happy memories bring comfort.

    ReplyDelete
  16. People always have to put in their 2 cents. We started therapy with Bryn and it just didn't sit well with us. Why should a 2 year old be forced to learn something? They have plenty of time to learn! We were worried she'd become stressed and that it would do the exact opposite and make her try to talk even less. And they wanted us to go from 1 day a week to full time preschool with speech therapy 5 days a week?! No way, we decided to just wait, no matter how many people harassed us for it.

    ReplyDelete
  17. Thank you for the very sweet and kind words. I hope one day, we all feel better about dealing with this. I don't know how to right now but I'm trying

    ReplyDelete
  18. Good for you! We are the same way. I don't want to force or push anything. I could see if he showed signs of absolute no development... but his brain works just fine. He just doesn't like to talk with his mouth open if that makes sense. He makes noises for everything but he keeps his mouth closed as much as possible... except when he cries. I don't' see what the point of 2 year old therapy is either. My parents did it with me and I felt it wasn't helpful and a waste of money

    ReplyDelete
  19. I know that you and I are no longer on speaking terms, but I am very sorry to hear about your mom's health. I knew she was not feeling well but I am so sad to hear of her diagnosis and current condition. Hang in there and just enjoy the time you have with her. Take as many picture of her and you and her and the babies as you can.

    ReplyDelete