February 12, 2016

Tuesday's Update (2/9/16)

Hello friends. An update on my mama. She's been sleeping through most of her days but we're confident that her pain is managed and she is as comfortable as possible. She has had a few sleepless nights, but most of the time she seems to be resting well. Some days she's able to make it down our stairs and watch a couple episodes of "Everybody Loves Raymond" on our couch or go outside and get some sun. She isn't eating much food but is still managing to swallow 10+ supplements at once (this amazes us!) and drink water throughout the day. We have no way of knowing exactly what the next days/weeks bring but there are signs that her body is slowing down. Yesterday was my last day with the twins and although it was a hard choice, I have confidence its the right one. There is nothing I'd rather do now than be by my sweet mom's side as much as I can and I intend to do that. Please continue to pray for us. We ask God for strength, faith, peace, and comfort. 

February 4, 2016

But It Wasn't Supposed to be Like This

 photo Samantha and Corina  Family-0033_zpsh1yp1ehc.jpg

Yesterday was a rough one.

When my mom finally agreed to move in, I was ecstatic for so many reasons. I knew my mom's days were getting harder and I was thankful to be able to be in a position to help and serve her. We had an extra room and the physical strength she was lacking to do some of the more mundane day-to-day tasks that tolled her. I was also so excited to spend sweet time with her again, since we've lived apart for the past several months. We talked excitedly about food of the day themes (think Taco Tuesday), nights feeling like a slumber party, and even dreamed up fun outings we could go on.

But the day before she was supposed to move in, she went to the hospital. We were thankful when they only gave her a transfusion and sent her home. But as soon as we got home, my mom's pain seemed worse than ever before and we decided to take her to a different hospital. That's when the news came and everything changed.

She was not getting better as we all hoped. She was not getting stronger and her body was not healing.

This isn't how it was supposed to be. 

This weekend was her first full weekend in our home and although none of us know what the future (even tomorrow) holds, the grief has already begun. I grieve the days we should have had. I grieve the nights of laughing and staying up watching scary movies (fast-forwarding the extra scary parts of course), and I mourn the loss of the woman who was once so full of life every day. My mom is not gone. She is still here but she is not the same woman I've known for the past 24 years. Sleep and pain consume her days. Confusion too.

It wasn't supposed to end up like this.

So yesterday I prayed. And I cried. And I prayed some more.

God knows my heart. He knows my deepest desires, yet I continue to come before Him and ask for miracles. I ask for time. I ask for strength. Helpers. Comfort. Peace.

And he answers. He clothes me with comfort, even momentarily, so that my heart may be at ease. He brings human helpers. He gives me patience in the most trying moments. And strengthens me enough to be able to share this journey with transparency and vulnerability.

And you know what else? He brings hope when I need it most.

After spending all day in bed yesterday, sleeping on and off, we assumed my mom was asleep for the night. We were winding down and getting ready to head to bed ourselves when Jason came downstairs and said "Your mom is putting her shoes on". I ran upstairs expecting to find her confused and thinking she had somewhere she needed to be, but that wasn't the case.

"I don't feel like being in my room right now. I want to come downstairs and hang out with you".

God is good. 

We sat downstairs together for about an hour until she was ready to rest again but oh my goodness, I've never been so thankful for a little clear-headed conversation. She ate some of the pizza we had made ourselves for dinner (and ate more than she has in days) and even asked for a glass of wine. And we talked. About her strength. About her care and meds. About TV. About the twins.

Oh, and we laughed.

I don't know what tomorrow holds. Sometimes I don't think I'll even make it through this. I wrestle with anger, regret, and frustration. But God knows that. He knows my heart. And He loves me still.

He also knows last night I went to sleep with a BIG smile on my face.

I share this all because what good would it do anyone to hide the bad days? What is the value in sharing, yet sugar-coating? Life isn't sugar coated. This life is hard sometimes a lot of the time. But then again we were never promised it would be easy.

A few things before I go...
  • Nothing can quite prepare you for grief or loss. But that doesn't mean you have to walk into it completely unprepared. When my dad passed away, I didn't handle it well. Or really, handle it at all. I didn't understand grief, I felt alone, and I chose simply to not process any of my emotions. Heads up - this is NOT the way to go. So read up. Because trust me, you'll want the knowledge before you need it and although there is no book that will tell you exactly what to do, how to feel, or lay out your exact circumstances, books are a wonderful resource. Currently reading "On Grief and Grieving" by Dr. Elisabeth K├╝bler-Ross. I highly recommend it and even asked Jason to read it after me. I haven't highlighted while reading since college but this book makes me want to highlight every page because there is so much truth and it has already brought me great relief and comfort.
  • Yes, I'm struggling and my social life looks different these days, but I still very much need and want every one of you in my life. Sometimes I think about the year after my dad passed and remember the people that simply exited my life when I needed them most. I've never held a grudge because I understand, I really do. But for all the people grieving right now in your life (and in mine it seems like so many people around me have experienced loss lately) I will publicly tell you it is better to say something and have it be "wrong" (which it most likely won't be anyway) than to say nothing at all.
  • And for all you kind souls who continue to give freely of your time, energy, prayers, and kindness, THANK YOU. I cannot express enough how grateful I am for your love. I am encouraged by you. I remember your kindness and words in the moments I feel most alone. Thank you for being there. For bringing light into a dark time. And especially thank you to those of you with the strength and courage to mourn with me, share your own emotions, and cry tears with me. You are the best of all. 

PS. Thank you to each and every one of you who have offered to bring us food. We are so incredibly grateful for your generosity and during a season when time is just so precious to us, it really can be a blessing not to have to worry about our next meal. Jason's mom, Linda, has been taking care of us and making sure we're fed but since so many of you have offered, I've handed the baton off to her and we've set up an online "Take Them A Meal" schedule. Because the link to sign up includes our personal info, we're not sharing it publicly so if you'd like to sign up, either email Linda at ldonofrio7@gmail.com and she can send it your way or message/text Jason or I and we can send it to you as well. Linda will be the coordinator but please feel free to reach out to either of us if you have any questions. Thank you again for all your kindness. We love you all.

February 1, 2016

Remember to Breathe

 photo Samantha and Corina  Family-0006_zpsqcarudbh.jpg
A lot of you have asked how I'm doing. To be honest, that's a hard question to answer. I guess all things considered, I'm doing as well as can be expected.

I'm still working a few days a week and for most of the day I'm genuinely at peace, able to concentrate on what I'm doing, and manage to take care of myself and the little munchkins. When I'm at home with my mom, my focus is on taking care of what she needs and keeping her company so usually I can handle that pretty well too. But driving? Ha! That gets to me. I'm able to sit alone with my thoughts, perpetuate negativity because who's there to stop me & to be honest probably look like a crazy person because at some point in the drive I'm having a meltdown. I'm working on keeping my thoughts in check because getting worked up doesn't benefit anyone and I'm doing my best to rely on my trust and faith in the Lord but I'm human and the worries of this world get to me sometimes. 

So anyway, the other day I'm driving and in the middle of one of these episodes where I'm part hyperventilating, part ugly crying, wondering if I should pull over and get it together when I look to my right and see a sign. Literally a sign. "REMEMBER TO BREATHE. GOD IS OUR HELPER". Well I don't know who chose to put these words on that church sign, but I can't help but believe God had a little hand in it. Not only did I actually need to breathe at that moment, but the reminder that God is our helper couldn't have come at a better time. For the past week and a half, I have prayed fervently that God send me "helpers". In my prayers, I've even admitted that I don't know what that looks like but He does. While we've "figured out" a lot of this journey on our own, there is so much that we don't know and unfortunately because we're not the first family to go through this, there are people out there who have knowledge and wisdom that only comes through experience. Already, in the past week God has blessed us with people I know are an answer to that prayer, and for that I am so thankful. But the reminder was welcomed - that no matter how many humans we're blessed with, God is our ultimate Provider, Helper, and Father. I even drove back and took a picture when I was done with my errands.

 photo IMG_1136_zpsiappt4xm.jpg

We continue ahead, one day at a time. Our focus is of course on my mom, but J continues to remind me that to take care of my mom well, I also need to take care of myself. On Saturday night, he convinced me to leave the house and I was able to hang out with a lot of my friends who I haven't seen in a few weeks. It was good for my soul and I was thankful to get my mind off things, laugh, and catch up with friends. I have to keep reminding myself that being kind to myself and taking care of my body & soul honors my mom but I'm thankful J reminds me too. Sidenote: for those of you who know Jason, you know he has an incredible outlook on life, can brighten anyone's day, and has more patience than anyone I've ever met (he's dating me, so that's testament enough to the man's patience). By example, he encourages me to be better every day and I just can't thank him enough for the way he continually supports and loves me. Ladies, don't settle for a man who doesn't love you well, because they're out there!!

Now for an update:
Last week, we started learning more about Rick Simpson Oil (RSO). If you're not familiar with it, there is more info at this link but RSO refers to "extremely potent decarboxylated extracts produced from strong sedative Indica strains, which have THC levels in the 90% range. This harmless non-addictive natural medication can be used with great success, to cure or control many medical issues". Over the past 6 days, we've been implementing RSO into her med schedule. Her body took a few days to adjust to it, but over the past couple days we've found it extremely helpful. Because of it, she is getting pain relief that the narcotics weren't able to give her, she's been able to rest through the night multiple times (we praise God for these nights because they don't come often), and we've reduced her pain meds by more than half. It has helped with anxiety, restlessness, and confusion and has given us great relief and hope. It's even increased her food intake which we couldn't be more happy about and seeing her be able to rest peacefully and with minimal pain has been truly wonderful. 

 On Friday, we got the go ahead to bring my sweet mama home from Friendship Village and we spent the weekend doing our best to get her settled and comfortable. She spent Friday and Sunday night awake, restless, and a bit confused until she finally fell asleep in the early mornings. But for the rest of the weekend, she rested well and slept a lot. She was able to get outside in the afternoons and was even up for visiting with Jason's parents for a few minutes last night when they stopped by with food.

It's a new week, which of course bring new challenges, but we are thankful for it. We will continue to do our best and adapt to what comes next. Until next time, thank you to everyone who continues to love, pray, support, and reach out to us. We are so grateful for each of you and your generosity. 

To our prayer warriors, please continue to pray. We continue asking God for wisdom and guidance, for restful and pain-free days and nights, for lucid moments when my mom's one-of-a-kind personality comes out and we're able to connect with her, and for joy and peace that only comes from Him.