My last post was two months ago. I certainly was not sure if I would ever write again at that time, and I am still not sure what I am going to do next...or if there is still anyone out there reading. But that's okay. I am writing today with gratitude in my heart, and a completely new life that I am living.
Lots has happened since March. There was a turn around. There was a time not too long ago that even though I was feeling better and better physically, I was so changed emotionally that I did not know who I was. Transplant somehow took something away from me. I could not figure out why this was happening. I was breathing, I was alive, I was with my family, but I was lost. I guess I wanted so much more. Dreamt of being normal and capable, and as much as I wanted that, it was not happening. Not right away anyhow, and I wanted it right away.
During the last few months, I feel like I have been reborn. That's the best way to describe it. My past life living with CF lungs is just a faint memory. Did I really live my life coughing, wheezing, gasping, medicating? How did I do it for 30 years? I guess I did. But the fact is, I don't miss a bit of it. Not anything. The life I have now is better than a dream. Better than I could have imagined. The fact is, I have never been healthy, so how could I have ever imagined what it would feel like. Well, now I know.
It feels like each day is a new one. If I have a tiring day, I sleep, I eat, and I have energy for what is to come tomorrow. That's like most people I'm guessing. Well my CF body never seemed rested enough. I never ate enough, I never slept enough, I never coughed enough to clear my lungs. It was never enough. It was always a battle. Always a catch up game. These days my days look something like this:
6:30 - 7am Scarlett wakes up, so I get out of bed. (I take insulin - nothing else! My Cf lung 1 hour routine is now 30 seconds)
7-8am Martin and I eat breakfast with Scarlett (we watch daddy leave for work)
8-10am We dress, shower, have play time, or a walk, or grocery shopping, or if it's a Monday we clean the house (I take my pills at 9am)
10-noon Scarlett naps. I make sure laundry is done, bills paid, lunch made
noon - 1pm We eat lunch.
1-3pm We usually are outside again. Long walks, shopping on yonge, coffee with a friend, a play date,today was an afternoon in her blow up pool in the backyard (great fun!!)(2pm pills)
3-5pm (sometimes 230 -4pm, Scarlett naps again) During this time I make dinner. Since I'm eating nearly no carb right now, I always have to prepare the meat, veggies, whatever is on the menu. We are eating well these days. I am so happy to be able to prepare fresh food for my family. I was so sick for so long that we had to sacrifice very healthy eating. These days Martin, myself, and little Scarlett are eating all veggies and fruits and lean meat. (Scarlett of course is allowed carbs as a baby should!!)
5-6:30pm We eat dinner. Martin is home anywhere during that time. We all eat together, and talk about the day, and watch as Scarlett makes the biggest mess possible as she learns to eat all sorts of things. We love it!!
7pm I go do yoga. Martin bathes and puts Scarlett down. She's usually so tired after our busy day, that sleeping comes quickly and happily.
8:30pm I return home, and Marty and I have some wine, sit on the porch, or watch a movie. (9pm pills)
10pm We are sound asleep. Scarlett is a great sleeper. Sometimes it scares me and I look in on her while she's sleeping. She often wakes up only once, sometimes I only hear from her at 7am, like clock work. There have been harder nights, when she was getting used to some changes. But that came and went. I don't blame her for having a hard time, with all that's happened. Actually for a baby that has been through everything that she has, she is the happiest, most well adjusted baby I know.
For those of you that have followed closely during the past year or two, you'll remember that my mom was living with us for about a year. A huge sacrifice on her part. Well, my mom has moved out. Sooner than I ever thought she would. I just started to do so much and feel so good, that we were all able to move on with our lives. To me, the fact that I take care of a 10 month old all by myself all day, and the house, and the garden, and I make the meals....(well you get the idea) is an absolute miracle. Never in my wildest dreams did I ever think I would be able to. But the truth is I do it with pleasure, with a smile on my face, and more gratitude every day.
The one constant these days, is that I am more thankful than ever. At least once a day I will do something that makes me teary eyed. I will be in the grocery store and people will be smiling at Scarlett and I and telling me that my daughter is beautiful and I think, yup that's my daughter. To them I am just a regular mom. How cool is that? The other week I decided to run up a hill with the pram. I don't really know why, may be because I could. And I did. I felt like I was flying. By the time I made it up the hill I was in tears. A month ago I did my first power yoga class without once stopping or resting. It was amazing. My body and mind felt like one. Last week I decided to take Scarlett on a day trip to my in laws cottage. I packed us up, and spent the day at the beach. Something I never thought I would do by myself. Scarlett and I had the best time. At one point I walked past the cottage where I have spent some time during the past few years. Often not being able to go to the beach since I was so tired and sick. Often watching families walk as I stayed on the porch or inside. On this day, I wish I could go back in time and hug that girl on the porch. Tell her not to worry, good things are coming your way. Just hold on, be strong. That girl that I was, that I no longer am. I wish she could see me now.
I have also had quite powerful moments when I think about the woman that lost her life 6 months ago. A woman that never imagined how her life would end, and I am sure never imagined that she would save a life as she lost hers. Thought I know she was not aware of her fate, and thus not aware of mine, I like to think that her spirit knows. I often look up to the sky and thank her quietly. Her family might think they understand what they did for me, but I don't think it's possible to understand. I wish I was articulate enough to express to them (and I have tried) what my life is now. To thank them in a way that would mean something - to find those words. I am not back to the person that I was. I am a new person. A person that has the luxury of health, and happiness, and the privilege of insight, as I know how it feels not to have any of those things. It makes me so sad to think that we are not all organ donors. That we don't all think about the lives that we could change. The responsibility that comes with living in a world filled with our brothers and sisters. I urge you all to make that choice. Become a organ donor and become a hero. What a legacy to leave. I think about my donor and her family all the time. Mostly in awe of their ability to think of others when their world was crashing down. It seems like an obvious choice, a simple choice, but the donor numbers in Canada will tell you what they did for me was extraordinary.
My New Treatment: O to the 2
9 years ago
19 comments:
It is so good to hear from you again. I check in every now and then wondering if you would post again. It is great to hear how "normal" your life is these days and how healthy you are. Your brother posted some pics of you recently and the one of you lifting your body off the ground brought tears to my eyes. You look so strong and radiant in that photo. I knew that you were doing well but it is great to hear from you just how well.
I really am so very happy for you.
Julia
I am so glad to hear an update from you, I have wondered...I have prayed for you and am so glad you are enjoying life to the fullest with your husband and baby!!
Natalia,
It's so good to hear from you again. I have checked a couple of times a week since your last post to see if you changed your mind and decided to post.
I am so glad that things are going so well for you. I knew that they would but you had to go through the tough times (to say the least) to get where you are now.
I saw the pictures on your brother's blog and you look FANTASTIC! Nobody would ever know just to look at you now what you've been through.
Keep enjoying life. It really IS yours to do with whatever you want now.
Alison
I'm still following you! And I am so happy to read about what your life is like now.
We are so happy that your life just keeps getting better and better everyday! Your willingness to share such honest and heartfelt gratitude towards your donors family certainly does prove that speaking your intent to loved ones left behind is nothing you, as a donor recipient,consider an easy one. The publicity that both you and the donor family have received has made an impact that will last for many generations to come. I already know that locally(Aylmer area,Ontario), a young 16 year old boy's family made the life-saving/life-altering decision to follow their sons wishes and donate his organs after losing him in a car accident. And many people, young and old, have made that same decision.
Glad to hear that you have adjusted to your new life and new role as a "full-time healthy active Mom"! Continue to amaze us!
I know you don't know me Natalia. I posted only once. My daughter had a baby born through surrogacy the same day your daughter was born. She also has a sister-in-law with CF.
I just want you to know that I pray for you everyday, and am thrilled for the life you now have. You are also a wonderful writer, and have brought tears to my eyes many times since I have followed your blog. I was so glad to see another posting.
Welcome back!! What a wonderful surprise this was!
It's wonderful to hear how 'alive' you feel and amazing that you are able to 'do it all'. You know, there are plenty of women that have never been anywhere near your shoes that have trouble keeping up with all that you have taken on (myself included)!
go sis go.
It's the steroids Cyn, I'm slightly more powerful than Wonder woman on them =)
So happy things are going so well, my friend! It is SO strange to have "forgotten" how life was before. I know what you mean, and it was strange for me too. Now, over 9 years later, I have few memories of struggling to breathe, etc...it's weird! It's like your mind erases it! Strange.
So, so incredibly happy for you! It's a wonderful life!
Thank you, again, for writing this. I am closer now than ever to my transplant, and know that though I have been preparing in every way possible, that in a way, I might have a huge identity crisis after. It's weird, but in the morning when I cough my brains out, all I can think during and after is, I'm not going to have to do this forever. But then, in the next second, I wonder what it would even be like to wake up and do all the normal activities without the stop and start physically, emotionally, spiritually. Most of what I do right now is nurse myself into one activity, then rest, then another activity. What will I do when I can just BE? It is strange to think about, but glad I am getting to read your experience and others to help me prepare.
I don't think anyone can really understand unless they've lived the way a CFer does with their breath falling away for 30 years.
I don't know where this comment is going so I'll just say thank you!
Beth
cysticgal.blogspot.com
Welcome Back, Nat. Even if it is just for this one post!!! Missed you!!!
I am so excited that you guys are doing so well!!! GREAT news!
talk soon :-)
Mark
It's so lovely to hear from you and get caught up on what your life is like now. I'm so glad everything is going so well and that you're able to enjoy life to it's fullest.
Natalia,
Thank you thank you thank you for writing! I guess it was another "Divine Appointment" that caused me to check in NOW. My prayers for you today will be full of praise and hope for our God has done mighty things in many lives.
Big big hugs! Joy!
The Lord has lit your lamp and by Him you are leaping over walls!
Psalm 18: 28-33
For You will light my lamp;
The LORD my God will enlighten my darkness. For by You I can run against a troop,
By my God I can leap over a wall.
As for God, His way is perfect;
The word of the LORD is proven;
He is a shield to all who trust in Him.
For who is God, except the LORD?
And who is a rock, except our God?
It is God who arms me with strength, And makes my way perfect.
He makes my feet like the feet of deer, And sets me on my high places.
(no blog but immichal@yahoo.com)
Oh Natalia,
what a great post. You won't believe that I had read half of it without knowing. I come here to get to John's blog so I pass through pretty much daily. I read the second half of it and didnt register the "newness" of it a few days ago. So funny. Anyways, very beautiful, and speaking from one of us pre-tx fans of yours, very very helpful and inspiring once again. xo
Natalia,
Thank you for giving us a glimpse into your new life. Your journey has been truly incredible. As a CFer on the waitlist myself, I am thrilled to hear how wonderful life can be post-transplant. All the best to you and your family!
Sandy
Hi Natalia,
I have been following your blog all along but never commented. On a fluke, I just checked it tonight and was so thrilled to hear how well you are doing. This post has brought tears to my eyes. My husband has CF and has been listed and waiting for 1 year. We have a 2 year old son who is the love of our lives. Your story is so inspirational. I hope to see another update from you sometime soon as I was sad when I thought you weren't going to continue your blog. Best wishes to you in your new life! Stay well!
Sincerely,
Jennifer
Thank you Natalia for sharing your journey. It is wonderful to hear about your happy, healthy life.
I checked your blog today because Hattie had her lung transplant yesterday. It is a comfort to know that the healing can be so complete. Blessings to you and your family.
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