It's hard to decide what to write. I feel like I should focus on all the wonderful, positive things about our situation, all the tender mercies, all the amazing people....but I also just want to complain and vent. So, I will just be honest and try and let these posts be theraputic, whatever that may bring.
Last night he slept through most the night. Although for the 3rd night in a row he didn't fall asleep until after 11 - so late for him. He's still asleep now. He woke up once while they were taking his vitals and was in pain. His little body tensed up and I could tell it hurt when I moved him. He asked to "give mommy hugs" which means to hold him chest to chest bear hug style, but when I picked him up he was so rigid and stiff and couldn't relax. I called for more pain meds. I asked him where it hurt and all he said was "mommy kiss it better". He's said that a lot the past few days. That has been the hardest part for me.
Radom Thoughts.
The Port -
I hate it and I love it. I hate it because I hate that there is this permanant (three years seems permanent to me) forgien thing in his body that will be a site of possible of infection and soreness and a reminder of his illness. I love it because it's helping him get better. It's an amazing blessing of modern medicine. I haven't even really seen it yet. It's covered with mounds of bandaging.
The IV pole - Hate it
I wish they would just let me silece it when it beeps so loudly so often especially in the night. It makes my blood boil. Espicially when it wakes up my baby. I have silenced it a few times but it just goes off again after a few minutes until I can track down a nurse. Also, it's so annoying dragging it around with him and constantly making sure he's not getting wrapped up in it or that it's pulling at is chest. And I just hate the idea that he's hooked up to a machine 24/7....but again, love it because I know it's helping him.
The staff - Awesome.
The social workers - Awesome. Especially the one who found me when I was folded up outside Lincoln's room on the floor sobbing uncontrolably two mornings ago when I couldn't let him eat. I and needed a break and finally turned Lincoln over to Ryan after 12 hours of holding him. She kindly took me in a room and listened to me cry and vent. It's funny doing that to a complete stranger. But I knew that's what she was there for and I was grateful.
The dogs that come visit the patients - Awesome. Especially the ones with painted toesnails who wear sunglasses.
The other patients - Not even a word for how awesome they are. Especially Stevie and Garrison. They are 9 and 10 and have taken a liking to Lincoln. They hang out in our room a lot and answer all my questions about what it's like to have Luekemia and remind me that kids with cancer can still be happy.
My parents. - Best in the world. Drove 30 plus hours practically non-stop to be here.
He just woke up. More later.
20 comments:
Oh Cheryl. I have no words. Except that I love you. Never feel guilty about complaining or venting. These posts are raw, real and beautiful.
oh cheryl i have been wanting to call or come visit. andrew and i picked out a little gift for lincoln... maybe i will just drop it by your house. i'm so happy you have family in town to help and how great that they can stay for quite a while. i have a friend of a friend whos little daughter has leukemia....check out her blog if it helps to hear about others with the same thing...her blog is www.kissesforcami.com. i can't imagine seeing your child in so much pain that would be SOOO HARD. you are amazing. you all are still in our prayers.
We're thinking of your family and keeping Lincoln and the rest of you in our prayers.
You have every right to feel the way you do. You are stronger than you imagine and you are an amazing mother.
Prayers and love your way. You are amazing. Your family is amazing. One of my favorite scriptures: "This is the promise of the Lord unto you....wherefore, be of good cheer and do not fear, for I the Lord am with you AND WILL STAND BY YOU..."
I so pray that you will feel Him with you. Thanks for being an awesome Mom to Lincoln. He's so lucky to have you and your husband by his side.
You are so amazing, Cheryl! We are sending lots of love and prayers your way! Give Lincoln a hug for me!
Cheryl and Ryan: Although I consider your mom a close friend (she directed me to your blog), I have never met either of you. However I feel like I know you both so well due to Susie's constant and loving descriptions/stories of all of you. You have such an amazing extended family who love you so much! I just wanted you to know that complete strangers are thinking of you and praying for you. XOXO - Andrea Radford
I love that you wrote ALL that you are feeling. Your descriptions are so powerful and so moving. It tears me up to picture Lincoln hurting and you curled up crying. You will be strengthened to bear this trial. You have so many people who love you and are praying for you.
Cheryl, I can't stop thinking about you and your family. Thank you for this post, it made me cry. You really are such a strong, incredible mother. I love you so much!
Oh my goodness. I haven't seen you in years and years and I'm sitting here crying. You and your sweet family will be in my every prayer. Best wishes.
Cheryl, my sweet friend, I am trying to fight back the tears. I will pray for your sweet Lincoln as hard as I can. I'm grateful you're venting and are writing about this in such a real way. Thank you. It's moving and inspiring and heartfelt. love you!
I agree with Wendy, never ever feel guilty about venting, if anywhere, this is the best place to do it. You are able to share completely and then not have to repeat yourself a million times. I can't imagine what you are feeling but I am praying hard for you and your little Lincoln. You are an amazing mama who gives everything for your kids. I love you.
I think it is sweet that whatever pain, discomfort, or confusion Lincoln is feeling right now he believes and *knows* it can be cured by hugs and kisses from his mommy.
How wonderful that there are some "big boys" who are patients there taking Lincoln under their wing.
Lastly, I'm so happy that Lincoln is a patient in a hospital with therapy dogs who have painted toenails and wear sunglasses. Emotional therapy at its finest.
Bradford and I have been saying prayers every day for his "friend Lincoln." Stay strong. You can do it!
XO,
Heather
Sweet sweet Cheryl...You are amazing and strong. I love you! Praying praying praying. xoxoxox
You are so amazing and strong Cheryl. I'm glad that you are posting your true feelings and that you are able to still find positives in this awful situation. It made me cry thinking about Lincoln in pain and what it must be like for you to watch him. I pray for your family ever day, and I'm anxious to get back to Pittsburgh and help in any way I can. miss you.
I am thinking of you guys so much. I put little Lincoln's name on the prayer roll yesterday at the temple.
You are so strong.
Praying for you and sending my love for little Lincoln!
Cheryl,
I don't know if you remember me (Levi Hancock) or my wife Amanda (Diddy), but we heard the news and immediately wanted to let you know that you are in our thoughts and prayers. Our little Elijah was diagnosed with ALL on Christmas Eve 2008 when he was three. I can tell you that I know exactly the fear that you and your family feel and want you to know that we are thinking and praying for you. Please feel free to call or email us with any questions that you have or even if you just want to vent about this extremely difficult situation. Elijah finished treatment about 8 monthes ago after 3 1/2 very hard years, but there is joy and there will be a light at the end of the tunnel. Please contact us and we can talk through what we went through together. levihancock1976@gmail.com is our email and you can call us at 515-419-7822. Again our thoughts and prayers are with you.
I just cry as I read this. I am so glad you are recording this so you will remember and so we all know how you feel. I love you.
This post (and the one before it) left me in tears. He is such a strong little guy. And you are an amazing mom... Even though I've only known you for less than a year, I look up to you so much.
Thanks for keeping us updated, as sad as the updates are. I'm keeping you in my thoughts and prayers ♥
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