Home Sweet Home.
After ten days of pretty much zero sleep for this mama, I am currently in my very own bed! Not to mention how amazing it felt to squeeze my Jacee!!!
After her surgery when the surgeon told us they removed a foot of her colon and that it was coiled up like a snake inside her, I almost felt a sense of relief. For years I have known there was more to it when I was told she was withholding or that it was just this or that or just her not listening to her body. To know that having this surgery was needed and to know all this time there was a real reason gave me a deep sigh of relief that I wasn't crazy.
With this sweet little girl I never know what each day may bring. We had many times of struggles there but times of laughter too. Times I had to really call on my strength when all I wanted to do was cry. I found myself praying through a lot of moments: times of fear, times of weakness, time of loneliness.
Monday we did our first Malone flush together out of the hospital. They had been very painful previously and docs kept changing the recipe around. Right after we started, she began crying in pain. Horrible pain. An hour into it she began looking pale, started having extreme chills when she is always hot, and then began to vomit. I thought she was about to pass out. I immediately stopped the IV. She was crying and scared, I had already been fighting the tears for an hour as I just wanted to take away the hurt. I was so heartbroken, scared, alone, nervous.
I began to clean up and she saw I was crying and asked if I was.
Funny how we think as parents we are supposed to teach our children about life. But somehow they teach us. The lessons that come along for the ride with them change us. Their spirits, their smiles, their strength, their bravery, their constant love and their willing to believe.
We still have some work to do. I am still working with her two doctors on the right recipe for her Malone. I understand now that her colon may never work on her own; she may always have to force it. But, this surgery is still a step forward for her. I felt so much more confident this morning after her team stopped by again & one of her docs went over so many different scenarios with me on what to do or change. Not to mention, that I was given an e-mail address that the top 2 docs of this program monitor & respond. So any questions or issues we may have, gets to be taken to the top dogs! Have I mentioned that one of the nurses told me that they now have all fifty states covered for patients traveling just for this incredible team & also a handful of different countries. They are so extremely passionate about what they do & for these kids to live normal lives or as close to normal as they can.
As her mama, I will stay strong for her, be her biggest cheerleader, her best friend, her rock... In that moment the other night where she said those sweet little words to me is a moment I will always treasure.
After ten days of pretty much zero sleep for this mama, I am currently in my very own bed! Not to mention how amazing it felt to squeeze my Jacee!!!
To not say we have been on a roller coaster ride would be anything short of a lie. As most recovery cases are. Her little body likes to throw curve balls often, right at the moment you think you might hit it out of the park!
After her surgery when the surgeon told us they removed a foot of her colon and that it was coiled up like a snake inside her, I almost felt a sense of relief. For years I have known there was more to it when I was told she was withholding or that it was just this or that or just her not listening to her body. To know that having this surgery was needed and to know all this time there was a real reason gave me a deep sigh of relief that I wasn't crazy.
Today, during my last conversation with one of the surgeons, I learned her case of her colon & what it was doing puts her in the top 1-2% of worst cases. Didn't I tell you all last week that my bear believes it "Go big or go home." She never takes the easy way or the normal way!
With this sweet little girl I never know what each day may bring. We had many times of struggles there but times of laughter too. Times I had to really call on my strength when all I wanted to do was cry. I found myself praying through a lot of moments: times of fear, times of weakness, time of loneliness.
Monday we did our first Malone flush together out of the hospital. They had been very painful previously and docs kept changing the recipe around. Right after we started, she began crying in pain. Horrible pain. An hour into it she began looking pale, started having extreme chills when she is always hot, and then began to vomit. I thought she was about to pass out. I immediately stopped the IV. She was crying and scared, I had already been fighting the tears for an hour as I just wanted to take away the hurt. I was so heartbroken, scared, alone, nervous.
I began to clean up and she saw I was crying and asked if I was.
"Yes, I am Laynee. You have no idea how sad my heart is to see you like this. I wish I could take your place and take the hurt from you. But I can't. All I can do is stay strong by your side. We can and will get through this but you can't get weak on me now. We have to stay strong together and keep fighting and have faith it will get better."
She cried listening to me talk and as I went back to cleaning the bathroom, through her giant tears and sweet little voice she said:
"I'm so glad you're my mommy."
I lost it. Thank you God for blessing me with this sweet little girl who is so brave and courageous. One who keeps fighting and inspires me. I have been taught many lessons in patience with her and her body, which isn't my strongest characteristic. I have been pushed out of my comfort zone with her. Been given the strength to know to keep fighting when you get all the wrong answers because mamas know best. To trust the doctors we have been led to and believe the timing was perfect. I have learned to never give up even when you reach many dead ends.
Funny how we think as parents we are supposed to teach our children about life. But somehow they teach us. The lessons that come along for the ride with them change us. Their spirits, their smiles, their strength, their bravery, their constant love and their willing to believe.
We still have some work to do. I am still working with her two doctors on the right recipe for her Malone. I understand now that her colon may never work on her own; she may always have to force it. But, this surgery is still a step forward for her. I felt so much more confident this morning after her team stopped by again & one of her docs went over so many different scenarios with me on what to do or change. Not to mention, that I was given an e-mail address that the top 2 docs of this program monitor & respond. So any questions or issues we may have, gets to be taken to the top dogs! Have I mentioned that one of the nurses told me that they now have all fifty states covered for patients traveling just for this incredible team & also a handful of different countries. They are so extremely passionate about what they do & for these kids to live normal lives or as close to normal as they can.
In the next four weeks, we will spend about three hours a day in the process of her daily medicine. When we return in four weeks, we get to drop it to once a day & split that time in half. No doubt that this will take some adjustment; getting used to our new normal.
However, can I tell you how amazing this child is?? She is so incredibly independent and hands on with her medical "stuff" and always has been. From the start of learning her Malone, I have made it a TEAM effort, not a mom effort. She is already hooking herself up on her own & wants to be involved in all the prep. For a few days, I felt her spirits were maybe down as she was learning her new normal & I know she had been self-conscious of the appearance of it for the next four weeks (not understanding that soon it won't be visible) & was struggling as we made adjustments so to suddenly see her reaching out & wanting to be a part of the team made me so proud!
Together, with her amazing docs we will find the perfect recipe for her! The entire staff at Nationwide Children's Hospital is amazing!!
As her mama, I will stay strong for her, be her biggest cheerleader, her best friend, her rock... In that moment the other night where she said those sweet little words to me is a moment I will always treasure.
So even on those days we might take a step backwards, we think it is a great day. No matter what, we are not at the beginning and we are not at a dead end. Progress is a blessing, no matter how big or small.
Until Next Time
*krisha*
Thank you for sharing your journey with Laynee so articulately! You are one amazing woman, mom, runner, friend! Your passion for life, happiness, and caring for your children is a testament to every one of us to find joy in each new day. May blessings find you today and every day.
ReplyDeleteAmen! and Amen!
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