A few warnings before you read this...
First this may end up being super long...just so you know...I actually wrote down stuff this week as it was happening...normally I forget it but this week there were too many things that I didn't want to forget...
Second there will be some swearing in this...for those of you who think I would never even think of of those types of words well I bursting your bubble because sometimes nothing else really fits the situation...I know I know a lot of other words being a writer and all but sometimes you hit that mixture of pain/frustration/whatever else and no other words really work for that...so out comes a swear word...but I am getting ahead of myself a bit with that...
To start this off and set the mood if you will I want to share two of my favorite verses with you...Psalm 27:13&14 "I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."(NIV)...these verses are one of the many verse written on my walls as a reminder that I consistently need...often I get bogged down in the grim and heartache of the everyday...I get caught up in the sorrow of the night now and forget that joy comes in the morning...also I am not a patient person so I often need to be reminded to wait...but I need promises like this one that I will still see the goodness of the Lord in the land of the living...though I do long for heaven that doesn't mean good things won't happen here on Earth...
With that being said I want to share with you some of the ways I have seen Gods goodness in my life this week...
Monday we started using my fistula and I was really nervous...like super nervous...I didn't know if it was going to work since I am so little and I was told by the nurse I work with the most that it was a fragile little thing...but when Becky (another nurse I now work with too) got here and was feeling it she thought it was great...and then when she stuck it she kept telling me and mom that it was working great and she could tell I exercised it a lot...we got to the highest speed we could on that needle in the first day which doesn't usually happen...what a relief...then mom and I went and saw the Hunger Games...we had both read the book and I thought they did a pretty good job...sure they left some stuff and changed some things around but as I told mom if they did everything exactly as the book has it the movie would be like 15 hours long...after that I went and saw the GI doctor...he said the CAT scan showed that the mass in my stomach extended down into the small intestine a little...I see a surgeon in town with week for that to see what he says...if he thinks operating on it would be a good idea we are going to try to work it out where I can go to Peoria at OSF for that since we are comfortable there and that's where we do everything else...besides that he didn't have much to say so that's good...and because I am nerdy Monday was also good because a new BONES was on and Bones had her baby...that was a great ending to my day...
Tuesday I wasn't really nervous anymore but momma was because it was her first day sticking me...the first one she got under the skin but then was having a little trouble so Becky took over to finish it up and she had to barely move it to hit the fistula...then mom got the second needle in with no problems...Becky said that normally take people forever to do or they have what is called infiltration when they do it...what that means is that the needle went through the other side of the fistula and is no longer in it...she said it hurts really bad...sort of like having a vein blow in your arm...and I have felt that before so I am in no rush to have that happen...anywho mom got them is no problems and I ran great again...and one of our family friends Jenna stopped by to see me and mom and then my friend Katie Jo came over so we could catch up while she was on spring break...before that though we got some great news that made my doctor dance and me and mom dance at the store...we were getting a few things and I got a call from Kathy which I knew was coming because I had just had my hemoglobin drawn the day before...she called and was super happy which doesn't happen often...not because she isn't a nice person...she is...but usually she has bad news for me and she gets bummed about that for me...anyways she said my hemoglobin went up on its own for the first time in a long time...the week before it was 7.4 but this week it was 8.1...usually it's only in the 8 range right after I get a transfusion...we aren't sure if that is from my medicine or what...but what it does mean is that I will make it to six weeks since my last transfusion and be able to send in some blood to test against my cousin Randy...six weeks is Tuesday and we are sending in some blood on Wednesday...we are super stoked...I haven't been able to test against anyone since like September...so this is a big dang deal...oh and then that night mom and I got dessert from Arthur's served to us from the love of my life Nicole...I was so glad I was able to see her in person that day...
Wednesday was an off day so I didn't have to deal with dialysis which was nice...that day was great because mom made me a mac and cheese pie...it's mac and cheese in a pie crust and it may be the most delicious thing I have ever eaten...and then my brother Mini and my friend Sydney Dewey came over so that was great to be able to see them...
Thursday was a dialysis day...this day and Tuesday Becky only stayed for a little bit at the beginning to make sure mom could get the needles in good and then that the pressures were good then she would leave knowing that mom could get the needles out on her own...now I won't lie this was a tough day...even though I have this numbing cream to put on my arm the needles still hurt a lot when they go in...and mom was having a hard time with the fact that she has to poke her daughter with these fatty needles...and I think that was the day we went up a needle size which also usually takes people a couple weeks to be able to do...soon after Becky left mom went downstairs and cried and I cried in my room...its funny that we know the other one is going to cry but we don't want to cry in front of the other because we don't want the other to feel bad...anyways the needles also hurt when they are coming out...especially the one that is close to my scar...not sure why but it hurts reals bad...then I have to apply a lot of pressure to the sites so that they don't bleed like crazy...anywho mom had me unattached to the machine and had pulled out the first needle which wasn't to bad...then when she pulled out the second one I said "hot shit"...now I didn't mean to say it out loud...and I don't know why I feel the need to put the word hot in front of everything but this happened...and mom and I died laughing...she also said something to me about how I learned that from my grandma since my grandma swears and when we were little mom was afraid our first word would be a swear word because of GG...so I guess that one was for her...the thing is that usually that stuff is just going on in my head...like when the needles go in sometimes I am thinking "shit that shit hurts" cause it's painful and I want to lash out about it or say something to express that but at the same time I don't want to upset mom by giving away how much it hurts...so that's something I am still learning to deal with...that whole deal made us laugh though and whenever we tell anyone they all laugh too...then later that night Mini came over again and brought Patrick with him so that was pretty fun...
Friday was a good day too...mom got the needles in my fistula with no problems and even had Becky go in a different room to see if she could do it without her...that day there were no slips of swear words either because I got distracted from the pain briefly because there was a cardinal right outside my window and I think they are so pretty...then daddy took us to Salamandra's for lunch and I got to see my brother Cesar...and enjoy some great food...after that we went to Walmart and got my graduation gift...my new bike...it still need a basket but it is pretty cool...it's a retro looking cruiser and I love it...we rode our bike around a little and I was having such a blast...then when we got home I had mail from Carole Jeske and Lauren Peters that cracked me up so much...
Then yesterday dialysis went great...mom is a pro...and in a week we might be able to move up to the biggest needle size after only using my fistula for 2 weeks...so all those weird hand/arm workouts I did paid off...and dad took our bikes up to the bike trail so that he, mom, Jenna, and I could go on a bike ride...so fun...and I went the farthest on the bike ride I have gone in a long time...so that felt great...and daddy put up a new shelf in my room which I am totally stoked about...then we went out to the Kerr house for super and I helped papa make some ravioli and then later did some singing with Mini...I loved being able to see them too cause I used to go out to their house like once a week...but haven't been out their much since I got super sick...
Then today...obviously the best day ever because today means that my redeemer lives...and it means that I get to watch my nephews hunt for eggs...also we go out to my aunt Frannie and uncle Rich's house to eat tons of food...about as much as we eat at Thanksgiving...and fly kites...my kite today was sort of a trick kite and just as I was learning some things to do to make it do loops in the air the string broke...which stinks but it was still nice out and I got my kite back so I can try again next year...
So I say all of this mostly to say that when I look for it I can see the goodness of the Lord in the land of the living...I can see how he richly blesses me with somethings working out and with great people around me...this week was filled with some many good things and good days that even though I don't know what the future holds for once its not as scary as it has been to me...and I would say that's a pretty great thin...and when I look at things in a positive light I am able to see how God is doing a good work in me...I am able to see the promises in Isaiah 61:2b&3 in my life when he says "to comfort all who mourn; to grant those who mourn in Zion- to give them a beautiful headdress instead of ashes, the oil of gladness instead of mourning, the garment of praise instead of a faint spirit; that they may be called oaks of righteousness, the planting of the Lord, that he may be glorified." (ESV)
Second there will be some swearing in this...for those of you who think I would never even think of of those types of words well I bursting your bubble because sometimes nothing else really fits the situation...I know I know a lot of other words being a writer and all but sometimes you hit that mixture of pain/frustration/whatever else and no other words really work for that...so out comes a swear word...but I am getting ahead of myself a bit with that...
To start this off and set the mood if you will I want to share two of my favorite verses with you...Psalm 27:13&14 "I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."(NIV)...these verses are one of the many verse written on my walls as a reminder that I consistently need...often I get bogged down in the grim and heartache of the everyday...I get caught up in the sorrow of the night now and forget that joy comes in the morning...also I am not a patient person so I often need to be reminded to wait...but I need promises like this one that I will still see the goodness of the Lord in the land of the living...though I do long for heaven that doesn't mean good things won't happen here on Earth...
With that being said I want to share with you some of the ways I have seen Gods goodness in my life this week...
Monday we started using my fistula and I was really nervous...like super nervous...I didn't know if it was going to work since I am so little and I was told by the nurse I work with the most that it was a fragile little thing...but when Becky (another nurse I now work with too) got here and was feeling it she thought it was great...and then when she stuck it she kept telling me and mom that it was working great and she could tell I exercised it a lot...we got to the highest speed we could on that needle in the first day which doesn't usually happen...what a relief...then mom and I went and saw the Hunger Games...we had both read the book and I thought they did a pretty good job...sure they left some stuff and changed some things around but as I told mom if they did everything exactly as the book has it the movie would be like 15 hours long...after that I went and saw the GI doctor...he said the CAT scan showed that the mass in my stomach extended down into the small intestine a little...I see a surgeon in town with week for that to see what he says...if he thinks operating on it would be a good idea we are going to try to work it out where I can go to Peoria at OSF for that since we are comfortable there and that's where we do everything else...besides that he didn't have much to say so that's good...and because I am nerdy Monday was also good because a new BONES was on and Bones had her baby...that was a great ending to my day...
Tuesday I wasn't really nervous anymore but momma was because it was her first day sticking me...the first one she got under the skin but then was having a little trouble so Becky took over to finish it up and she had to barely move it to hit the fistula...then mom got the second needle in with no problems...Becky said that normally take people forever to do or they have what is called infiltration when they do it...what that means is that the needle went through the other side of the fistula and is no longer in it...she said it hurts really bad...sort of like having a vein blow in your arm...and I have felt that before so I am in no rush to have that happen...anywho mom got them is no problems and I ran great again...and one of our family friends Jenna stopped by to see me and mom and then my friend Katie Jo came over so we could catch up while she was on spring break...before that though we got some great news that made my doctor dance and me and mom dance at the store...we were getting a few things and I got a call from Kathy which I knew was coming because I had just had my hemoglobin drawn the day before...she called and was super happy which doesn't happen often...not because she isn't a nice person...she is...but usually she has bad news for me and she gets bummed about that for me...anyways she said my hemoglobin went up on its own for the first time in a long time...the week before it was 7.4 but this week it was 8.1...usually it's only in the 8 range right after I get a transfusion...we aren't sure if that is from my medicine or what...but what it does mean is that I will make it to six weeks since my last transfusion and be able to send in some blood to test against my cousin Randy...six weeks is Tuesday and we are sending in some blood on Wednesday...we are super stoked...I haven't been able to test against anyone since like September...so this is a big dang deal...oh and then that night mom and I got dessert from Arthur's served to us from the love of my life Nicole...I was so glad I was able to see her in person that day...
Wednesday was an off day so I didn't have to deal with dialysis which was nice...that day was great because mom made me a mac and cheese pie...it's mac and cheese in a pie crust and it may be the most delicious thing I have ever eaten...and then my brother Mini and my friend Sydney Dewey came over so that was great to be able to see them...
Thursday was a dialysis day...this day and Tuesday Becky only stayed for a little bit at the beginning to make sure mom could get the needles in good and then that the pressures were good then she would leave knowing that mom could get the needles out on her own...now I won't lie this was a tough day...even though I have this numbing cream to put on my arm the needles still hurt a lot when they go in...and mom was having a hard time with the fact that she has to poke her daughter with these fatty needles...and I think that was the day we went up a needle size which also usually takes people a couple weeks to be able to do...soon after Becky left mom went downstairs and cried and I cried in my room...its funny that we know the other one is going to cry but we don't want to cry in front of the other because we don't want the other to feel bad...anyways the needles also hurt when they are coming out...especially the one that is close to my scar...not sure why but it hurts reals bad...then I have to apply a lot of pressure to the sites so that they don't bleed like crazy...anywho mom had me unattached to the machine and had pulled out the first needle which wasn't to bad...then when she pulled out the second one I said "hot shit"...now I didn't mean to say it out loud...and I don't know why I feel the need to put the word hot in front of everything but this happened...and mom and I died laughing...she also said something to me about how I learned that from my grandma since my grandma swears and when we were little mom was afraid our first word would be a swear word because of GG...so I guess that one was for her...the thing is that usually that stuff is just going on in my head...like when the needles go in sometimes I am thinking "shit that shit hurts" cause it's painful and I want to lash out about it or say something to express that but at the same time I don't want to upset mom by giving away how much it hurts...so that's something I am still learning to deal with...that whole deal made us laugh though and whenever we tell anyone they all laugh too...then later that night Mini came over again and brought Patrick with him so that was pretty fun...
Friday was a good day too...mom got the needles in my fistula with no problems and even had Becky go in a different room to see if she could do it without her...that day there were no slips of swear words either because I got distracted from the pain briefly because there was a cardinal right outside my window and I think they are so pretty...then daddy took us to Salamandra's for lunch and I got to see my brother Cesar...and enjoy some great food...after that we went to Walmart and got my graduation gift...my new bike...it still need a basket but it is pretty cool...it's a retro looking cruiser and I love it...we rode our bike around a little and I was having such a blast...then when we got home I had mail from Carole Jeske and Lauren Peters that cracked me up so much...
Then yesterday dialysis went great...mom is a pro...and in a week we might be able to move up to the biggest needle size after only using my fistula for 2 weeks...so all those weird hand/arm workouts I did paid off...and dad took our bikes up to the bike trail so that he, mom, Jenna, and I could go on a bike ride...so fun...and I went the farthest on the bike ride I have gone in a long time...so that felt great...and daddy put up a new shelf in my room which I am totally stoked about...then we went out to the Kerr house for super and I helped papa make some ravioli and then later did some singing with Mini...I loved being able to see them too cause I used to go out to their house like once a week...but haven't been out their much since I got super sick...
Then today...obviously the best day ever because today means that my redeemer lives...and it means that I get to watch my nephews hunt for eggs...also we go out to my aunt Frannie and uncle Rich's house to eat tons of food...about as much as we eat at Thanksgiving...and fly kites...my kite today was sort of a trick kite and just as I was learning some things to do to make it do loops in the air the string broke...which stinks but it was still nice out and I got my kite back so I can try again next year...
So I say all of this mostly to say that when I look for it I can see the goodness of the Lord in the land of the living...I can see how he richly blesses me with somethings working out and with great people around me...this week was filled with some many good things and good days that even though I don't know what the future holds for once its not as scary as it has been to me...and I would say that's a pretty great thin...and when I look at things in a positive light I am able to see how God is doing a good work in me...I am able to see the promises in Isaiah 61:2b&3 in my life when he says "to comfort all who mourn; to grant those who mourn in Zion- to give them a beautiful headdress instead of ashes, the oil of gladness instead of mourning, the garment of praise instead of a faint spirit; that they may be called oaks of righteousness, the planting of the Lord, that he may be glorified." (ESV)
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