Thursday, July 29, 2010


I keep myself pretty busy.  Being a mom to an energetic four year old does that to you.  We are usually out running around doing something.  Playing with friends here, visiting friends there, out to lunch with Nana, doctors appointments, grocery runs, and even more play dates. When it's time for "L" to take her nap I almost always force myself to lay down and conserve some of my spoons (energy) for the afternoon hours. I usually spend the time reading.  Sometimes it's a good book and other times I am reading my fellow chronically ill (but not down for the count!!) blogger's posts. It's amazing how good it can feel to know that others are on the same crazy ride in life you are on. It helps me stay up beat about my own personal roller coaster ride. 

In June I had blogged about my constant mental and emotional fight I have going on, in my post When Life Hands You Lemons.  I see the classic angel and devil on the shoulders gag, in my head...

The devil is saying, " You should be doing so much more for your daughter than what you do. You are a bad mom. Get out of bed you lazy head and do something great with her!" *While he waves his pitchfork wildly*  

The angel is on my other shoulder is saying, "You do so much more than many kids get to experience.  You are a good Mom and use up more then enough energy on being a good Mom every day!" *While he angelically strums his harp*

It's a barrage of self doubt warring with remembered encouragement from friends and family. It's easy to tell someone to take it easy.  It's incredibly hard to actually do so. In the back of my mind I always wonder if there is more I could be doing that I am not because of my health.  And yet I have it so easy compared to some Moms and what they battle to do for their children on a daily basis. 

What does my personal conflict have to do with the blogs I read on a daily basis?  I'll tell you...One of my favorite blogs had a guest writer yesterday.  Ordinarily I would read it, either enjoy or dislike it, and move on. Not this time... This was written by a remarkable 10 year old named Hannah. She has the concern and privilege of growing up with a Chronically ill Mom. Hannah's insight into being a child who has a sick mom was amazing to read.  It truly touched me and made me realize that even in the worst of times, with my health, that I may not be failing her at all. I may in fact be raising her to be an empathetic, understanding, amazing young lady (like this writer), because of the journey my daughter will take with me.

So with out further introduction...Oh before you read, you most definitely should find yourself some tissues!!...I give you...

The original blog post can be found here.

My World with a mother who has lupus
Hi My Name is Hannah Patricia Jones ,
I am 8 years old and I have a lot of love in my heart because I have a mom that is sick with Lupus and some other Illness , I am sure if my mom did not have lupus I would still have a lot of love in my heart anyway because I am a child of god and my mom has taught me that no matter what comes in life to always hold onto your faith.
I do not know what it would be like to have a mommy who is healthy and I would love to see her get well soon and I pray a lot for that to happen , but there is no cure for what my mom has right now and it really makes me sad and unhappy at times.
I worry all the time that when my mommy goes into the hospital that she may never come home to me and my baby sister Gabbriella , I worry that when she wakes up she is going to be in so much pain and I have to help her the best way I can.
I worry that if I catch a cold in school and get sick that my mom is going to catch it and it could hurt her so much , I worry that me and my sister may loose my mom to lupus anytime or any day.
My mom says I have too many worries for such a young child and it breaks her heart , sometimes we cry together and just hold each other and make it all better, I wish that I could kiss my mommy and make it all better like when I am hurt or sick she kisses me and makes me feel warm and happy inside , you see she makes it all better and never gives up on us ever.
My mom is a great educator , she includes me in on so much and it helps me in some ways but scares me in others.
Her lessons on lupus can be frightening but she is very honest with me about how she feels and when it is a good day or a bad day , and what Lupus is.
I have a Nona and Pap Pap that are always here in our home starting in the morning after my daddy leaves for work that help my mom , but sometimes I have to be the big sister and take care of Gabbriella because mommy is just not strong enough to lift her and play with her the way my sister wants to be played with.
I never mind doing this because this is how my life is with having a sick mommy.
I have met a great pal named Kimberly and she has a blog and it has helped me and my mommy so much because we read things about lupus that make us laugh and not cry , we talk about the lessons we learn from her blog , you see my pal Kim has Lupus too.
My mom is in a group a few of them and it helps her get through the days and nights when she is not able to sleep at all , and I have learned that their are other Mommy's just like my mom and they probably have the same feelings that my mom has and this helps her so much , and it helps me to know that I am not alone and my mom is just like the other moms , she is sick but full of love, so you see my mom is like the other moms , but she is just like the other sick mommy's.
We can not go out in the hot sun and we have to take breaks through the day and I am OK with all of this because I love my mom forever.
My mom is a fun mom even though she is sick , we do arts and crafts and we read books and snuggle and we eat lots of yummy treats too and watch a lot of great movies and cartoons.
My mom loves me and my sister very much and though she is not in my school as a PTA mom or a basketball coach for my team she makes up for it in so many different ways , I have learned to love books and I am a wizard on the computer and I am always making something or drawing something and learning something new everyday.
My mom is a great teacher. That is what I want to grow up to be.
I love to play on my wii game system and I love playing with my baby dolls and my doll house , my imagination is very large because I am not outside all the time and running around the park like other kids my age , but it does not bother me , you see my mom is sick and this is all I know and it is not sad for me because my life is a good life , but I still wish my mom was all better , it would be nice to see her as the well Mommy's.
I have gotten involved in raising money for the LFA and the Butterfly Gala in New York in September , I did a walk in my neighborhood and raised money , and my mommy and I made $5.00 donation butterfly pins to give out to the big donors.
I have raised $75.00 on my walk and have gotten people to donate on Kim's blog for the education and awareness of Lupus and most important to help find a cure.
Reading Kim's blog made me want to donate my earnings I get for helping in the house and that is how this all became a big wish for me , to help other sick Mommy's and even daddy's that have this illness.
I am having a lemon-aid stand this weekend and it is called Lemon-aid for lupus , I want to keep raising money , I want Kim to go to the gala in a beautiful purple gown and have her represent all of the people sick with my moms illness.
I want more people to know that lupus is real and that it does not always have a happy ending and that more people need to know this.
I am a fighter just like my mom , you see I have aspergers syndrome it is called by my mom little professors syndrome because I am very smart and witty aspergers is a form of autism and you know what ? my mom found this out about me when I was 3 years old and right away started getting me all the help I needed so that I can be the smart little person I am today. My Mom is a fighter.
My mom never gave up on me and I will never give up on my mom ever.
Lupus does a lot of things to families , it can break them apart and cause fights , it can break a spirit and cause tears , it can break your heart and that can happen at anytime.
My family has been through a lot with my mom being sick , my mom says she will never ever apologize for being sick to an adult , because adults should know better , but she is always apologizing to me and my sister and I just want to say it is OK mom and we love you just the way god made you.
I don't need to go outside everyday and I don't need my mom to chase me in the yard or to play basketball with me to show me she loves me , cause I just know she does no matter what.
My mom and dad took us to Disney World in April , it was so hard on her but she did it and we had such a great time , it took a lot of spoons out of her , and the spoons are what we use in our home as helpers to see how mom is doing through the day , right now she is helping me write this and she is using a spoon , and she only wakes up with 12 spoons a day and has to use them very wisely you see , so Disney was a boat load of spoons and my mommy gave them all away for me and my sister , on the 4th of July my mommy took us to Kennywood Amusement Park and got very sick from doing that , she was up all night and still made sure we went to Kennywood , we stayed from open until close and my mommy was sick for a week after just one day with us out in the sun and walking around the whole day through.
These are things that show me that my mom loves me and my sister no matter what , she sacrifices herself for our happiness when she could just have stayed home and we could have done sparklers , NO my mom took us to Celebrate America at Kennywood and she did it out of unconditional love.
These are just a few reasons why I love my mom so much and how life is when you have a mommy sick with lupus , I don't know if this will help another kid like me , but I sure hope it does.
I would not trade my life for any other life because I love who I am because I love my Mom and because my mom made me who I am today.
I will be going into 3rd grade this year and I will not have my mom as a classroom mom , but what I will have is a note tucked into my lunchbox that says I love you Hannah have a great day mommy misses you , and that is enough for me.
If anyone ever has any questions in there minds about someone with lupus , they need to know that Love , Faith and Hope are what makes a person with lupus keep on being the great person they are.
I will keep praying for a cure and I will keep praying for all of you ,I will keep on fighting for you , God is Good that's what my mom teaches me and so I will stop on that note.
This is what it is like to have a mommy so sick and on a ton of medications and that gives herself fully along with her spoons everyday to me and my baby sister Gabbriella , Thank You Kim for listening to me and understanding what it is to be a child with a Mother who has Lupus.

All My Love xoxoxoxo
Hannah Patricia Jones


Anonymous said...

hello this is hannah and I just want you to know that your little girl does love you just the way you are , after all your her mommy and we need our mommy's sick or well ,you are her mommy no matter what and she loves you to the moon and back :)
thank you for spreading my story I hope it helps more people and I am glad it helped you.
have a good night cause your a good mommy love hannah. Faith Love and Hope :)

Blogger Mama said...

Oh, thank you Hannah! Your post was such a blessing to me!