Lillian is sick of being sick. She's hungry enough to ask for food only to have one bite before the nausea sets in. She's bored enough to want to play only to need a rest 5 minutes later. How can a 2 year old be content to lay around watching cartoons all day? How can anyone thrive on a few bites of pancake? I can see her tolerance wearing thin.I am sick of watching her feel sick. It's agonizing to watch your child feel lousy and not be able to fix it. I know the light at the end of the tunnel is growing brighter but this last half seems to be moving in slow motion. What I wouldn't give for one day in the midst of this with the old Lillian.
We recently met a family with a 3 year old newly diagnosed with Leukemia. They have 2 other kids at home and 3 1/2 years of chemotherapy ahead of them. It brought a new perspective to our battle. Here are a few thoughts that have been filling my head since meeting this family:
I am thankful:
- Lillian likely won't remember any of this.
- She isn't missing any school.
- The treatment is only 6 months long.
- My amazing company and generous manager granted me this time with Lillian.
- Jeff and I only have Lillian to focus on right now.
- For the Barney song that allows me to steal a hug and a kiss everytime we hear/sing it.
I miss:
- Watching my little girl play with other kids.
- Trying to keep up with her as she runs around the park.
- Eating at a restaurant. (It's not due to a lack of invitations, thank you all.)
- Work - my wonderful teammates and flexing my mental muscle
- Innocence - not knowing how to give a shot or flush a line or how to pronounce medulloblastoma
But mostly my mind is filled with what time she needs her next dose of magnesium and whether to call the doctor about her diarrhea. And always the nagging worry of recurrence or worse. Pray that this treatment does the trick and our little girl grows into the beautiful woman God created her to be.
21 comments:
Lori,
I cannot begin to know the way you must feel on most days. What I do know is that you and Jeff are giving Lilly the gift of parents that love her and give her unconditional support no matter how stuff the going gets.
It does always seem in this life that we often meet someone who has it much tougher then we do. This however does not mean that you cannot at times just get too tired and a little discouraged.
I will give thanks for the things you mentioned as blessings and will pray for the things that seem difficult.
You, Jeff and Lillan have given us all a wonderful lesson in perseverence, faith and love.
Liz G.
I can certainly understand your "Sick of being sick" comment. We can't begin to know what you have all been through. Here's my suggestion: Go into your garage and scream and throw things for a few minutes (make sure you don't dent the car or yourself)! Let off some steam. Then come back in and give Lillian and Jeff a big hug. After that, it is Jeff's turn!
Knowing that Lillian probably won't remember any of this is truly a blessing. Lillian is also blessed to have both of you. We all wish we could wave a majic wand and bring Lillian back to perfect health. This will happen, we all just have to wait a little longer.
Paula
Oops! I didn't spell magic right. Oh well, another senior moment strikes!
Paula
Lori,
Your comments have touched me greatly. I truly have no words to say to you but I will continue to care for the three of you and pray for all of your family.
Mary Ann C
God bless you for all you've been through and continue to bless you through all that is yet to come.
Joey
Lori,
I hope you know what an ispiration you guys are to us. Your love for Lillian and each other make us want to be better parents and spouses. Know that we are praying for you every day-especially that God will bless your perfect family and that we will all be able to see Lillian grow up to be the woman God wants her to be.
Love,
Jenn
Lori,
Another blog from you, and can you feel my tears? I'm so very sorry that you (and friends) have all lost our innocence of a care free, happy day way of living...I pray that yours will return to you soon.
Lillian has been a lucky girl ever since the day she came to you...there must have been a plan that this little wonder needed the most caring and devoted parents of all...and so she's sent to you!! With perfect love you're hanging in there. Thinking of you daily, Claudia
Lori, Jeff and Lillian, I hope you can feel all the love coming your way and let it help get you through these hard times. --Love, Mom
Lori, Jeff, and Lillian, I am so sorry for everything you all have been through and all you have yet to over come. Somedays I feel like I am to blame and wish I could take the pain away from all of you. Things must happen for a reason though because why else would such a scary horrible thing be happening to honestly and truely the most loving, caring, and beautiful family inside and out. We love you all and things WILL get better I just know it. Maura, Chad, and Bryson
Oh, I can only imagine how hard this is for all of you. You have been so strong and continue to tirelessly devote every ounce of energy to that beautiful little girl. It's ok to get tired...it's probably time to just let it hit a little. Admitting how truly hard this is and has been will let some of it go instead of holding it inside. By letting some go, maybe it will allow you to rejuvenate just a little to finish this ordeal stronger and with a clear head. You have a lot of people who love and support you, just know we are all praying daily for strength, wisdom and health for you all.
We are all so ready to see you, to give big hugs and to go for a carefree walk on the beach...very soon!
Give that little sweetie a big, gentle hug from her cousins, auntie and uncle...love, Traci
Thank you for the new picture of Miss Lillian! Seeing her smile always lifts my spirits. Just know that however tired or frustrated you get, you and Jeff are doing a phenomenal job caring for Lillian and you have infinite love and support spanning multiple cities and states. Here's to the light at the end of the tunnel getting brighter every day and getting your legs ready to chase her around the park. Love Michelle
Lori,
I am at a loss for words and can't even begin to imagine what you are going through. I love to see the pics of Lillian though and can still see that beautiful spirit in her eyes. I think of you all often and you are always in my prayers!
Much love.
Amber
Lori & Jeff,
Your note was truly inspirational. I'm glad that we've been able to help just a bit. Hang in there. please let we know what we can do to help.
John E
Hi Lori --
What I miss -- the chat time in your office; opining on some work thing; snacking on chocolate around 11 am... then at 1:30...and 2:00 and 2:05 and...; Project Runway updates/gossip; your smile;
What amazes and inspires me -- Lillian's smile and pictures; your faith and openness; how the way of the world brought you and Lillian together; the strength and power of prayer
Lori, Jeff and Lillan
Your family is really unbelievable. You can feel your spirit and family love. Thank you for including everyone during your journey. Please know we are thinking of you and praying for Lillan's health. While we try to give you your space, please let us know if you ever need anything.
Jeff, Barb, AJ, Michael, Ben and Hunter (yes, a dog)
Lori....
The light from the end of the tunnel is shining on Lilly in that darling picture of her.
The journal you've been sharing with all of us regarding your feelings after being blasted into the unknown is so magnificently honest that it reaches in and grabs my heart every time. Thank you for the privilege of being able to share your struggles and wonderful faith. Bless your hearts. Kathy H.
Hi Lori -- your blog stayed with me all day/night... you are all in my prayers...
It is comforting that Lillian most likely won't remember all the details. But the power of your/Jeff's love and support shapes her everyday -- and she'll always carry that with her -- in everything she is and becomes.
She a VERY LOVED girl -- full of potential, great spirit and amazing powers of healing!
We're with and here for you!
Sue
Lori --
What can I say other than you and Jeff are amazing parents and Lillian is so lucky to have the two of you. You all in my thoughts and prayers on a daily basis. And like you said, it's only 6 months and you're almost done. God is in control, He may not be revealing it now but there is an amazing journey ahead of Lillian and she's going to be great!
Erin McK.
Lori and Jeff,
We continue to pray for you and Lillian every day. Although I know this is the most difficult time in your lives, it's encouraging to read of your thankfulness for the small things. Thank you for your willingness to share your pain and joy with us.
Lots of hugs and kisses,
Jennie, David and Kate
Lori,
Thank you for sharing such an intensely personal experience with us. Lillian is truly blessed to have parents such as you and Jeff; and you and Jeff are blessed to have her.
I have been a quiet participant, reading your comments with tears and laughter. Thank you for reminding us all about what is important. As Lillian grows into the woman that you know she will be, my wish is that you look back on this period of your lives and remember the good, the small moments of joy and the smiles. Your family is an inspiration. My prayers and thoughts are with you daily.
Barbe
Lori, you and your family are an inspiration. My thoughts and prayers are with you all.
-Sara Scott
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