A Better Day and Another Field Trip

Sorry for the pity party yesterday.  After I cried myself to sleep with a near migraine, I woke up feeling a little refreshed this morning.  All day long I have appreciated reading the encouraging comments that you guys left.  Thank you for your compassion.  God has laid it on my heart to change my prayer for this situation.  I'm going to stop praying for Lucy to be "normal" again.  What's normal anyway?  I just want her to be happy.  My prayer now is that God would send her 1, just 1, girl friend who will be true and dear that she will have a meaningful friendship with.  If God blesses her with 2 or 3 or 50 then great!  But 1 would do. We all need a friend to count on, right?

I want to add here that several little girls in Lucy's class have been very sweet to her.  I pray that some friendships will really take off in her class.  She has been treated with kindness and grace by everyone in her class.  I am so proud of the 13 children who take care of her at school.

She does have this one friend who will never, ever forsake her.  I know I am biased because he's my best friend's son but there is something very special about this little boy.  I cried on the phone today with Amanda (his mother) as I told her how grateful I was that he was in our lives.  Hyatt, Lucy's very best friend, is an amazing little boy with the heart of  ten giants.  He loves Lucy and protects her.  He worries about her, but also pushes her to be independent.  There is something about their relationship that I will never be able to explain, maybe because I will never understand it.  I don't guess I really have to, though. Seriously...I LOVE this kid!

This is Hyatt holding the door open for her as she went into lunch.  This was right after he helped her get out of the van and then proceeded to place his hand in the small of her back to make sure she felt stable while she was walking.  A perfect gentleman!

Today I was able to take Lucy on her first official Kindergarten field trip.  We visited the Fire Museum of Memphis and we had a great time.  Being at the museum brought back many bad memories.  I took the girls to a birthday party at the Fire Museum the Saturday before Lucy was diagnosed with cancer.  That day was the day that I first became truly concerned about her vomiting.  Ugh.  I get sick to my stomach even thinking about it.

But today was different.  Today was good.  After the tour was finished I took Lucy and Hyatt to grab some honey chicken from Pei Wei, our favorite lunch spot.  After it was over we decided to grab a couple of yummy Gigi's cupcakes.  Hyatt really wanted to get one to take to his mommy and surprise her at school.  After that I stopped at LeBonheur and donated the remaining boxes of Lucy's extra feeding tube supplies and formulas (praise God we don't need them) and medical supplies from her central line (yes!!!)  Hyatt opted out of a cupcake saying "I'm just not really into cupcakes" so I took him by the frozen yogurt place on the way home.  I'm a pushover I know, but I'd do anything for that little boy.

I'm not sure how kids even eat these concoctions that they make.  This is seriously the most disgusting thing I've ever seen:

Both girls had art lessons this afternoon and now we are starting to wind down for bed.  Sheesh!  I wanted to share this video tonight.  It probably doesn't mean a lot to you, but after the day I had yesterday it brought such joy to my soul to watch Lucy simply enjoying herself today.  She was giggling and truly having fun.

I guess God never lets me wallow in my own despair for too long.  Today was a better day for sure.  All of my children did things that made me very proud today.  Lucy walked all over the museum with her walker without me having to hold her, Jack went to the potty several times today and Ella created this super cute painting.  SPOILER ALERT----this is for her teacher, Ms. Emily.  I am SOOO jealous because I really, really want it for my house!  Isn't it so stinking cute?

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  1. That picture is awesome! What a talented girl you have! Praying that Lucy continues to gain strength and that she makes some quality friendships. I love Hyatt - what a sweetie!!

  2. Hi Kate, I am so glad to hear you are feeling better today. :) I will join my heart with yours for a girl friend for Lucy, someone who she connects with and can grow and become the girl she was meant to be.

    How awesome she does have Hyatt! That surly is a blessing.

    Praying you won't have too many more down nights. You have had more than your fair share already.

    Blessings hon,

  3. What a special friend she has in Hyatt! Glad you are feeling better today, it aways makes you feel a little better to get it off your chest. You are a awesome mom!! :) And from the looks of it you guys have 3 special children that love you very much.I love Pei Wei too! I'm still upset they closed the one in East Memphis by the Racquet Club.

  4. Btw, must be a boy thing! Mine doesn't like Gigi's or Muddy's cupcakes either, he says they have too much icing! I didn't know that was possible, ha!

  5. I am glad that today was a better day! You are always in my prayers! I am sure Hyatt is a sweetheart. His mom is one of the sweetest people on the planet! If Ella decides to market her canvas I want to be the first to buy one. Too cute!

  6. I agree with Lindsey...I want a canvas, too! I think you might just have yourself another good fundraiser. Have Ella auction off some of her artwork for charity. That is serious talent right there!
    Hyatt is a keeper. What a sweet boy.
    Just for the record: I think that Lucy is PERFECTLY normal. ;)

  7. I am very glad today was a much better day. You are such a wonderful mother to your children. I will be praying for God to bless sweet Lucy with friends she can truly count on. Always praying for your family!

  8. Ella did a beautiful job on her painting! I am so grateful that I have the pleasure of working with your precious girls everyday! I am so glad she was able to enjoy her field trip today! She is an inspiration to me!

  9. That is some incredible art work!

  10. Be strong! There are so many of us out here praying for all of you all the time and wrapping you in our love :) You are amazing and your family are all indivuidually awesome xxxxx

  11. Kate, You deserve to have some bad days, I am sure that you have had to be so strong for others for so long that there are days when you need to have a release day. I had to replay that video over more than once, I loved hearing Lucy giggle and Jack saying Momma, Momma. I really loved seeing her in the chair moving her game control up and down several times trying to make her game do something faster than it was.I love videos, the actions and voices are Priceless. Thank you...

  12. Lucy now has a "new norm" to be her meauiring stick. Praying for y'all. Glad yesterday went well.

  13. I just wanted to say I received my new 2013 St Jude calendar this week and Miss June was a beautiful, familiar face! Glad today was better and what a sweet post about such a sweet friend to Lucy.

  14. Why not have prints made of Ella's picture and offer them for sale to those of us who have followed your ups as well as your downs. Then offer them for sale to the general public. I am sure she can produce other notable ones. She does have talent! Just a thought. I'll definitely take one!
    Happy drawing, Ella. Loved this one!

  15. Kate - you are so strong and deserve time to cry. It looks like you all had a fantastic, Fun day. I have you and your Family in my thoughts ~ Bea

  16. Kate
    I wanted to respond to you yesterday but was having trouble finding the words. we have never met, we do have a mutual friend. Sarah Vickers. Per her request, I have been reading your blog ever since Lucy was diagnosed.
    I am an OT and I specialize in stroke and brain injury rehab ( I work with adults mainly)
    I know there are times when this road is frustrating. I know you did not want it or choose it for your family. I thought you were being a little hard on yourself yesterday. Nothing wrong with you forging ahead and experimenting, in the end you recognized the need to pull back and regroup. This is something you will probably and should probably do again.
    Lucy is having to reorganize herself. Her roles have changed so much over her illness. Think about it, going from everything is fine to completely dependent, to somewhat independent, to completely dependent, now back at school trying to figure out where she is with all of this. Put on top of that she is a little kid trying to grow and it just can be too much sometimes.
    Comparing Lucy to how she was before or even wanting that for her is unrealistic and unfair to all of you. You hit the nail on the head today when you said what is normal anyway. Now do not misunderstand me. Wanting Lucy to recover and to gain all the mobility, cognitive, emotional, social ect options she can have to make the choices she wants to make in life is an awesome goal to work towards. That is different that wanting her to be the way she used to be or wanting the childhood she would have had if she had not gotten cancer. Of course her illness is going to play a part in shaping her life. IT is like me saying to you go back and be the same mother you were before this happened, it is just an impossible thing to ask right? The way you see the world now is different. Life altering events are just that.. life altering.
    I have found that watching families take this kind of journey with a loved one, the patients who do the best are the ones who had families who loved and accepted them for who they were at whatever stage of recovery they were in while at the same time pushing them to become better. That is very different than comparing them to who they were before the stroke or brain injury if that makes sense. If you are constantly comparing to what might have been or what was it is hard for the person recovering to constantly measure up. Everyone ends up feeling like a failure that way.
    I actually prayed for this for you yesterday. To lay it on your heart to want the best for Lucy, to push her to be the best and not settle, but to stop worrying if she would be normal ( ie like she was before she got sick ). This gives all of you permission allow her to get better and to appreciate all the wonderful gains she is making. Just because this has happened does not mean Lucy can not have a happy life, does not mean she will not realize her dreams and goals. Does not mean she will not do spectacular things, she already is doing spectacular things!!!
    By the way she is making AMAZING gains. I can see such nice changes in her just in the pictures. The picture of her standing and reaching for the door, what an amazing change from the picture this summer of her in your lap in the wheelchair outside. She has enough options to go to school and manage to get through the day. She is reclaiming and redefining herself bit by bit and what a beautiful thing it is to witness the human spirit rise and conquer.
    She is going to have meltdowns and frustrating days. You are going to have pity parties, it just comes with the territory. I am just so amazed and proud of all of you that you pick yourselves up, dust off and move forward!!!
    I hope I have not spoken out of place, this has been on my mind to share
    Take care and go easy on yourself. To me you are a super hero!!!

  17. Kate, I try to read your blog every day, and you touch my heart with your honesty and courage (because it takes courage to bare your soul like you do). I want you to know how much I admire you and I pray for you and your beautiful family. I wanted to share with you that I also pray for my 6 year old daughter Susanna to have just 1 friend. She has Asperger's and it's been so hard for her to relate to her peers. At after school care there are two little girls who show promise and they seem to be getting along really well. I hope with all my heart that they understand her, have patience with her, and see beyond the quirks my bright, funny, loving little girl. If only. So I know how you feel. I will pray for a friend for Lucy too. God bless!

  18. I LOVE LOVE LOVE LOVE LOVE my painting Ella did for me. I am also very glad didn't read this blog last night... :-) I am so proud of it and her! I love you all! -Miss Emily

  19. My GOODNESS!! Miss Ella is INCREDIBLY talented!!!! That painting is amazing!! :)
    Hyatt sounds like a doll! (even if he has a huge character flaw of not being "in" to cupcakes) ;0 Just kidding! What an amazing boy!
    Loved this post! :)

  20. You need a place like Cloud 9 here. They have cupcakes and frozen yogurt!

  21. Friends sometimes come in the "oddest" package. I'm 36 years old wife and my best friend is a 32 year old male that I've known since my freshmen year of high school when he was only in 6th grade - so twenty years or so. Most people are surprised - when I talk about my best friend - and then use a pronoun or his name. He's stood by me through my roughest in regular life and then stood by me through my toughest health obstacles and stands up for me to others who just don't get me. He does it in front of my face and behind my back (and most of the time he doesn't tell me that he had to stand up for me to someone if he did it behind my back).

    Friends like John & Hyatt are hard to come by and while the package is slightly off (Male/Female best friends) - I feel that God hands place them in our lives and it's up to us to nurture those friendships. John & I haven't always been the best of friends and we even went through a journey where we didn't speak, but our friendship always circled back around again.

    I'm very fortunate to have a husband that understands. Our best friends from elementary school are the purest of friends. Outside influences don't hinder them. I know you must feel very blessed to have Hyatt in Lucy's life.

    Long time Reader: First time Commenter.

  22. What is "normal" anyway? Wanting to be "normal" almost cost me my 12 year old daughter's life. She couldn't take the bullying and being different and attempted suicide in April. I PRAY everyday she finds just one friend that gets her and understands her. We pray for Lucy and your family everyday!!