i hate talking about Conner in the past tense.
it is a constant slap in myface…wake up sarah, back to reality.
“he was” not “he is”
today was Hunter’s 5th birthday.
Conner was glaringly gone.
absent.
Hunter had a good day. He got to chose the paths we took today. It was a fun day. Well morning I should say. I had made plans to visit with a friend around 2pm so up until that point it was whatever hunter wanted to do. Smiles, donuts, dancing, celtic music, clapping, laughing, kisses, playing…you name it. a wonderful morning. Hunter asked about Conner a few times, like if was he celebrating in heaven today etc.
meeting up with my friend today was good.
she has a daughter with cf, one of Conners first friends with CF. Well hospital buddy i should say. they met when she was in room 41 i believe and Conner was in room 44 or 45. He was 2. She was 4. Now he was 7 and now she is 9. He passed two months ago already, and she is declining each day.
my heart is broken for them.
the same doctors and cf team, the same prognosis, the same cultures, the same o2 issues, the same meds, the same pft results…for two very special children. i was glad to talk with her today. i had to. i wished so desperately that i had someone to really sit down and talk to when we were going thru this with Conner. But I knew of nobody. So as hard as it is to see them walking the paths we just couldn’t escape from, it is more important for me to be there for them as i wished for myself a few months back. we live so close, literally 10 minutes apart. there’s no reason not to. our kids have been in the hospital so many times together…she came to say goodbye to Conner the day he passed. Her daughter came too! It touched my heart that they did. I can’t imagine being that strong to see their worst fear coming true for us…
She made gorgeous red rose hair/shirt collar clips for Conners service.
I know Conner’s holding her hand thru it all. I know it.
He loved her so much.
They were Bingo day enemies. it was a huge game for them. who would win? Conner won every time except his last admit with her…she won!!!! He said that she needed a bingo buddies shirt then too! but bright pink since that was her favorite color!!!! He loved that blank ball they’d call in the blackout game thats usually how he won!
she’s going in to be admitted tomorrow. she’s on a every other week or so iv schedule. home or inpatient. or orals. just depends.
her make a wish is coming up on october 1st…she’s going to mall of america to shop shop SHOP!!!! i’m so happy for her.
but my heart is so heavy for their family. it’s too similiar.
damn MRSA.
I know a cure is of the upmost importance, but MRSA in CF is growing like wildfire. and it is causing these tiny kids to deteriorate rapidly. She cultured MRSA the same admit that Conner did. November 2008. Conner got worse fast…and she has as well.
i hate how cf kept them and all others with cf apart. bacteria is too much of a risk. but they were and still are kindred spirits.
i was so happy to be able to afford to buy her something special today that Connerman had asked for about a week before he passed but it all happened too quickly…so i know that he’s so happy she has it now. monetarily it may sound like a large gift…but it wasn’t enough. more than some $200 gift what i truly wanted to give her was a CURE…
and it breaks my soul that the CURE wont come in time for both our angels.
that is not ok.
she is only 9.
he was only 7.
she has two younger brothers who adore her, that everytime she gets sick they rush to her side.
he has two brothers who now are afraid to hear anyone cough, cus Hunter says that if they catch the coughs they will die just like brother Conner. :(
she has two amazing parents who are fighting as hard as they can, cry when they can, and hurt all the time but you couldn’t tell it by their faces. their knee deep in their fight.
he has two parents wishing to be in that fight still.
oh missy dear you know i’m talking to you. i love you. i love your amazing fashion sense while stuck in the hospital. i love your love of the color pink…BRIGHT PINK! I love your sweet smile. I hate that you’re sick sweety. i wish nothing more than peace, comfort, and love to you. and good health to go SHOP!!!
CF needs to stop.
I hate this for the both of you. Why does this kind of thing have to happen to anyone, much less the kids. CF sucks!
ReplyDeletePrayers and strength to both of you!
You have such a unique and invaluable knowledge of what CF parents are going through because you have been there yourself. Have you thought of devoting time on a regular basis to supporting CF parents? What a precious gift of understanding and comfort you could give them. What a wonderful tribute to Conner.
ReplyDeleteHugs Sarah and is your friend willing to have the CF Community send cards, money, hugs and prayers? Let us know, we don't even need to know who they are if she wishes not to share that..we could send through you. Our Tara has MRSA, short-gut, too. And we run into people over and over that say "cf is no big deal these days" or "she doesn't LOOK sick" (they can't see the feeding tube or mediport!!) Thanks for being so candid and calling a spade a spade. It is what it is and we all live on prayers at our home. God Bless you guys!!
ReplyDeleteYour friend and her daughter are in my prayers.
ReplyDeleteI found you through my friend Kellie. My heart aches for you. Be blessed.
ReplyDeleteBoth families are in my prayers. I hate CF & I hate MRSA. My 6yr old cultured it when he was a baby - we've been fighting it ever since. We're on the cusp of switching from oral to IV... it's a scary place to be - to wonder if IVs will work and for how long. Why is there so little to fight MRSA and nothing new being researched in the pipeline?
ReplyDeleteI'm so sorry for your friends prognosis. The Lord must be working thru you, to give you such strength that you can be there for them now when it must hurt so much. **A million hugs & prayers**
I am a fairly new reader of your Blog, it is a Wonderful Blog, Please keep writing, you write very eloquently, my heart breaks for your loss and emptiness, wish I had known Conner here on Earth. His Life and your story inspires me as well as many others. Sending Love, hugs, and thanks for telling Conner's story and your feelings.
ReplyDeleteHappy (a little late on my part!) 5th Birthday to "brudder Hunter"!! I have my own "Hunter" and know full well how special little Hunter's are:)
ReplyDeleteHope you are doing well, Sarah. I will, of course, catch up with you on Facebook soon but I wanted to come here and wish Hunter a happy 5th birthday! I hope he has an awesome 5th year!!
i saw this today and thought of you...and every one of us that has lost a child to this horrible disease.
ReplyDelete"Do not judge the bereaved mother. She comes in many forms. She is breathing, but she is dying. She may look young, but inside she has become ancient. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works, she IS, but she IS NOT, all at once. .........She is here, but part of her is elsewhere for eternity."
Praying for both families!
ReplyDeleteI hate that CF can take some so young. I am blessed to not have ever cultured MRSA and to still be here. I am 19 now with CF. You are such a strong mom. I admire that deeply. I can't imagine how my Mom feels with 3 of us having CF. If you want you should follow my blog. I would love it! My prays are with you and your family.
ReplyDelete