Sunday, July 27, 2014

make each day count.

it's Sunday.
fancy pants are on and i remembered to take pictures this week.

it's been a long week!
so much has happened, it seems.
my dear sweet neighbor's little boy went in for heart surgery on wednesday up at Primary Children's.  aubrey and i lent he and his mom her and Connor's tiny superhero capes to take with them to the hospital to help bring them extra comfort and luck.
we even added Jace's initials and my friend's name with some of Connor's medical tape:)

 the capes worked!
 Super Jace did amazingly well and was home that same night, and out playing the next day!  crazy, right??!
aubrey and i went up to the hospital to visit him wednesday afternoon, and it was our first time being back since my sweet boy died 7 months ago.  i got really anxious as we were driving that familiar drive up to the hospital......i knew it might be hard walking in those doors again, and through the halls of the hospital where my beautiful little boy took his last breaths.
luckily, as we drove up i saw that the construction for the remodeling they were doing when we were there before was finished and the whole front of the hospital looks completely different now.  we parked and walked through the front doors, but it was like walking into a completely different hospital.
a tender mercy.

i'm so glad we were able to go, and that i didn't let my fear or anxiety get in the way of visiting our sweet friends.
we are doing hard things!
every day is hard----but i am doing it.
i don't know how most days, but somehow i am getting through.
this girl helps.



i have been bugging one of Connor's doctors for months now about the further testing of his autopsy results.  i was under the impression (and so was she, i think) that further testing of my sweet boy's skin and cell samples were being done, that they were still trying to find a diagnosis for my beautiful boy.
apparently, that's not the case.
i received an email from his dr. and in it she said:  "Hi Crissy,
I have been talking with genetics, as well as the pathology lab and our quality teams at Primary Children’s Hospital.  It has been a frustrating process, and I thank you for your prolonged patience.  I think I’ve come to the final “message”, here , but this is not what we’ve been holding on for.  I believe that you have a copy of the autopsy report from January, right?  In there, is the following line:



“A postmortem skin biopsy was submitted to the ARUP Cytogenetics Laboratory for fibroblast culture, and liver tissue was frozen, both for possible future studies.”



I now understand that they hold those frozen tissue samples, with the hope that as we advance our science, we might go back and use the future testing approaches to find a diagnosis.  So for now, the answer is that we wait, as there are no pending studies unless we have new knowledge that informs testing approaches.  I know that you were hoping for an answer.  Still, I can tell you that everything that could be done for Connor was indeed done for him.  That doesn’t bring your “Sweet Boy” back, but I hope it reassures you as a mom that nothing was missed.  You gave him 100%. 



If you have any questions, we can talk (via phone or even a clinic visit if preferred), let me know. 

Keep healing,
Dr M".
this was hard for me to read.
it's heart-breaking to know that i may never know.  i may never know the name of the disease that slowly took my son from me.  i may never know what robbed me of a life with my precious baby boy. 
 i may never know.  
and that's hard.

i followed up that email with one of my own, asking if we could request testing if we came across a disease or type of disease that we thought might be what my sweet boy had.....selfishly, i desperately want to know what took him from me, but i also think it's so important that Aubrey knows, that we know what Connor had so that Aubrey can be aware and tested to see if she's a carrier of the same gene.  i think it's important that she knows!

i got an email in response this morning.  it said:  "My recommendation is that you hold on for at least 10 years, when the results might most help with Aubrey's family planning and our science continues to advance, and then revisit the questions.  I know that's a long time to hold, I really do.  In the meanwhile, make each day count." 

10 years.
this is so disappointing, and she's right, it's a long time to hold........but what else can i do??
i don't have any other options, and i have no control over any of it!  i wish i could know.  i really want to know what took my sweet boy from me!!  i want answers!  but answers are something i have never been able to get in regards to my sweet boy.  i lived his life without answers, and now it seems like i have to live his death that way, too.  i will hold on to the hope that one day i will find those answers.  someday i will have the answers i've been searching so long for.  i have hope that it will happen someday.
in the meanwhile, i guess i'll just have to try and make each day count.
happy Sunday to you..
<3
 






















Wednesday, July 23, 2014

7 months.

7 months today.
seven of the longest months i'll ever know.

seven seems like such a big number, somehow so much bigger than six.
over half a year.
there are some moments where it feels like just yesterday i was holding my sweet baby boy in my arms.  sometimes i can still hear him breathing at night, i swear i hear him cough and i almost get up to go suction him.......but then i remember.  i remember that he's not here and it hurts so badly all over again.  that pain of just remembering-----that is a pain i cannot describe.
it's all so hard.

i was looking through my camera a couple nights ago, looking at pictures starting a few years back.
as i went through the pictures chronologically, i saw the progression of my beautiful boy's unknown disease.  i saw him grow weaker and the pain grow so much bigger for him as time went by.
i could see it in his beautiful face, and i could feel it through his eyes.
i have several video clips on my camera that i took and on those precious clips i could even hear it in his tender little voice.  his little whimpers and soft little whines became so much more labored and frantic as the videos went on.
i could see my sweet boy slowly being taken away from me right there on my very own camera.
i have so many pictures of him.
i think i took at least 20 a day.  it's like i knew i would want them----would need them all in such a short time.  i took pictures of all the creases in his skin, all his fingers and toes, his eyes, nose, mouth, sweet little lips, and his perfectly beautiful almost uni-brow:)
i wanted to remember every bit of him, and i do.
if i close my eyes i can still feel how he felt, sitting so perfectly in my lap, with my arms around him just so.  i can feel my body rocking with his, balancing his ever constant movements.
i can still feel him.
i hope that remembrance never goes away. 
 that's one of my fears as time goes on......i fear that i will forget the little things that i want so badly to remember always.
you can't take away memories, right? 

i know i will always have my memories.  and i'll always have my love.
there is nothing on this earth strong or powerful enough to take that away from me.
it's been seven inconceivable months, and i am still here.
i have hope and faith for the future, that i will be made strong enough to handle it as it comes.
i miss my sweet boy, what i wouldn't give to go back 7 months or a year so i could just hold him!!
mommy misses you, buddy boo.
i am trying my best.  your sister and i are still laughing, smiling, and loving each other so BIG!
we miss you more than anything and can't wait til we can see you again.
seven months closer to that day.
love you, sweet boy.
<3

Sunday, July 20, 2014

keep trying...

it's Sunday, it feels like i haven't done a Sunday post for a while now.
i forgot to take fancy pants pictures, we've already changed into unfancy pants so i'll have to try again next week...

it's been hard.
i'm having such a hard time lately.
i miss my beautiful boy so much, and the pain is so big that i don't know if i can do this.
last night i could not stop the hurt, the tears, the pain of missing my sweet boy.
i couldn't sleep, i couldn't stop crying no matter how hard i tried.
i just miss him!
i miss my son and just wish he could come back!
last night felt like the first few nights without him.  the pain of missing him was so big i honestly didn't think i could get through it......i still don't know how i can.
how can i go on the rest of my life without him??
 is it even possible??
i don't know the answer to that question, i only know i have to have faith that i can.
i have to trust that the pain of missing him won't get bigger than the promise that i'll be with him again one day.
i have to believe that my heart will keep beating even when i can't find the air to breathe.
i have to accept the fact that even though i can't hold him in my arms, i can still feel him if i will just be still and try.
i have to keep trying.
i just have to keep trying.

i am grateful for aubrey, because if i didn't have her i am almost certain that i could not do this.
i know the pain would be too big for me if i were alone.
she is my saving grace, and i know her brother is helping her to help me.
she says just the right things at the right moments, and mentions Connie when my heart needs it most.  i am sure that my sweet boy is whispering those things to her, and i am so grateful for it.

i miss him.
i really miss my perfect little boy.




i don't know how to get through it, and there are moments like last night that i really don't know if i can.........but i will keep trying.
that's all i can do, really.
i know he's safe and free from pain and suffering, and that's what i choose to find comfort in.
i will see him again someday, and that's what i choose to look forward to.
i choose to keep trying.
i love him so much.
i just miss him, that's all.
<3

Saturday, July 12, 2014

fighting the pain.

we've been back from vacation for a few days now and i feel like i need to write..

i am having such a hard time.
i miss my sweet boy so much i can't breathe......it's like i can't catch my breath again because every time i try to get air in, it's drowned out by tears.
my throat closes and the tear ducts are opened.
i miss him so much.
i miss my son!

coming home from illinois, to a house without my beautiful baby boy has been so much harder than i even could have anticipated it to be.
i'm blindsided by how utterly empty everything feels.  it feels like the first few days all over again.  i feel like i just lost him all over again.
it hurts so badly.

maybe because i got used to being surrounded by so many people....
maybe because i was distracted just enough to not be totally focused on the pain....
maybe because all of my precious boy's things are still just as i left them, and he's still not there, his bed is still so empty...
maybe because no matter which home i go to, i know it will never feel like home without him ever again....
maybe because i just love him so much and i just want to feel him in my arms and kiss his perfect face and smell his sweet breath and hear his little noises...

there are so many reasons it hurts, and no way to stop any of it.
i just want him to come back!!
why can't he just come back??!
i just miss my sweet boy.
it hurts so badly because i love him so much.
and i cannot love him any less, so i will take the hurt.  i will feel it all because it means i can feel the love, too.
i love my beautiful baby boy with every single ounce of my soul, and every single ounce of my soul hurts.
 
i was looking for something in the van today and found this picture:
i don't even remember when we took this, or the last time i saw it.
but it made me happy.
for a brief moment, i found respite and the pain was replaced with pure joy and love.
i miss my son.
i miss his presence, his physical presence in my life.
i am crawling through the pain, it may be hard and slow, but i'm moving forward.  ever so slowly, i'm surviving days, weeks, months now.
all the days are hard, some are just harder.
on these days i resolve to fight that pain with love.
i will love harder.
i will try harder.
i will let myself feel the pain because i know i have an infinite amount of love to combat it.
 
mommy misses you, sweet boy.
i love you so much more than you know.
or maybe you do..
<3 

Monday, June 23, 2014

6 months.

six months.
today is the 6 month mark since my sweet baby boy died.
half a year.
it still doesn't seem possible, it seems so much longer to me, to my heart.

one of the hardest things about being home, here in illinois, is that i haven't been able to visit my sweet boy's spot.  i haven't been able to go to the cemetery every day (or every other day, as i was trying to limit myself from going every day).  it's been hard being so far away from his sweet blue spot.
luckily, i have several friends who have been by, they have visited my beautiful boy's grave and sent me texts and pictures to show me he's alright.  it's all ok, everything's still the same.
i am so grateful for their willingness to help me out, to ease my worried mind.
but it's still hard.
i wish i could go myself.  it feels like something his mommy should do, it feels like something i need to do myself.  it's something i want to do.

on the 23rd of each month, aubrey and i take a new tiny blue stone to add to a little bag hanging from a hook above his grave.  i made sure to add the 6 month stone before we left.  i am just sad (and a little guilt-stricken) that i won't be there today to acknowledge this new month, this new anniversary, this new milestone.
i miss him so much.
i wish i could explain to you how much my heart aches for him.
but i can't, because they don't make words heavy or strong or sad or empty enough to do so.
it hurts.
it's hard.
in some ways, it's killing me.

but it's also giving me the strength to live.
my sweet boy----during his life, and now in his death----gave me all the reasons i need to live this life the best way i can.  he taught me what the important things in life are, and has made me strive to be better every single day.  just because he's not here in my arms anymore, doesn't mean his lessons have stopped.  he is still teaching me, guiding me, strengthening me, showing me the way.  i am still learning his divine lessons, even though i sometimes feel like i'm sure to fail the class. 
some days i don't even know if i'm on the right subject, i feel so lost.
but i keep trying.
the lessons are harder for me to learn because it takes much more effort on my part to 'hear' my teacher.
in order for me to feel my sweet boy i need to be in a state of being that allows his sweet presence to be near.  i have to try so much harder to just feel his sweet love, so different than when i could just hold my beautiful boy, kiss his sweet face, and soak in the perfect spirit that he embodied.
i cannot tell you how much i miss those days.
how much my soul misses having my own perfect little piece of heaven in my arms at all times.
all i had to do to feel his spirit was just have him in my arms.
my arms are still so empty.
 6 months later, they are still longing to be filled with the perfect little boy i was so privileged to call my son.
6 months have passed but my heart would say it's a lie.
my heart knows it must be longer than that!
my heart is broken, so i think it has forgotten how to keep track of time.
my mind knows it's been 6 months.
and there are 6 tiny blue stones at my sweet boy's grave, so it must be true.
whether it be 6 months or 6 years, my heart will miss you just the same.
mommy loves you, buddy boo.
i miss you more than you know.
<3


Thursday, June 19, 2014

"at home"

i'm home.
my home, Illinois.
but i don't feel at home.  there isn't anywhere that feels like home anymore, it seems.
home was when i was holding my sweet boy in my arms.
home was when i was kissing his sweet face and taking care of his every need.
i don't feel at home in my own skin anymore.  there is a constant feeling of being lost---like i'm missing something, something important and necessary to survive.  something required in order for me to navigate my way through this life.
i am missing something.
i will forever be missing a most precious part of me, the part of me i was most comfortable with and treasured the most.  the part of me that was home.

i miss my beautiful boy.
i just do.
i am learning to find my way, blindly without him.
i am lost, but i have faith in the path that i am on.  i have faith in the destination it will eventually lead me to.
i have faith because i wouldn't know what to do without it.
i have faith because i need it.
i have faith.

in the last week i have gotten 2 phone calls that, if i had received them just 6 months earlier, would have made me so happy.
it seems as if all the opportunities we had been waiting for, been wishing for, are now becoming available to us.
my beautiful boy had been on the waiting list for the Division of Services for People With Disabilities for 5 years, almost his entire life.  on tuesday i received a phone call that there was great news!  funding has now become available and Connor can start receiving help!
..................................................
 
today i answered the phone to a very nice lady from an organization called SWAN (Syndromes Without A Name).  she was very excited to inform me that Connor was chosen for the exome sequencing i had entered to win several months ago.  this phone call would have meant the world to me if my sweet boy was still alive!  this kind of genetic testing is very expensive and was beyond the realm of possibilities for us to pay for ourselves.  this could have been the testing that lead to answers for my beautiful boy.  this could have been a possible end to the endless frustration of not knowing.  this could have helped my son.
but i cannot live my life wondering what could have been.  i cannot exist in that space of 'what if' or 'why me', or especially 'why him???'
there will never be an answer for that question that i will understand.
i don't understand any of it, but i trust in the divine plan for all of it.
i choose to live in faith, and i am trying my very hardest to embrace and accept what is instead of what could have been.
i am still here, still breathing, still surviving.
i am still living, still loving, still caring for my sweet girl.
i do still feel my sweet boy around me, can still feel his love.
i don't understand God's timing or reasons, but i do have faith in His plan.

and while i may not feel at home ever again, it is nice to look out the window and see countless fireflies flickering in the night.
<3

Friday, June 13, 2014

breaking down..

this has been the hardest week for me since my sweet boy died.
i don't know why, exactly.....i just know that i can't breathe again because the ache and the hurt is so strong.
the grief literally takes my breath away.
i have broken  down more times this week than i have in a while.  every night, multiple times throughout the day, while i'm driving, in the middle of a store,  while i'm just sitting doing nothing, while i'm just trying to survive and breathe.
i am breaking down so many times a day i don't feel like i ever really build myself back up.
i am feeling all this hurt, i feel like i'm drowning in this sorrow and grief and i honestly don't know how i can handle the next moment.  i truly feel like this time it could be too much, and there's no physical way i can handle any more of this pain.......
and then i look up and see my sweet girl.
i see her laughing and playing with her friends.
i see her draw me cute little pictures (almost always including little Connie).
and i know that's my reason.
she is  the reason i am able to pick myself up, piece by broken piece, and somehow find the energy and courage to continue on.
and i know my beautiful boy is there, pushing mommy along, giving me those oh so gentle nudges when i need them most, when he sees me at my lowest.
i know all this.
it just doesn't make it hurt any less.

i am going home on Sunday, back home to Illinois for a summer filled with friends and family and love and familiarity------yet there is that painful reminder that my most familiar companion, my precious little boy will not be there this time.
and that hurts so deep down in my soul i don't even think i can comprehend it.
my soul hurts.
my soul aches for my perfect little companion, my truest soul mate.

i miss my sweet boy.
i am a mess.
i am trying.
i am grateful for my sweet, sweet girl.
she saves me every day.
i trust in my Heavenly Father that he has a plan and purpose for me, even in those dark hours where i can't see past my own heartache.
i will see my beautiful angel again someday.
i just wish it didn't hurt so much in the meantime.
<3