Mother's Day

What do I want for MD?  I want my child back, healthy and free of disease.  I want to have never seen kids on ecmo, struggling to breathe, and struggling to survive.  I wish every child had a pulse of screening and that CHD's were picked up on prenatal ultrasounds.  I wish all doctors offered families hope.   I wish every family with a sick child had a wonderful PACT team like we had at CHOP.  I wish that other mothers never have to endure the heartache that I feel each day and that not another family moment is taken for granted.  I want to have never known a child who died from PH, cardiac illness, cancer, or the million other childhood diseases that are so prevalent now.   I want every mom to feel as loved and treasured as I do by Adam and, on most days, our kids.  I want single moms to know what rock stars they are.  I want my mom friends battling disease to be cured.  I want everyone to treasure the funny moments with your kids.  Enjoy them being wild and carefree.  I want everyone to have a 4 year old tell them everyday that they are their best buddy.  I want everyone to have a 3 year old twirl around in her new dress and then tell you that you are "boo tiful".   I want everyone to have a child like Easton-a treasured soul wise beyond his years.  I want everyone to have a Weston-a warrior, bringing light into the world even after death.  I want everyone to have an Abby-a patient, caring, baby loving girl.  I want everyone to have an Emery-my bossy, bug loving, artistic child.  I want everyone to have a Sutton-the class clown always coming up with hilarious things.  I want everyone to have an Avery-a bossy 4 year old ready to take over the world.  I want everyone to have an Ellie-a sweet girl with a naughty streak.  And, I want everyone to have a Kinley-a sweet love who spreads joy by giving sweet smiles.  I want my friends who have lost children to never have endured that pain.  I want my friends who struggle with infertility to miraculously get pregnant or adopt and fill their home with sweet faces.  My hope tonight is that our kids know that they are loved more than the moon and the stars and maybe, just maybe, Weston will come see me in my dreams..  I love you all and hope you have a wonderful day tomorrow!  

And, I have never missed you more

We went back to Philadelphia this week with a handful of tasks-see our old friends, celebrate Weston's donor and recipients at the Donor Dash, and to meet with Dr. Hanna for our autopsy conference.  Doesn't that just take your breath away?  Weston always wanted to help people.  He would always say that he hoped that if he died, his body would be used to help others.  Amazing.  Walking inside was almost too much to take.  It was exactly like before except my baby wasn't there.  His rooms were occupied by different kids and we were visitors.  My first visitor badge ever-not the bracelet I was used to having.  I am so glad my friend Patrice was there to help us because I was a mess.  We walked through visiting. We started the day by coming to visit the floor.  I  met the new PH doctor, Doctor Hopper.  I wanted to hug her and tell her that I had heard so many wonderful things but I thought that might be weird.  We saw Stephen and he looked just the same-very dapper and ready to embrace the kids.  Stephen is a good guy to see first.  His laid back nature just sets you at ease.  Easton was so excited that Stephen knew that he was getting ready to be a Boy Scout.   Every step, I was reliving over and over.  We walked the halls that I bribed Weston to do PT through.  The halls Weston plays hide and seek.  The bazillion times I went and got him ice and water from the nourishment room.    We looked out the same windows that Weston would look outside to the people walking.  I remember Meredith and I telling him when he was going to get out of the hospital and he was going to be outside with those people.   I had to resist wanting to go to his old rooms just to make sure he wasn't hiding.  I am sure that is so not normal but our little kids felt it too.  Ellie and Avery both asked if we were there to pick Weston up.  We kept telling them over and over that Weston wasn't living there but, I secretly know he is.  He is floating around, playing pranks, giving kids belly laughs, and watching fireworks from Dr. Spray's office.   I was so glad to see so many people that had been through the thick and thin with us but, of course, we missed so many.  New nurses had no idea why our big family was hugging the fellows-the same fellows that I had told them on their first day to please not kill Weston.  Nothing gives you a HELLO to fellowship like a crazy, hormonal mom (with a newborn) being over protective.  It was so great to see them.  Like a proud mom, I could see how they have grown and changed.  They are an outstanding bunch!  We went to eat at Mad Mex.  On the way there, we took the back way and it passes by where the morgue sends their kids out.  I thought my heart was going to stop.  That was Weston's final goodbye to CHOP.   Mad Mex was our local spot but somehow it felt so different.  Then, it was time to meet with the man of the hour-Dr. Hanna.  The kids were so pumped to see him.  The kids have always loved on him but Ellie, well, she has a special place for him.  The big girls always want to call him on the phone, Avery wants to tell him what to do, but Ellie, well, she is just his girl.  She asked all day about when we would see him.  Easton was upset that he couldn't come to our conference.  He is such a star- a rock star among brothers.  Sutton runs behind just soaking it up and becoming the best little brother ever.  Patrice took them to the car while Kinley stayed and visited.  Dr. Hanna gave us some answers-Weston's death was very quick, specific to his lungs, painless, and, we both agreed that it was every single bit of drama and trauma that Weston would have wanted.  He was always a kid with flare and he wasn't going to let us all be weeping around him when he died-he was going to die with the fireworks that he came into the world with-it was going to be his way.  Dr. Hanna went on about how Easton is destined to do big things.  That gave us peace of mind because deciding to bring your 5 year old to live in the hospital with you is not exactly an easy decision.  He also said something really astounding-he said he felt like Weston's siblings were his lifeline.  They forced him to keep on and kept him grounded.  That made me so happy.  We have always questioned whether giving Weston so many siblings was the right thing but, it was.  They loved, hugged, kissed, fought with, kicked, pinched, bit, beat up, and, in the end, mourned him.  While it was definitely a hard visit, coming back was just like coming home to family.  It was great to hug everyone and let everyone, even June, the therapy dog, know how much they meant to Weston and our family.  And, for that, I am so grateful.

One Year Plus: Now What?

One Year Plus: Now What?

It has been over a year now, and here I sit missing my boy. Over the last year I have been angry, mad, lonely, lost, happy, sad and about every other feeling you can be. My marriage has been the best and the worst, we have fought and cried. To put it simple the last year has been hard.

We where finally able to all live under the same roof for the first time. It is a weird thing to have to get to know your wife a second time. Thankfully we were able to find an Awana’s for the kids to go to, this was such a blessing for Julie and I. The kids got to do their thing and we got two of the most important hours to work on our marriage. I am so happy that we have had this time to reconnect.

The kids have also had their up and downs. They missed us and we missed them. It is so good for my heart to be able to hold my kids again, to be able to see them everyday is so good for me. It is such a wonderful thing to see the kids all together and playing. The kids have shown me so much, the way they remember Weston and tell stories of the fun times they had together.

So after over a year what have I learned, I have learned it is not easy moving on. Life sucks sometimes, yeah it sucks, that is just how life is. I have learned that marriage is hard, and marriage after the death of a child is even harder. Weston taught me many things and maybe the most important was to enjoy life now. 

I would challenge you to enjoy life now and never stop working on your life. Love your family, love your kids, and love you spouse (or whatever). Love will get you though a lot but work will also be required. 

Thanks to all who have help me and my family.

AK

Emptiness

Emptiness 

An empty spot at the table.

A count that is just not quite right.

My world is not that stable.

One missing every night.

What, I would give!

What I would take!

Where did you go?

Now all I feel is alone?

The darkness must not win.

If only just for their sake.

I can not believe you are gone.

The Doctors must have it wrong!

This pain is so real!

The weight is to great!

Why would your light need to go?

To soon for my taste, to little time indeed.

Can you still see my need?

My world has fallen apart!

My family is incomplete!

How do I hold this together?

What can I do?

What new love can there be?

Can you send a clue?

I am down upon my knee!…..

Just waiting…waiting….waiting!!!!

AK

A Simple Thank You

This is for everyone who has every help our family. On this, his one year, we just want to say Thanks!

A Simple Thank You

How does one person thank so many? I have no idea.

How does one person so dear to me touch so many people, in so many ways? I have no idea. 

How does a group of people give hope to so many little children everyday? I have no idea. 

How does a person give back to such people? I have no idea. 

How will I ever get over the loss of one so dear? I have no idea. 

How does this one thing bring such renewed hope in me? I have no idea. 

How does one person thank so many for so much? I have an idea! 

Thank You.



A.K. inspired by W.K.

Desperation

As the days passed and things continued to get worse, Weston had so many tests run-MRI (thank you Dr. Licht who so kindly came in on his day off to show us all of the slides of Weston's amazing brain), CT Scans, bedside broncos, more sedation,  more episodes, more CPR,  more blood work, a line placed in his foot,  and a spinal tap.  In sheer desperation, we reached out to everyone we knew-every single person that came near Weston got inundated with a million questions about what they thought could be wrong with him.  I realize now, I was hysterical.  Adam and I were desperate parents looking for an answer.  Everyone wants an answer for what is wrong with their baby and an easy fix.  Unfortunately, the answers weren't coming easy.  The tests all looked ok.  Of course, Weston was blazing his own trail.  Sundays will never be the same.  Although, his Angel-versary is on Monday, Sunday will always be the day when my heart hurts the most.

Adam and I are so thankful for the outpouring of support for "Feed the Fire".  I don't have a total number yet but I am pretty sure we will break 100!  That is amazing.  Thank you all for feeding your local heroes who took the time to make such a difference in Weston's life and make him feel so special!

The day it all changed

I will never forget us coming in for the day and I knew you didn't recognize me.  You stared in a distant gaze.  Your movements were sporadic at best.  Your eyes longed for you dad and me but we couldn't figure out how to help you.  You just kept starting.  I think you were starting to say goodbye.  God knew we would need that comfort.   We needed just a little more time.  In hindsight, this is the day that we lost touch.   I hope and pray that you went to Heaven that day awaiting a land of milk and honey-or hot cheetos, sour candies, and your best buddy Meg.   This is the day, I feel that you began your journey to Heaven and God was giving us sweet time to say goodbye.  You woke up and said Mama and a few other words before a fever of 105 came.  You were so restless that you ripped out your picc line. We had to strap our hands down because you were so feisty.   I am so thankful that you had your favorite nurses to care for you during this time.  We stayed in the sleep room and Meg would update me.  I would come check on you, on the cooling blanket.  You seemed so cold and yet so hot.  It wasn't fair.  You had fought and fought.  You were the Little Prince.  Somehow, I heard a small voice say this was the start of the end but I couldn't believe it.  That was unacceptable.