Lincoln Fights & Beats Rhabdomyosarcoma

 Today is a much better day than exactly 3 years ago. Remembering the absolute worst day of my life makes today bad but not as bad as the actual day. I’ve always been a “glass is half full” kinda girl. But, what I would not give to hug, and cuddle, and kiss, and smell my sweet baby boy!! RIP Lincy my love.xxo 

Wow, this year has flown by.  Did you know that there are less than 80 days until Christmas? Things are quite exciting around here…

After 11 days of waiting past my due date, we welcomed our newest blessing in to the family!! Baby #6 arrived on 10-1-10 at 3:46 PM.  Like his brother Lincy, the midwives were convinced that he just had not grown enough and was not yet ready to be born.  Well our new sweet boy may have been comfy in his tiny environment but if he waited any longer, he would have surpassed Lincy’s birthweight (11lb, 2oz) for sure! Baby #6 weighed in at 10lb, 11oz. and was 22 inches long.  A big healthy boy just like his bro!  And, he looks just like his big bro Hendrix when Hendrix was born.  

We brought our sweet boy home later the same evening but without a name.  And, he remained unnamed until 5 days later!  This is what happens when our other children are old enough to have their strong opinions and demand their input.  We have had him for 1 week and we are all enjoying our new treasure. Bella is a bit unsure about another baby in mommy’s arms all the time but she is certainly strong enough to maintain her reign in the house!

We lovingly introduce Lincy’s baby brother:

Maxwell Jude

Born 10-1-10

10 lb, 11 oz.

22 inches

P.S.  Our oldest baby celebrated her 11th birthday on 9/28!! Gracyn was thrilled that she does not have to share her birthday with her baby brother though I thought it would have been quite interesting to have had our first and last on the same day.  Maxwell must have wanted his own birthday too and even his own birth month!

Wow, I cannot believe that we have been without out sweet angel for more than double the time we had him.  He still continues to join my thoughts multiple times daily.  Be it a stuffed elephant, some smirk from his adorable baby sister, or even simply finding a penny on the ground, Lincoln is with me always.  I can never guess when my thoughts are joyous or sorrowful so I just go with it whatever comes my way.  This is how I have learned to cope with the death of my son.  This is how I cherish each and every thought of him, though they are not always happy.  I do wish I could dream of him and it still bothers me a bit that I don’t…NOT EVER.  What does that mean? I do not dwell on this fact much but rather add it to the many things I just must accept.  I have not really been given a choice.  

Our family continues to love and grow!  Sweet Bella is a year old already and SO amazing…yet destructive in ways none of our other children have been.  I think she knows she can pretty much get away with anything since she has each and every one of us wrapped around her little fingers.  I see Lincy in her face and in her eyes and it warms my heart to know with certainly that he surely is her personal angel.  OH, and BTW, she has enough hair for the both of them….it is kinda crazy how much curly hair this baby has.  Those who get to personally see and enjoy her know what I am talking about.  

When I say our family continues to grow, I truly mean that.  Surprisingly, we learned that we are expecting one more baby…..due in September.  This was a HUGE surprise but with all that we have been dealt, this blessing we take with thankful anticipation and hope.  And, it is a BOY which our children are incredibly thrilled about, especially Hendrix who said that we had to send it back if it was another girl!  The funniest thing was that when H found out it was a boy, he also asked if it was his twin:)  Someday he will realize that having a brother 6 years younger than him will not be what he expected when the little guy gets into all his “stuff.”

We continue to pray for the children who have survived this awful disease.  And, we cry for those who have lost and others on the verge of losing their children.  It is ever a roller coaster that sometimes slows down but is guaranteed to rev back up again and NEVER lets us off.

Much Love,

Carlina and gang

At this time of day exactly two years ago, I was waiting for my sweet baby to get better.  He was supposed to get better.  As the day continued, his situation went from bad with hope to worse with hope.  It was after several horrific events (I will spare those who were not there the details), that one of Lincy’s doctors came and told us, “I think the good Lord wants your son.”  All hope disappeared.  The most beautiful gift ever given to me was going to be taken back, stolen really and there was nothing I, we, or any earthly being could do about it.  The good Lord did not seem very good at all.  But, I had prayed for this in reality.  I had asked God when things got really bad that day to free my son from all pain and suffering, to take him if his human body could not recover from this very unbelievable and downright unfair situation.  I hope that his spirit was taken in that instant, that he did not have to continue into the night as we did, waiting for the end, waiting to say goodbye forever.  

I have no great optimistic things to write today, no words of encouragement, nothing to make you think that I have found the silver lining.  Today, I am angry and sad.  I have earned it. I will share this short story below though.  My heart aches (and others too), but I know Lincy is free, happy, radiating!

In the bottom of an old pond lives some grubs who could not understand why none of their groups ever came back after crawling up the stems of the lilies to the top of the water.  They promised each other that the next one who was called to make the upward climb would return and tell what happened to him.  Soon one of them felt an urge, an impulse to seek the surface; he rested himself on the top of a lily pad and went through a glorious transformation which made him into a dragonfly with beautiful wings.  In vain he tried to keep his promise.  Flying back and forth over the pond, he peered down at his friends below.  Then he realized that even if they could see him, they would not recognize such a radiant creature as one of their number.

The fact we cannot see our loves ones or communicate with them after the transformation, which we call death, is no proof that they cease to exist.

- Walter Dudley Cavert

Exactly 2 years ago, Jim and I were sitting at MSKCC waiting to hear that Lincoln’s tumor was out and that there remained no evidence of cancer in his young little and otherwise perfect body.  

That day I clung to Jim and to the words of Jer 29:11:

I know the plans I have for you declares the Lord, plans to prosper and not harm you, plans to give you hope and a future.

I was certain that this was God’s plan for Lincy.  I still wonder how it is that he is not here with us today. I spontaneously wept today which has occurred less and less over time.  I had such a strong feeling of sadness that I looked back through this journal to confirm that this was indeed the day of Lincy’s 12 hour surgery.  I ask myself “why did he have to go through all that only to leave this this world just 4 months later?”  I want to hold him in my arms SO SO Badly.  I want him to be here to touch and interact with his sweet sister Bella.  I want to believe that he is in her and that I indeed am holding a part of him in my arms everyday.  still.  

Bella was 4 months old yesterday.  She brings to us incredible joy.  She belongs with and completes our family.  But, my how fast she is growing.  They all grow far too fast.  And for Bella, her hair is growing fast too.  I mean she was born with a lot of hair.  But now, it just keeps growing and even gets into her mouth.  I swear she has enough to cover the heads of 2 sweet baldies… Lincy and Lia. Bella Lia is perfect in every way!!

To my dearest Lincy.  Mommy misses you SO SO big!!