From Harper's Mom

As you can see by the date below, I've been holding on to this for a little while. I'm sorry for holding out but, I guess I couldn't share another sadness. I wanted to share the celebration of the 4th rather than more gloom. I was wondering where Harper's family was and how they were coping. I'm sure you were too. Um...find that box of tissues before you read any further.

Peace Surpass Understanding
Posted Jun 19, 2009 12:15pm

It has taken me 10 weeks to face the page...a feeling and regimend that once lifted me has created more fear and sadness than I knew existed. I am literally shaking and squinting through the tears to follow the words on this screen but I want you all to know...

I miss Harper terribly. I miss the routine. I miss the kiss. I miss the laughter and the joy. I miss the purpose and the drive he created in me. I miss my friends, my cancer families, and my doctors. I miss the feeling of fulfillment - Harper was my stimulation, mentally, emotionally, physically, faithfully...he allowed me to thrive on a smile and nothing more...I miss that. I am not less greatful, just different.

The child and the story was my purpose. Each day that he woke up dying was a day that had meaning and now those days are gone...a significant amount of empty space has replaced cruisin, power rangers, and the playroom, CBCs, aspirations, counts, and clinical trials. Please don't take my pain as a literal expression of the value of Tatum or myself...I am working towards a new normal and I expect to get there but as you can imagine, this format is a dagger penetrating my loss.

On the day that Harper passed, I knew he would not make it though the weekend. I remember feeling that morning the need to keep him until Easter...why two days mattered in the morning I don't know but by that evening I felt differently. I had fallen asleep next to Harper in the early evening hours. My mother in the recliner, my daughter gleefully playing with a friend, and Brian doing his routine around us. Unaware of how long I had been asleep, Brian accidently woke me up, in that moment the peace was gone...without better explanation the air in the room had changed. I looked at my son and began to cry, the chase was over. I felt differently about where he belonged and I knew that it was no longer in my arms. I held him close and allowed each harbored breath to penetrate my soul, he was swollen beyond himself, a shadow of the boy that ran 6 days before. I absent mindedly watched the sunset through the window of room 542 and finally leaned over to whisper "its okay buddy, you can go. Mama loves you so much and you are gonna be okay." At that moment, tatum walked in the room and I told her to give her brother a kiss because I knew without telling anyone else that he had the permission he needed to go. I kissed my baby on the lips once more and I stepped outside of the room to check on Tate, Brian called out...he called again and the nurse and I walked in...brian said "he's going" Kim held the scope on his chest and heard a heartbeat...Brian moved to the chair and engulfed our sons last breath...it was over, he died in his daddy's arms. I quickly came clean to Brian about telling him he could go...I wanted Brian to understand that Harper was in control of his last moments.

Brian held Harper for the next hour and a half...it felt like 15 minutes. Tatum came in the room and I told her that Harper had finally gotten his wings, she asked if she could give him something...the littlest mama lifted his hand and placed a stuffed puppy dog carefully in the cradle of his arm...she kissed him and ran to her friend. Brian sobbed and in perfect Fae fashion I stood with strength and the light of the Lord, there was something so empowering that night about giving my son the notion and I wanted him to know I was okay.

The next few days were hollowed, completely absent. Trying to remember those feelings of perserverence and serenity...I struggle every morning to remain empowered by the courage, the strength, the resilence and the simple joy that was Harper. I miss my son...its not fair that he was there to consume me and now he is just gone. I understand the lessons very clearly taught to me over the last two years and to all of you as well, but the trade-off is so bittersweet. I want to hear his voice again...

I can only rejoice in the fact that Tatum is remarkable and demonstrates that same resilence and courage. She is a normal 6 year old...having had the greatest birthday and her first visit from the tooth fairy shortly after. We talk about Harper daily...she draws family pictures with Harper in the sky now and casually imitates his personality for show. I am thankful to the Lord for the moments and pray for his continued grace upon my family.

Thank you to Sparrow and DMC, the care you provided for my entire family supasses any and all expectations. I love my girls at Sparrow and I miss you all. To the Docs...God Bless you! Dr. Scott, I miss your banter...Dr. Dylan, I miss your tolerance...Dr. Saah, I miss your confirmation in faith and love...Dr. Gera, I miss your teaching...Dr. Lambart, I miss your motherly care. Thank you to ALL of the residents, there were many a moments that relied on your call to action and I am thankful. Dr. Savansan and Dr. Chu captured a time in my life where I was most vulnerable and managed to enduce friendship...thank you for the reminder that surrendering is not giving up! We will keep moving forward!

To Harper: You are an angel of light...the love of my life...I miss you and will see you again. You taught me and many others the value of smile and the significance of insignificant substance. May you always be lifted as a warrior and a child of pure joy.

"Behold, God is my salvation; I will trust, and will not be afraid; for the Lord God is my strength and my song, and he has become my salvation."
Isaiah 12:2

(just so you know, I opened my bible to this verse just now knowing that the Lord would tell me what I needed to hear...funny how that works isn't it)

Love and Thanksgiving!

Goodnight. I'm going to kiss my sleeping kid.