A Post Written By Laith

IMAG1617bwsmSometimes I still get angry, like we’ve been dealt on purpose an unfair hand.  I want to blame someone or something, as if to point them out as being the culprit.  Then I can assign the task to whoever or whatever as theirs to fix this mistake.  Sometimes I’ve thought about writing a letter-

“Dear Santa, elves, et al;

There must have been some confusion.  Our daughter asked for a Thomas the Train set for Christmas but got a fucking BRAIN TUMOR instead.  If you cannot issue us a full refund, then please let us exchange it for a sprained ankle”.

I doubt he’d read it now, he’s probably hibernating.  My wife and I have spent so much of our time and energy on our daughter’s health that just the other day we were surprised that this ordeal has really only been three months.  Three months?  During the throes of chemotherapy and associated post chemo infections, we find ourselves in the hospital for about three weeks each month.  I sleep in a hospital bed alongside Sophie more than my own bed.  I know the walls and the layout of DC Children’s hematology/oncology ward better than I know my own room.  My daughter practically lives there, and in between treatments takes a mini vacation… to her house, our house.  The one she is supposed to be growing up in.  My wife and I have immersed ourselves in peer reviewed medical literature from places like National Institutes of Health, American Cancer Society, scientific publications from renowned cancer centers and hospitals.  I’m learning another language, that of the oncology world.  Words like “apoptosis” and “targeted immunotherapy” and “angiogenesis”, words that I never even knew existed.  Yet despite our understanding of the chemotherapeutic effect of the PLATINUM metal based drugs going into her body it’s hard not to think we have consented to turn our 2 year old’s body into a god damn superfund site.  The energy and time we spend to heal by diet, diet restrictions, supplements, and kicking nurses out of the room at 2am so she can sleep is enormous.

Yet despite all this, I’ve been able to bond with my little girl in a way that only something like this could bring about.  As a working parent with a full time job, I’m fortunate enough to be able to work from home when necessary.  I see my daughter all the time, I see her a lot.  I love seeing her beautiful blue eyes look up at me and smile. I know what her expressions mean, even the crooked ones where she still cannot fully control both sides of her face.  I know her vocabulary, and like any parent, believe she speaks perfectly!  (When she says “daddy I chocky cup ache yum yum” and no one gets it, they are the idiot!  Clearly she just said “father I would prefer to eat a chocolate cupcake, thank you”).  I am acutely aware of the shape of her head as I look at it all the time (is there really a tumor inside?  Where?).  I know the shape of the scar from her brain surgery and I could draw it out if asked.  I know what her frail body can and cannot do now.  And at the end of the day when I go and pick her up and say “give daddy a hug” my heart soars when she actually wraps her arms around me and lays her bald little head on my chest, and leaves it there.  As if to say “you asked for this but this is where I want to be too”.

IMG_5965smI hope that I can have a bond with my daughter like this for the rest of MY life, and not the other way around.  And I pray every day that though we cannot always see it, what we are putting her through is just one more day closer to that reality.

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14 thoughts on “A Post Written By Laith

  1. Laith and Jenna God is still watching over you and your family and you are able to teasure a closenes like no other with Sophie. God has given you the strength to be by her side and the perspective to see the value of life and what you are doing to bring her joy. I pray for you every day. We send you our love and hugs. Aunie Hillary and Uncle Ray

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  2. what a beautifully written letter to the universe. Thank you for sharing all this, Laith. You are a strong strong daddy for Sophie. I’m so glad she has you and Jenna as her guides and protectors through all this. And when you can’t protect her, I’m glad she has your indomitable love and deep understanding. My heart is aching for all of you. So much. But I am praying along with you and I have hope.
    Love from Sufyan, Laila, Ravyn and Faris. We are with you.

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  3. Laith, you are the strongest person I have ever met. You seldom complain, even when you have every right to. I have met a lot of people since I met you 25 years ago and this holds more true now than ever before. I pray for Sophie every night and for you and your family. If there is anything else we can do, please let us know. Kiss that baby girl for me. — Matt

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  4. Preach, it, Laith. I admire your candor and authenticity. I remember sitting in a meeting with you some years ago. You said out loud what all of us gathered around the table were thinking: “That is ridiculous.” Briliiant! And so is this post.
    If Evan wins at a game we’re playing, he says, “You’ve been served.” This is so true of parenthood, too. We all get served in various ways. You and Jenna right now, especially. When I read yours and Jenna’s posts, and go through hard times myself, I think of the Rumi poem, “Break my heart, oh break my heart again…so I may love you more.” It doesn’t help, but I think of it anyway. We send love and encouragement to you all, and have great hope in the fruit of your labor. Know that you can rest on our faith when yours falters.

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  5. I hate that you guys have to go through all of this. I think
    Sophie is very lucky to have such wonderful and caring parents and brother. Hopefully she’ll get back to 100% and you guys can put this behind you, all coming out as stronger people and family because of it. Just know there are a lot of people pulling for you.

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  6. How poignantly, openly, honestly, painfully, beautifully written. No-one deserves to go through this, least of all your innocent little daughter. If strength, love and commitment is what is needed to get you through then you will soon come out the other side of this tunnel.

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  7. Well said, Laith. Both you and Jenna express so articulately feelings that Dan and I have had during Lily’s hospitalizations and what we felt when she was first diagnosed. I know they have completely different diseases but I know what it is to be terrified of the poor options we have for her treatment and to feel frustrated that people can’t look past her medical equipment and see that there’s still this great little girl in there. I hope that this time next year, you will be able to look back at this time as a difficult memory. We’ve been blessed with a reprieve this year (however brief it may be). I hope you get the same soon.

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  8. Hi, a friend led me to your blog. My daughter also has a brain tumor, just finished a year of chemotherapy to shrink the inoperable tumor, is still not 2 years old. Its been a long year and I feel your pain. I will keep you and your family in my prayers.

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  9. Laith, this is a beautiful letter that I hope Sophie will read as an adult someday to look back at what you all went through together. I can’t imagine the frustration and pain at watching your child go through this, but being there for her in every way is a precious gift that she will always have. Hold onto that bond that is growing so strong and enjoy each hug as you hopefully work your way closer to a cure.

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  10. My heart breaks for your family. I pray you can find strength to get through such a difficult time and I hope you get the miracle your family needs and deserves. There is no rhyme or reason to why bad things happen to good people.

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  11. Our thoughts and highest hope are there for you and your family. My 6yr old neice has nueroblastoma and I can tell you it’s not an easy path but the dedication to research, reading and looking after her health will hopefully pay off. Do not give up, sometimes, even after terrible news, things can always change to more positive ones in the future. Keep positive. Stay strong.

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  12. I know you don’t know me but I know Jenna and while I would never want any of this for you now at some point you will get through this and I believe with all my heart Sophie will come out on the other end. And when she does and she is 15 years old and sees what you wrote she will be so incredibly amazed at what a great man, father, human, you are. I will hold you in my heart and I am so happy that my friend Jenna ended up with such a good soul.

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  13. Laith – We have never met – but today your story – Sophie’s story came into out lives through a simple request. Lindsay reached out to a community group here to help find a replacement cat for Sophie’s missing doll from the story if you give a cat a cup cake.
    Sophie’s story has touched our community here in Charlotte – which also touched a number of people at Barnes and Noble’s Corporate office in NY – who searched high and low for another stuffed animal (soon to be on its way – due to the efforts of Brooke Robson).
    Your note above was authentic and real, its words jumping off the screen as a story from a father who simply wants the best for his daughter. Despite being dealt a very unfair set of circumstances – it has only clarified your resolve and increased the clarity of the importance of life’s most critical elements – the hug from your daughter, the value of a smile, the importance and magic of an emotional connection that a parent shares with a child.
    Perhaps if there is anything you need – please let us know – my e-mail is

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