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Thursday, February 10, 2005

For the Love of a Child

I mourn the passing of a little girl I do not know.

A few months ago, I read a NY Times
article about the child. She had a rare genetic disease called Niemann Pick Type A. It is a degenerative disease, damaging vital organs and causing painful death before a child passes the toddler stage.

After reading the article, I kept returning periodically to the family website. How was she doing, I wondered? How were her parents coping? I was shocked to find out yesterday that the little girl had succumbed to her illnesses a week ago. Tears came to my eyes as I read the devastating news.

And yet, surprisingly, it was Hannah’s parents who moved me. Their live updates about their daughter were terribly sad. And still they were full of hope and yearning.

You see, I’ve often pondered the concept of death and its meaning for human beings. Why do we mourn when people die? Should we not rejoice? Muslims believe that Paradise awaits. In death, we come closer to meeting God. So why do we wish for people to remain with us in a world where pain and torture reside? Is it merely selfishness that fuels this desire?

My pessimistic theories were proven wrong with the death of Hannah Mollie Stimell on February 2nd, 2005. This little girl was not much more than a year old. And yet her parents poured love into her.

There was not a trace of selfishness in their souls. They experienced her pain as she did. Perhaps even more, for it is often harder to bear when a loved one suffers. They tried experimental treatments and drugs, moved her from hospital to hospital, soothed her, turned their whole life topsy-turvy in an attempt to save her – in brief, they did all that was humanly possible – all for the love of their child. True love is indeed selfless.

If we do not grieve because we are selfish, then we grieve – as the Stimells do – because of love. Love and life are intertwined: it is love that places value on the concept of life; it is love that creates and nurtures life. One who loves must grieve death, for to embrace death is to succumb to the hopelessness and callousness that causes one to give up on life. And so we grieve death, not because we are selfish, but because we care.

Below I have posted portions of an
online journal the Stimells wrote during Hannah’s illness. I used to think it was Hannah’s fighting spirit that inspired me. Now I understand – with her passing – that it is her parents who will continue to inspire. You’ll see why as you read ahead:

August 23, 2004:
…It turns out that Hannahs feeding tube was jammed up after the radiologist shot the dye and it backfired all over Hannah. If that wasnt enough he attempted to clear the tube with a wire (sort of like snaking a drain. This was after 30 xrays to see if he was succesful and Hannah freaking out…Ultimately we pulled the tube out due the oncoming of mouth sores (mucasitis ) which Hannah is screaming her head off over right now as i write and mommy tries to sooth her to no avail. She is in tremendous discomfort and her lungs are filled with fluid…I hope the morphine kicks in i feel like banging my head against the wall to dull the pain!!!!!…I will now attempt to sing her 3 fuzzy monkeys song.

August 25:
…Hannah still has her moments when she is Hannah and there is nothing more gratifying at 5am when she reaches for me in her sleep and smiles at me…

October 3:
To put it simply it has been overwhelming as we have had to really become 24/7 caregivers!!! Sleep is a forgotten word and I have been a bit dilusional (more so than usual!) Hannah is receiving about 16 meds or so at all times of the day, all different qty doses some .22ml , some 3.75 etc.. Jill is the organizer of the meds and puts them in little plastic bags after we draw them in syringes to put in Hannahs ng tube. Of course she seperates the times and which need to be refrigerated.I have been put in charge of the ng tube formula feeding which entails getting a special bag filled (taking out the air, priming through her portable machine and measuring how much food to put in depending on where we will be going. We always need to bring the machine with us and Hannah is always right by our side as we are attached by her tube. Hannah needs to wear a cute blue mask whenever we leave our immediate room at Ronalds.Our mornings consist of daily visits to the clinic ranging from 2-5 hours depending on what Hannah needs that day . These include blood draws, and iv infusions for some pottasium and magnesium (so eat your bananas!)Hannah needed a hemoglobin blood transfusion on friday and will likely need a platlet transfusion in the next day or so…

October 11:
…It just seems to be finally just breaking me and I feel like checking myself into a hospital…

January 5, 2005:
We had a bit of a scare on Sunday night as Hannah needed a blood transfusion (hemoglobin) and somehow?????? She was administered about 4x the amount she was needed!!! A very dangerous and scary situation to say the least as this could have caused her cardiac failure!!!…

Jan 10:
Once again we are being shaken and tested and now the reality that Hannah is so fragile has set in! Hannah has 2 bacterial infections that seem to be eating up her platlets …I don't know what else to say except pray for us and Hannah.

January 13:
…I feel like a boxer in a 12 round fight being constantly hit and trying to regain my/our balance. Hannah at the current time is now in the ICU (intensive care) at Schneiders Childrens Hospital Hannah is not able to make platlets and has basically none in her body. This is an extremely dangerous situation!!!Hannah does not have the ability to clot her blood, she has had platelet transfusion after transfusion, cat scans and antibody transfusions…There is no way to express to you seeing your little baby girl in a situation like this.

January 21:
Hannah continues to struggle as she has been bleeding profusely from her nose and mouth. She has been requiring hemoglobin transfusions regularly as she is losing blood rapidly…My little girl does nor deserve this and how much can she be put through??Enough with testing us we will do whatever it takes, but please dear G-d hear my prayers and help… If it were just love I know things would be ok.

January 24:
Today is 8 days that Hannah remains unconscious and still on the ventilator a very tough thing for Jill and I to sit by and watch…

January 26:
Hannah remains on the ventilator, and things are not doing so well. Hannahs lungs have become more rigid, her platelet counts have dropped again and she is struggling...

January 27:
Hannah remains very sick…Right now the more serious problem remains her lungs. The doctors are calling it lung disease as her lungs have gotten tighter. Yesterday we tried an experimental drug that may help her lungs, it was administered as an injection…

January 30:
Hannah remains basically the same, she is still unconscious and on the ventilator.Her platelet counts have dropped back down and she has been on a constant drip of platelets. This continues to baffle all the doctors… Our road is long and slow but all we ask is for a road to travel.

February 1:
Hannah is not having a good day! Hannah once again seems puffier and has retained more fluid, her platelets have dropped but the worst is she has needed to get bumped up to 85 percent oxygen(from 40-45%) and her pressures all needed to be raised. Her blood gas levels also decreased. Once again we are being tortured!

February 2:
The most difficult journal to write as our beautiful Hannah our heart and soul passed away in my arms this morning at 6:25. I cant even write this as tears stream down my face. Hannah struggled last night into the morning and fought as her little body was plagued by this terrible disease in her lungs. She just couldn't take it anymore and after almost 3 weeks on the ventilator Hannah took her last breath… the pain is immense as I think that we will never be able to hold our baby ever again. She meant the world to both Jill,myself, my family and everyone else she touched!She is the bravest little girl in the world our true hero and a real fighter. I thank G-d for the opportunity to have her in our lives and for allowing me to be a daddy and Jill a mommy… You are our heart and soul. We love you more than anything. Hannah please finally rest in peace until we meet again…


  • At 2/12/2005 05:09:00 p.m., Anonymous Anonymous said…

    Subhan'Allah. Love is quite the strange emotion. It gives us life's greatest joys, and causes us life's deepest pains and wounds.

    The Messenger of Allah (Allah bless him and give him peace) taught us to remember often, the destroyer of pleasures, death. Those who have faced death's door, and been returned to life, truly learn to live as we *should* live.


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