These days in 2011 – An Anniversary we won’t forget

It’s funny that the “anniversary” of cystinosis in our lives isn’t June 6 – the day she was diagnosed.  Cystinosis happened in our lives far before we knew it – before we knew Aliyah was a girl, before we heard her heartbeat, before we even knew she was.  But the anniversary feels like the whole end of May and beginning of June, from the first realization that she was losing weight to the tearful phone call to the pediatrician, pleading for an earlier appointment, all the way through to those first long, fearful weeks ago home in a new lifestyle foreign and frightening to us.  Oh, life has changed.  It is now fresh, full, and joyful, even if it’s dictated by a six hour clock.  But oh, do I remember those days.

A letter to us – one year ago.

Dear Self,

I see you sitting there on the couch in your small townhouse living room, your two darling towheaded girls asleep upstairs. Your fear is so deep it burdens heavily on your chest, takes your breath away, stifles your voice.  You cannot ask the questions you are thinking – they are too dark, too fearful, and far too real.

The tests your baby had today are only the beginning.  You have several weeks ahead of you that will test your faith and hope further than its ever been tested.  Only now, looking back over the last few months, have your eyes been opened to the reality of little Ali’s health – her weakness, emaciation, inability to roll over or sit up and now, her increasing inability to even hold up her head.  Her chronic constipation and incessant thirst seem the least of your worries.  You wonder how in the world you could have missed all of this.

You have a long road ahead.  In the next weeks, you will weep many tears as your small, not-even-one-year-old daughter will be poked with needles, strapped to boards for ultrasounds and other invasive tests, and attached to heart monitors.  You will watch her throw up more than you think she can even take in, her little head hanging in limp exhaustion after each vomit.  You will lean your forehead on the white railings of the crib and stare at her, your vision blurred with tears, while the doctor tells you he’s “95% sure” and “it’s a diagnosis I wouldn’t want for my child”.  Every visit from the doctor or medical team will leave your head spinning with questions and information overload, and underneath all of it, your heart will break because the life you had hoped for your precious baby will not be.

You will not believe it when people tell you it will get better.  In your journal, you will record all of the 10 medications Ali must take in the tube through her nose, four times a day, every. damn. day.  You will record every time she throws up and every time you have to re-dose the medication.  In the small family room at the hospital, the pharmacist will patiently explain how to calculate the correct dose so you can mix powder with water and sustain Ali’s life, fighting the little crystals that threaten her cells every day. With a resolution you didn’t know you had, you will learn how to pull an ng-tube out of her nose and re-insert it, while she wails against you, not understanding this new life she faces.

In the dark of your parents’ basement, while someone else gives you respite and watches over your daughter, you will weep tears of fear and despair and hopelessness and guilt.

That first time you take Ali home for the day to celebrate her first birthday, and you fearfully give her all her meds without the aid of the nurses, and she throws it all back up?  That will happen again.  And again.  After the first few weeks, you will not be filled with fear but, armed with some experience and understanding, you will cope.  You will have months of sleeplessness – with two hour feeds in the middle of the night, constant vomits, going through 5-pairs-of-baby-pajamas in just as many hours – but those will pass.  The first Thursday night med night (med nights are on Mondays now) will take you 4 hours and you will only pack 4 days worth of medications, and you will look ahead at endless years of an onerous and discouraging weekly med-prep.

Clean syringes drying

But now?  Now you can do it all in about 30 minutes (not counting washing all those syringes), and while watching ‘The Bachelorette” too.  The tremendous fear of the internal damage that happens in Ali’s body when she doesn’t miss a dose is still daunting – but now you can accept your humanness when the alarm isn’t properly set and you miss a dose, and your world doesn’t melt around you if she throws up.

First Birthday

You will doubt God.  You will question how he could be a God of love in a world of suffering, how people see you as strengthened by your faith when others you have met without faith seem stronger than you.  You will explore atheism and evolution and agnosticism, and you will let your doubt control you.  But you will also be surrounded by people who care, listen, truly hear, and pray.  You will not lose faith.  But you will walk around in the dark for awhile.  Perhaps for quite a long while.  That’s okay; God is God in the dark, too, and he can handle all of your questions and uncertainties.

You will not believe it when people tell you it will get better.  After all, what do they know?  You will be overwhelmed when you realize only 12 other Albertans struggle with this, and you will not appreciate anyone who tries to encourage you.  Cynicism is an ugly thing and you don’t wear it well, but you are so blessed to have friends who can tolerate you in your ugly moments!  It IS true that they may not know what’s like, but regardless, they’re right, it will get better.   Your three-year-old will help you administer supplements and vitamins, and will know words like potassium and cysteamine before her half-birthday.  You will manage endless rounds of vomit and countless loads of very smelly laundry without losing your own lunch!  You will learn early to trust both sets of parents to Aliyah’s care and thus will have some much needed sleep on occasion.  You will even go camping with all those meds – in a tent.   You still don’t wear a watch and you rarely miss the exact moment at noon/6/midnight/6 when the next dose is due.

So here we are, one year later, and while your life is entirely different, the little baby you thought you were losing is bursting with personality and energy and zest for life.  She is no longer immobile.  Her head doesn’t lag when you lift her up.  She is walking, running, dancing, learning to leap!  With the vocabulary of a four-year-old, she chatters your head off about anything and everything, with a sense of humor destined for some stage somewhere.  Her sleep is uninterrupted by meds or throwing up; she no longer pees through everything she wears; she doesn’t drink fountains of water and she actually likes food.  She is adored by her older sister, doted on by her grandparents.  And she has a far deeper faith than her parents.


Your reality is not the same anymore.  Neither is Aliyah’s.  But it is full of hope, full of love, and full of dazzling joy.  You are surrounded by people who have cared for and prayed for and blessed you and your family; you have a new home; meds are not a daunting, hopeless, overwhelming, life-consuming task but rather just part of your daily life.  You still have questions – your daughter’s future is so full of unknowns – but then, whose future isn’t?  And truly, you are full of gratitude.  Gratitude for the science behind Aliyah’s ability to survive and be healthy within the diagnosis of cystinosis; gratitude for the technology and support of medicine; gratitude for the compassion of hospital staff and friends and family; gratitude to a God who gave you and your daughter a second chance you feared (this time last year) would not exist.  You have learned to relinquish control and rest in the now, the only time any of us have.

So on this long “first anniversary” of cystinosis, you recognize and understand the challenges.  You are aware of the unknowns that lurk ahead, of the trials that you and Aliyah – and Sara, as she experiences and copes with her sister’s condition – will each face.  But you do not mourn, not now.  You rejoice that your friends and family have patiently stood by and listened to your frustrations and fears, that your husband has been a solid rock even as he walks inside of his daughter’s diagnosis, and that God has faithfully guided you in the dark.

On this one-year-anniversary, you CELEBRATE!