thats what our brave little son has.
its complicated.
its super uncommon, so there isn't an overabundance of research or awareness.
& thats why we are talking about it, now.
because our son has it & even the fact that the doctors were able to identify it this early is really a miracle in itself. our geneticist had seen a case of it over 10 years ago & saw similarities with isaac.
a lot of doctors don't even know what it is, or have never seen it before.
but he asked that isaac be tested for it & it all came back positive.
i know most of you aren't doctors, & i'm not either. i've just been living in a hospital for the last month. but if you only know two sentences about FA, this is what it is:
fanconi anemia is a rare blood disorder. it often doesn't show itself, or begin to affect its patients until school age - but everything is arbitrary. it could be much sooner, or possibly a bit later. the result is bone marrow failure {the inability to produce blood cells}. The only thing that can be done for this is a bone marrow transfusion. & also because of the problem with blood cells, FA kids are at a much much higher risk of developing leukemia or other cancers, too. FA also can come with its list of anomalies, such as kidney troubles, slow or stunted growth, missing thumbs, an imperforate anus - all things isaac has.
it absolutely broke my heart to hear this about our boy.
i was angry & hurt. daniel wasn't there with me. it was all i could do to make it to my car before i curled up & cried. i had thought the worst was
{possibly} over & this news just took my breath away.
its still hard & i would still possibly cry talking to you about it - but since the initial news, our hearts have changed.
it breaks my heart for our little boy - & honestly, it hurt too, because it broke the dream i had of this perfect little family - perfect as in not having to do with doctors & hospitals & transfusions & cancer...thats not apart of anyones plan when they start thinking about a family. & it definitely wasn't apart of mine.
but then i started thinking more about it & daniel talked me thru a lot & we prayed.
& so maybe isaac won't be 'guaranteed' the long & simple life i wanted for him. but then, no one really is. & in the meantime we can't consume ourselves with what could happen next year, or in five years, or ten because daniel & i aren't guaranteed that time, either.
we are definitely going to fight this with everything we have. we're going to study our brains out & email doctors & other families & we're going to pray every day that God heals our boy. but we are also going to just enjoy him each day for as long as we're all together. however long that is, knowing that he is the perfect boy for us & we're the perfect parents for him. & that the situation hurts - but we won't let it steal our joy in isaac or our joy in life.
this is kind of heavy.
& honestly, this is way worse than anything we had even expected. we had debated as to whether we wanted to share this with people on a really wide scale. but FA doesn't limit isaac or us. it doesn't change the wonderful plans God has for this boy & we definitely still are in need of prayer & we want people to know how they can pray for isaac.
this is going to be a long journey for the three of us & there are about a thousand questions we have, but we'll make it through & we'll keep laughing & loving each other & our son & our Lord.
much love to all of our friends - to the ones we've met & also the one's we haven't.
"Look at the birds of the air: they neither sow nor reap nor gather into barns, & yet your heavenly Father feeds them. Are you not of more value than they? & which of you by being anxious can add one cubit to his span of life?….Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day's own trouble be sufficient for the day"
Matthew 10:26-27;34