How are you? It's a question asked of me all the time. I'm fortunate enough that most are genuine and want to know how we are.
I’ve wondered so many times how to write this post. If I
should write this post and if I should then what do I say? How do I encourage
others to continue to adopt children with chronic needs and still be honest with those around me?
I’m not sure I have the answer to those questions. I’m not
sure of most things these days. But I want to share with you my heart.
We adopted a little boy with Thalassemia, specifically beta
major. It is listed as a chronic, life-threatening illness. It’s involved and
complicated. Even with a biology background I get lost in the medical files and
terms and medical trials and gene therapy.
I knew life would change. I knew that in my head, but it’s
always different than living it day in and day out. Let me be completely honest for a minute. It’s harder than I
could have imagined to live this out in life. It’s beyond exhausting.
I’ve traded playdates for doctor’s appointments.
I’ve traded girl’s nights out for a good nights rest after a
long day at the hospital.
I’ve traded my relaxing mornings or letting kids fend for
themselves for getting up to make sure medicine is mixed properly, measured and
taken in a timely manner.
Every two weeks
or so we sit in the hospital. This does not mean that I sit and crochet while
the blood drips into my son’s veins and keeps him alive. It means I get up and
get a slushy for the tenth time to keep him hydrated. It means I coax him to
sleep and switch my Pandora to Chinese music to soothe him after the Benadryl gives
him anxiety. I watch his big, scared eyes stare into me and I remind him that I
will not leave him and he can fall asleep. It means that I wheel his IV cart
into the bathroom with him and try not to die in the mess of cords while
helping him since an entire arm is out of commission. It means I watch the
movie Cars five times in one day. It means I debate with doctors and nurses on how to treat
this illness. It means I go home after 6-7 hours more tired than I can describe.
And dinner still needs to be cooked and kids needs to go to bed.
We miss a lot more church these days. When your doctor says
a simple virus may cause aplastic crisis you tend to stay home if you hear of
colds flying around the kids at church.
You try not to worry when the kid behind you coughs in your face.
Life changed faster than I thought it would. My family is
different than the average family. Our needs are different.
I finally came through the fog of the adoption crisis, and
the medical jargon. But I’m different. I feel the change. My life has been
touched with the threat of the unknown. Friends talk to me about potty training
and recipes and I think I tend to stare into the abyss trying to remember how
to talk about normal things. How do I get my brain to stop computing and
storing information about phenotyping and blood matching? How do I stop being
the advocate, the momma bear, and go back to being the friend? I get lost in my
roles.
I’ll never forget the day the Make-a-wish packet arrived.
Life slammed me in the face. I was so happy for my son, but I held him closely
that night and wiped silent tears with my sleeve. The seriousness wasn’t in my
imagination. It was real. My boy was ill.
The day the doctor called us in to meet with us just to show
us a chart of how ill my son is will be forever seared in my memory.
My kids are trying to understand that they will outlive
their brother. My kids ask how long their brother will live.
They are struggling to know how to talk to him appropriately
about life in general. Do they
talk to him about having grandkids? When he says he’ll live to 100 they look at
me with big eyes and I shake my head telling them to just let him talk. My
oldest knows what it means that her brother was granted a wish. My youngest
cries because he can’t have a wish. And I pray and thank God in my heart that
he won’t. And I wonder is that selfish?
I am often asked what his life expectancy is. I’m a mother
and I talk often about my son’s life expectancy. Let that soak in for a moment.
I talk about my son’s possible death
frequently. I talk of possibilities and chances for life. Let that soak in. After all at the end of the day I’m just
a mom.
I say to them that some are living to 60 these days with a
big smile on my face. I talk to them about the amazing advances being made. I don’t mention that a 30 year old and a
40 year old in my circle just passed away. I don’t mention that his medicine is currently not working. And
then I go home and cry because I realize that if even he lives to 60 I’ll still
be around. I deal with the
constant reality that I will more than likely bury my own son.
Living with chronic illness means I laugh and I watch my son
run and giggle and in the middle of the laugh my heart catches and I remember
to hold these memories in my heart. I remember to thank God for today, for this
carefree moment.
Maybe God won’t call you to it. Maybe He won’t ask this of
you. Maybe He will ask you to travel a different road. But if this is the road
He asks you to walk. Walk it, with great faith. Faith that knows God can move
mountains. Faith that knows His way is best, always.
No regrets. After all I’m just a mother loving her son. Is
it different because he is adopted? No, no way, my heart hurts just as much. But he is my son and I have found a way
to love this new way of life, because it brings me him.
