This is the first picture I ever saw
of my daughter. She was 2 years old. I came home from our meeting at the
adoptions office and put this little picture in this frame in her would-be
room. It would be about two weeks before we met her. Today, as I
walked out of the room, I saw it and it stopped me in my tracks to sob. I had to remember she is HIS
precious child. He is still in control of her life. I don't have to do this alone. He is still the
same God that can take a challenging circumstance, and bring good eventually. Folks
keep reminding me that before she came to this family God knew what she'd
face. It is hard to accept that God called us to walk through such hard things, but I'd do it all again for her not to do it alone. I feel like I am in a daze of
pain. For her and yes, for us. Her life has been too hard, and I won't
lie that I'm a little mad that all the love in the world can't fix it
all. When I returned to work,
someone asked me if the sick child had been my adopted children or biological
children. I looked at them stunned. I can tell you that the pain of
having a child with a life-threatening illness is the same if you birth them or
adopt them. It is horrifying, and the love you feel for them is immeasurable. I know that life is hard for everyone in different ways. I
just wish our hard wasn't so out of control, unpredictable, so
well, chronic as they described it this week. When I put this picture in the frame, I didn't know what
our life together would hold, but I knew God had called me to be her mother.
I guess every parent feels
fear somewhat like I feel, but maybe it's more acute, palpable in many more
moments of the day, when you go through medical tragedies. After all, we
never know what each day holds and there are no guarantees for safe passage on
this earth. In 2017, we have faced more fear then we ever have. I have realized my steady need for daily doses of grace.
The grief I feel this week, as
the doctor officially told me our beloved daughter has serious chronic kidney
disease, is just enormous. Months ago one of her docs pulled me in the hall at
the hospital and honestly told me that it was just taking too long for her
kidneys to re-start and that was probably “not a good sign” for recovery.
Then, Monday her doctor said it was time to “adjust my expectations” for her
recovery and long –term prognosis. The big question we face as we look into the future is this:
As she grows, can these kidneys sustain her? For how long? With how much
support? This is where we continue our prayers.
I am thankful she is happily living
her life, mostly, blissfully unaware of her precarious future. Just like
we all are. There will be monthly reminders all is not so well, but for
now I am praying that God will help me accept this, live joyfully and to the
fullest, and make me stronger to be her mother for what comes next. The doctor tells me
we'll do all we can with medicines and good care over the years to avoid
dialysis and a transplant, but they'll tell me when to worry when they see that
time coming. I am praying it never does... that we can push these kidneys
as long as the Lord will allow them to filter. Not one day of my life had I ever considered how vital healthy kidneys were for so many areas of bodily function. This has been a life-altering education.
Since the beginning we have been
told every HUS patient takes his/her own path, so we will have to watch and
wait and pray. I know that if we do land ourselves back in the hospital
due to illness or transplant, we have our faith, our marriage, and a strong
support system in family and friends to take a day at a time and come out
on the other side. I know no matter what tries to take her down in this
life, she is a strong fighter who will claw her way back to her funny, silly, sassy, outdoorsy-artist self as fast as she can.
Until then...I have to remember every day that Fear is a Liar and tell her that too. He is trying to take my breath, stop me in my steps, rob my rest, and steal my happiness, but after I finish grieving ( one day soon I hope) I can choose to trust and feel His love for the dark times and come what mays and share that hope with my daughter along the way.
