She was tiny, frail and unable to meet any of her developmental milestones. I knew her biological mom had used every drug imaginable during her pregnancy. Nevertheless, the neurologist’s diagnosis cut through me. Our adopted daughter would struggle through life with substantial disabilities.
Two years later … another uninvited diagnosis forced its way into my world. It came from a high-risk pregnancy doctor that rushed into the room after a longer than normal ultrasound. He dug the ultrasound wand into my swollen belly while still chewing his half-eaten lunch, “Absent bladder … hernia … heart on the wrong side. Most likely Trisomy 18. The pregnancy needs to be terminated.”
One month later … while carrying my child with Trisomy 18 still safely in my womb, I found myself rushing my 6-year-old to the hospital. As I bent over her, spilling tears on her face, the next diagnosis came from the attending doctor. Our daughter would live the rest of her life struggling with the hardships of Juvenile Diabetes.
I don’t know about you, but when I was a child I never grew up dreaming about having children with life-long special needs. Now, as a grown woman, I am caring for a developmentally disabled child, have a broken heart from a child that has passed away, and care for a child with medical issues. What do we do when life places us in such a foreign reality?
- First, we need to know it is fine to cry. The Psalms give us excellent examples of how to grieve well. They start with crying out to God, asking why, and give us the freedom to have real, raw emotion. Psalm 102, given below, gives us a great snapshot of this. We should be able to go to God with our sorrow openly and honestly. Just as importantly, we should always fill our cries with prayers of thanksgiving and remembering who God is. Jonah’s Prayer in Jonah chapter 2 is another excellent passage to meditate on during our grieving, and certainly helped me through the extra hard days.
- The second thing that has enabled me to press on is to know who Christ is. When my world was so rapidly unraveling, I had to find solid footing. The ONLY place to find tangible help is in the word of God. In His word, I was able to find peace and know that He is in complete control. Having a clear understanding of who God is and His plan for our lives becomes a light during the darkest days.
- Lastly, God has given me a Christ-like friend whose children also have unique needs. We are able to understand each other and encourage each other on a daily basis. A friend who is in a similar circumstance is an enormous blessing! We are able to laugh together, cry together and be honest with our feelings.
Have you found yourself parenting in a hard situation? Press on! My desire is to encourage you and let you know you are not on this road alone, no matter what the uninvited diagnosis may be.
A prayer of one overwhelmed with trouble, pouring out problems before the Lord.
1 Lord, hear my prayer!
Listen to my plea!
2 Don’t turn away from me
in my time of distress.
Bend down to listen,
and answer me quickly when I call to you.
3 For my days disappear like smoke,
and my bones burn like red-hot coals.
4 My heart is sick, withered like grass,
and I have lost my appetite.
5 Because of my groaning,
I am reduced to skin and bones.
6 I am like an owl in the desert,
like a little owl in a far-off wilderness.
7 I lie awake,
lonely as a solitary bird on the roof.
8 My enemies taunt me day after day.
They mock and curse me.
9 I eat ashes for food.
My tears run down into my drink
10 because of your anger and wrath.
For you have picked me up and thrown me out.
11 My life passes as swiftly as the evening shadows.
I am withering away like grass.
12 But you, O Lord, will sit on your throne forever.
Your fame will endure to every generation.
13 You will arise and have mercy on Jerusalem[a]—
and now is the time to pity her,
now is the time you promised to help.
14 For your people love every stone in her walls
and cherish even the dust in her streets.
15 Then the nations will tremble before the Lord.
The kings of the earth will tremble before his glory.
16 For the Lord will rebuild Jerusalem.
He will appear in his glory.
17 He will listen to the prayers of the destitute.
He will not reject their pleas.
18 Let this be recorded for future generations,
so that a people not yet born will praise the Lord.
19 Tell them the Lord looked down
from his heavenly sanctuary.
He looked down to earth from heaven
20 to hear the groans of the prisoners,
to release those condemned to die.
21 And so the Lord’s fame will be celebrated in Zion,
his praises in Jerusalem,
22 when multitudes gather together
and kingdoms come to worship the Lord.
23 He broke my strength in midlife,
cutting short my days.
24 But I cried to him, “O my God, who lives forever,
don’t take my life while I am so young!
25 Long ago you laid the foundation of the earth
and made the heavens with your hands.
26 They will perish, but you remain forever;
they will wear out like old clothing.
You will change them like a garment
and discard them.
27 But you are always the same;
you will live forever.
28 The children of your people
will live in security.
Their children’s children
will thrive in your presence.”