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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 brain damage.
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 still safely in my womb, I found myself rushing my six 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 gives us a great snapshot of this. We should be able to go to God with our sorrow open 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.
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, dear mom!! Our blog is here for you! Our desire is to encourage you and let you know you are not on this road alone, no matter what the uninvited diagnosis may be.
By Tara Dovenbarger
Tara ~ Thank you so much for not only sharing such a difficult time in your life but for the beautiful and powerful way in which you share how to find hope when your heart is hurting and how to persevere even when life is hard. Wonderful post!
Thank you Stephanie for your amazing support! So thankful for you!
Oh yes, I’m there. My now 19-month-old son was diagnosed about this time last year with a rare genetic condition–one I’d never heard of. It was definitely unwelcome, and the trials we could go through in the next couple decades with him are ones I’d hoped I’d never have to go through as a mom. Thankfully, we don’t know for sure that they’ll happen, but I think if they do, we’ll be prepared.
However, because of the nature of the genetic disease, it’s made me question everything I’ve done since I told my now-husband that I’d marry him. Not that after we married I’d have been able to do anything about it, but leading up to it, was it the right move? That’s the toughest part, and I have to work HARDER now at loving my husband because there’s that doubt–if I’d NOT married him, not decided to have his children, this would very likely not be a part of my life.
For any mom out there going through anything like this or worse, having a close friend you can vent with, or even a certified Christian counselor is a blessing. I’m lucky to have had both.
Wow, thanks Liberty for being so honest. I also understand the doubts about marriage. Philippians 4:8 is the verse I go to when I have thoughts about my husband, maybe it will encourage you?
I’m sure that this time of year will always be difficult for you, as the anniversary of the diagnosis comes up. I would love to hear more about your son and his diagnosis….how many doctors do you have? Is your family supportive? So glad you have a great friend and counselor!! Keep up your hard work!
He has a condition known as Shwachman Diamond Syndrome. It’s in the same class of diseases as Cystic Fibrosis. Funny thing is that when my husband and I got married almost 10 years ago, there wasn’t a genetic test that would have determined there was anything wrong–it wasn’t developed until about 2005/2006!
Currently, he has 3 specialists in addition to his regular PCP. He has to have annual bone marrow biopsies to make sure his marrow is functioning properly–and to catch leukemia early since he’s at a higher risk of developing it. We have our first BMB this coming Friday.
Our family is very supportive–sometimes *too* supportive. As in meddling. Case in point–my Mother-in-law and her sister decided to descend upon us this coming weekend to “help” us with our daughter (3 1/2 years old) while we’re at the hospital for 2 hours. Didn’t ask, just decided. They live 4 & 3 hours away respectively. And, my mom, who’s barely an hour away from us, had already decided to come to do the same. *sigh*
Honestly, the best support I’ve gotten is from an online group of moms and patients with SDS. They’ve been there, done that, are there, or will be there soon. It’s great and the place I can be most open about my fears and anxieties–because they’ll understand better than anyone, other than maybe my husband.
Wow, that is a lot of doctors to go visit:). A lot. I am praying for your family, so glad for the online group of other moms. Will he have to stay over night for the BMB? I will be anxious to hear how it goes! It is hard with family I’m sure. Hard enough to find time in our crazy world to find time alone.
Keep it up! Your in our prayers!!
It’s an outpatient procedure. He’ll be there for a couple hours for the procedure (which will take anywhere from 10 – 20 minutes) but he has to have general anesthesia (which I’m a little more nervous about than the procedure itself.)
Please keep us posted on how it goes. Will there be a lot of pain involved?
As far as I know, if it’s in a younger kid (like mine) it won’t be bad because the bones are softer. Older kids, yeah, there’s more pain, but still not enough to keep kiddos down for more than a day or two… unless there’s complications. I talked to a mom of a little boy a few months younger than mine who already did the procedure, and she said her son was back to playing like normal the evening of the biopsy!
Well good! That will help that he may bounce back so quickly!
Praying for you!!
Well, the procedure went well. I’m expecting results anytime. My son was back to playing like normal with his sister, the dog, and his grandparents within a few hours. And, was he ever happy to have food!!
I do have a blog where I post occasional updates about him: LibertySpeidel.com and look for tags with Shwachman Diamond Syndrome.
So glad it went well! Keep up being such a great mom!!
Tara,
Thank you for your post and for the transparency of your heart. That time of negative diagnosis–one after the other–must have been so tough. Thank you for sharing and giving hope to other mothers.
Your comment about having a Christ-like friend rung so true for me. During tough spots in my life, my good friends and their prayers are what kept me going. Thank God for friends!
Thank you, Alicea!
All of this also reminds me of the story in John 9:1-3
“And as Jesus passed by, He saw a man which was blind from his birth.
And His disciples asked Him, saying, Master, who did sin, (whose fault is it) this man, or his parents, that he was born blind?
Jesus answered, Neither has this man sinned, or his parents: but that the works of God should be made manifest in him.
God knows what he is doing, and will use our children for His glory!!
Also, Psalms 139 gives us a clear picture of our creation. He created our children, they are fearfully and wonderfully made, he saw them woven together in the womb, all the days for our children were written in His book BEFORE one of them came to be.
We can rest because the Creator of the universe knows what he is doing, and is able to be trusted! Someday we will see clearly and understand what does not make sense today!
Tara, I too lost a child to Trisomy 18, and that John 9 passage is one of the key Scriptures that helped me and my husband come to terms with our loss. In our quest to understand “why,” we blamed ourselves, thinking surely we must have done something to deserve this. I hope this passage will help Liberty come to terms with her child’s diagnosis too. “’Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the work of God might be displayed in his life.’” May it all be for God’s glory!
I haven’t had that scripture quoted to me yet, but I’m trying to keep it all in perspective. Most everyone says I’ve handled it very well–especially my grandmother. But, when he was sick and we didn’t know why, all I could do was take things one day at a time and lean on my church family. Taking things one day at a time–sometimes one HOUR at a time–has been the best thing for me.
Wow Jodi. Was your baby a boy or girl? I would love to hear more of your story!