Finding Purpose After Diagnosis
My daughter is the strongest person I know. Kinley’s heart defect was identified when she was two days old. We had no previous warning. She was transferred to the nearest NICU and additional testing was performed. She was diagnosed with Interrupted Aortic Arch Type B, hypoplastic aortic valve and VSD and underwent her first open heart surgery when she was just 16 days old. This was a Norwood procedure that left her single ventricle. Kinley’s recovery from this surgery was complicated and required a 10 week hospital stay. During which time Kinley suffered from airway and feeding issues resulting in placement of a g-tube and an infection leading to a PICC line that we would later come home with. Due to multiple complications, the doctors suspected some sort of chromosome disorder and ordered additional blood test. It was confirmed that Kinley had 22Q11.2 Deletion Syndrome.
Kinley had her second open heart surgery at just 9 months old. The Rastelli procedure was performed and successfully made her a two ventricle heart. She continued to have complications with feeding and the hospital stay was extended for 8 weeks.
Most days were filled with some sort of appointments, whether it was doctor, labs, or therapy. Due to her 22Q11.2 Deletion Syndrome, Kinley has several issues. She is or was followed by cardiology, endocrinology, pulmonology, infectious disease, GI, genetics, neurology, orthopedic, ophthalmology, ENT, immunology, audiology, hematology, allergist and pediatric surgery. She has needed services that included feeding/speech therapy, occupational therapy, developmental therapy, and physical therapy. For these specialists and services travel is required to multiple cities. To date, Kinley has had 8 surgeries, including 2 Open Heart Surgeries, G-Tube place & removed, Ear Tubes, Tonsillectomy, Adenoidectomy and Pharyngeal Flap Surgery.
Kinley is now 6 years old and is doing remarkably well. She loves school and does very well. Her favorite things to do are reading, coloring, playing, swimming, riding her bike, and dancing. She’s come a very long way from her early diagnosis. Our days are still filled with appointments, but with less providers and lots of therapy.
We cope by knowing that the Lord is walking alongside us all the way. We could not do this by ourselves, we frequently lean on friends and family for support. After all, it takes a village, right? We seek pastoral counseling often and it’s very important to find support groups.
Kinley is a fighter, a survivor, a miracle. Our hope for our daughter is that she will live full and abundant life. We hope she dances in the rain, sings at the top of her lungs, and laughs till her belly hurts.
Is There Life Out There?
Sudden flashbacks are racing through my mind of Reba McEntire’s song lyrics:
“Is there life out there
So much she hasn’t done
Is there life beyond
Her family and her home
She’s done what she should
Should she do what she dares
She doesn’t want to leave
She’s just wonderin
Is there life out there”
I couldn’t say it better. Days are filled with appointments, traveling, medicine management, phone calls to doctors and insurance, constant observation, and poop patrol. Yes, I said poop patrol. Do you know that you can find out so much by just examining poop? Charting my daughter’s last bowel movement was not something I thought I would ever have to do. But here I am up to my elbows in shifts…you thought I was going to say something else, didn’t you? In the beginning, you have to take shifts; you have to sleep to be the best you can be for her. Eventually though, someone has to go back to work and then that leaves one to handle everything else…me.
So here I was leaving the finance world behind to take on the greatest job I would ever have. I would like to think that I utilize my Bachelor Degree in Business Management to keep everything organized. It’s no easy task keeping up with all the appointments, 13 different meds multiple times a day, making all the calls to insurance, daily logs, and just maintaining a child. Oh yeah, and let’s not forget the other child in the home. I’ve never been so exhausted in my life!
Time passes and you realize that you’ve traded wage benefits spreadsheets for charts of medicine doses. Things are moving along and you begin to think that you can start to venture looking for a job, but then something will immediately happen and puts you right back in your place where you belong…home. Then one day you look up and wonder, is this it? Is there life out there?
I’m here to tell you that there is life after diagnosis, it just looks different. It’s not what you’ve known or imagined your life to be, but it’s here and now and God placed you here to be that mom for that child because no one else could do it like you can. The child needs you! It’s not all sunshine and rainbows. That child needs someone that will be on top of everything and keep up with all that is needed.
Finding Your Purpose
I struggled with finding purpose after diagnosis. Stuck in survival mode for years can really wear on your soul. How can washing the dishes, doing the laundry, cleaning the house, and keeping my little ones alive have any Godly purpose? I felt like I wasn’t contributing to my family, friends, or community. Plus, I battled with the struggles our family was dealt. And I was sad, like all the time. So, what was my worth? I felt like there was no hope for finding purpose. I couldn’t imagine God finding a purpose for my pain.
Then I opened the Bible and read Romans 5:3-5:
“3 Not only so, but we[a] also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.”
I just started crying. Here in this little message I found everything. We can find purpose in our pain. Our sufferings give us the chance to positively impact this world in a way that no one else can. Your struggles or diagnosis can help someone else going through the same situation. Whatever your story is, there’s beauty and power in choosing to be vulnerable and share your testimony with others. When you’re going through the hard time, it might be hard to see the purpose God has laid forth for you, but know this…the storm never lasts forever! God is with you, always.
I have joined many organizations and shared my story with others. It’s amazing to feel heard. To have someone come up to you and say Thank you for sharing your story because that’s exactly what I’m going through right now. You can be an inspiration to others. You never know who is looking up to you.
I’m not a doctor or a therapist. I’m just one mom reaching out to other moms. I can’t tell you what to do. I can only tell you what I have done and what has worked for me. You cannot control what’s going to happen next, but you can control how you respond. Approach each day with prayer and Thanksgiving, for God has blessed you with another day.
Seek help! Yes, we all need help sometimes! We cannot do everything all the time. Reach out to family and friends when you need some assistance. There is no shame in asking for help!
Find a support group. I have found several and they all serve their own purpose. It’s so nice to find others that know exactly what you’re going through and can relate. Plus, they can be a great resource for you.
OPEN YOUR BIBLE! Find a devotion book or app and seek to hear God’s message. I have completed many different types of daily devotions and I swear it’s written just for me. Every day the message is exactly what I needed to hear. That’s God at work.
Respite care is a necessity. You need to find some time to unwind and be yourself. I don’t care if you go get McDonald’s and sit in your car at the end of your street! Just find some time to rest and reset.
EXHALE FEAR. INHALE FAITH.