The last six weeks have been a whirlwind. A few things weren’t surprising to us when Joshua was born. We knew he would be missing his left arm, we knew he would be missing his left kidney and we also suspected an intestinal blockage. However, we received a few surprises over the course of the next few weeks.
For one, Joshua couldn’t breathe well at all and was on a ventilator for about a week or so. For some reason his lungs weren’t fully developed even though he was born at 38 weeks. Three days after he was born, he had surgery on his intestines. He had malrotation of the intestines, an annular pancreas (which is a pancreas that wraps around the intestines) and a duodenal stenosis (basically a blockage). Surgery went great and after some time he was able to tolerate feeds through a feeding tube with a little medicine to help his intestines out. A little while later we got the news that Joshua’s only thumb was deemed by the orthopedic doctor to be unusable. This was incredibly difficult to hear because now we questioned how much he would be able to use that hand. After we wrapped our heads around that bit of news, we felt hopeful. He was tolerating food, his right kidney was functioning well (despite some reflux), his heart did have a small hole in the wall and some anomalies, but likely he would never need heart surgery, just follow up visits. Everything seemed to be looking up.
Joshua was born with a big black “eye” on one side. The doctors kept telling us that it was just bruised from the quick delivery. I asked almost daily when he would open his eyes, and if everything looked ok with his eyes. Well after a week, they had an optometrist come do an eye exam. We received a phone call at home. The eye doctor proceeded to tell us, that his black eye was actually just a cyst that forms when no eye ball has developed. He also said that his left eye was smaller than normal and had a coloboma (a hole) in the retina. He was hopeful that Joshua would have some sight in that eye, but as of now it is still an unknown.
That moment felt like a kick in my gut. I was devastated. I felt so bad for Joshua, how unfair is life? Not only did he have all of these health issues and only one arm with no functioning thumb, now he could very possibly be completely blind, or at the least, visually impaired. It felt like all of the prayers we had been praying for Joshua were being ignored. I now questioned his hearing and his brain function but praise God, he did pass his hearing test and his brain MRI came back normal. During this time, Mercy Me released a new song called “Even If”. It basically says that God is capable of healing Joshua and taking away all of his hurt and pain, but even if He doesn’t, my hope is in God alone. This song came onto the radio as we were driving to the hospital after that devastating phone call, to tell our parents the news.
I don’t understand God. I don’t pretend to understand why He allows certain things to happen. After that piece of news, I had a lot of uncertainty. I felt like God didn’t care, about me or my son. I sat there in Easter service at Red Rocks church, with Joshua still in the NICU, feeling angry. I didn’t feel like praising God. However, over the last few weeks, God has been speaking His love to me. This last Sunday, my pastor gave a sermon about seasons of uncertainty. How we need to just be faithful even though we don’t understand and feel scared, but God is working. I see God’s blessings and love in the way our family and friends and even strangers have blessed us with their time, services and gifts. God has already brought good out of this situation and I know He will continue to.
I look at my beautiful son and I praise God that He gave him life. My husband and I are excited for Joshua’s future. Although it can feel overwhelming thinking of the future and the eight specialists we will be following up with, we take it one day at a time. We should have Joshua home with us soon, and I can’t wait to show him off:)
One thought on “Even if…”
We (and friends and relatives) continue to pray for Joshua and your whole family. I felt very sad when on the same day 2000 miles away we were welcoming our 4th totally healthy granddaughter. I found out the next day that little Joshua was having a very rough start at life. I pray for your mom and dad, Ashley. I know this has to be so hard for them. It really is difficult not to be frustrated with God at times like this.
You are a wonderful and loving mom and you will do wonderful with Joshua too. Raising a child with special needs can be a handful, speaking from experience, but you learn so much and the world just looks a little different. Raising my special needs son seemed overwhelming at times but it was a blessing to me and my family. There will be many trials and tribulations but God will be with you and it will be awesome. Much love to all.