You know how you envision your perfect birth story? For some, you picture your healthy, perfect baby. You put on your cute robe you bought off Etsy to look beautiful for all the photos you plan to take in the hospital bed. That was my envision at least. I had a scheduled c-section so I went in feeling great and knew we were only a few moments away from meeting our second son. All my ultrasounds showed a cute chubby, healthy baby boy. I wasn’t expecting any surprises. During my c-section as our doctor was welcoming our son into the world, I heard her say, “Wow! He has a large birthmark...” This is where my birth story would change.
Our son, Leo was born with a rare genetic mutation called Sturge-Weber Syndrome that usually presents itself with a facial vascular birthmark. In Leo’s case, the birthmark covers half of his face. We quickly learned how progressive this disease was and realized we needed to hit the ground running from the moment we left the hospital. Here I was with my newborn baby, scared to death learning what could potentially happen to our son. I was also shocked to see the port wine stain covering most of his precious face. There was so much unknown and most of the doctors at the hospital weren’t familiar with Leo’s condition! My husband was immediately online researching and trying to find specialists in the area. It was such a stressful few days in the hospital I didn’t even want visitors. I didn’t want to see anyone, I especially didn't care about the robe anymore, I just wanted to hold Leo and protect him.
Once we were cleared to go home I was supposed to rest and heal from my c-section. Unfortunately, there was no time to rest. I felt as though I needed to be there with my baby for the endless appointments with more doctors. I pretty much forgot about me and focused on Leo. Due to the placement of Leo’s port wine stain, we needed to meet with a neurologist, ophthalmologist and a dermatologist immediately. Well, we did just that. When Leo was only five days old we were meeting with specialist after specialist. I was trying to be present with every appointment we had and pay attention to what I was being told; which sometimes was conflicting information. Truthfully, I was struggling with being present. I hated that Leo's first few days and weeks were spent in hospital rooms. That’s all I could think about. Thankfully, my husband was able to process everything properly for me. I was too emotional, too hormonal.
My husband had taken a week off work to be with us and help with our other son, Anthony. During that week he probably spent most of it on the phone with specialists and our dreaded insurance company. We had to change our insurance provider once we learned the extent of Leo’s disease. I would occasionally make some phone calls but I couldn’t keep it together through the duration of the calls, so my husband continued to take most of that on. It was not an easy task and was extremely frustrating. I had been so excited to spend that week as a family, and enjoy our new baby. I felt (at the time) robbed of this.
Once Paolo went back to work I really started to spiral into a deep dark hole. There was still so much unknown with Leo and I was going to have to continue to take Leo to the specialists. Thankfully, we had a lot of help from our family. I was able to bring family along with me to many of the appointments when Paolo was unavailable. My milk dried up about a month after Leo was born due to my stress. This may sound crazy, but I grieved that for a while. It broke my heart that I couldn’t provide that for him. I breastfed my firstborn, Anthony and really enjoyed that time with him. Not being able to do that with Leo made me really sad.
Months went by and we found out that Leo indeed had eye and brain involvement. Around this time is when I decided to meet with our pastor’s wife, Erin, who is a dear friend and talk to her about my struggles. For so long I was trying to handle everything on my own. I was not giving my struggles to God, I can tell you that much! In fact, I was far from God. My sole focus had been on Leo!
Once I got together with Erin she had me write down everything I was concerned about for Leo. I wrote things down such as: Will he have seizures? How long will he have to be on medication? Will he have developmental delays? The list was pretty long. Then she had me write down God-given responsibilities for Leo. Things that I need to do for him now. I wrote down: Make sure I give him his medication. Feed him. Clothe him. Cuddle him and play with him. Erin then had me take a good look at both of my lists. She asked me what the difference was between the two. I told her the first list was the future and the second was present day. Erin didn’t need to say anything more and I had this moment of clarity. This moment where I felt God tugging on my heart. I was allowing my fear to take over. Fear was even taking over my relationship with God.
The first list was the burdens we are not supposed to bare alone. We are reminded in Philippians 4:6 "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to the Lord. "
The second list needs to be our focus and we need to be reminded we have been given these responsibilities; God-ordained responsibilities! We should pray for understanding and then we simply obey. 1 Peter 5:2-3 “Be shepherds of God’s flock that is under your care, watching over them—not because you must, but because you are willing, as God wants you to be; not pursuing dishonest gain, but eager to serve; not lording it over those entrusted to you, but being examples to the flock.”
Leo has been our warrior through all of this and God has placed a special spirit inside him. He is the sweetest child and is absolutely perfect, just the way God made him. From the moment he was born we had nurses say they felt something special about him. He touched them in a way they couldn't quite explain. I want to proclaim that all goes to the glory of God. I believe that our God is sovereign and Leo is a witness to that.
I truly hope this will bring encouragement to those that may be going through something that seems almost unbearable. There is hope. We aren’t supposed to do this alone. When we have Christ we are never alone. I suffered through depression for a while but thankfully regained my strength by the grace of God. Not my doing...but the Lord’s. I needed to be reminded that we can not do this alone.
"Cast your burden on the Lord, and He shall sustain you; He shall never permit the righteous to be moved." Psalm 55:22
"Come to me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and My burden is light." Matthew 11:28-30
