I want to shine some light on what it’s like being a parent to and having a special needs child. I want to be honest and open about our journey. We didn’t have anyone telling us these things we wanted and needed so badly to hear. My husband and I always wanted kids! When we found out we were pregnant, it never crossed our minds we would have a child with any kind of disability. Why would it? You always pray for your baby to just be health and happy! Our labor and delivery story is important to our journey so I want to share it with you guys. I had normal pregnancy, but everything went wrong during delivery. I actually went two weeks over my due date! They finally induced me at 42 weeks. Talk about miserable! I was in active labor for 30 hours, pushed for two hours, and was then rushed in for an emergency section. My son was stuck in my birth canal. He was losing oxygen, and they needed to get him out! There was no time for more numbing medication as they cut open my belly. I felt everything! Our sweet baby boy, Rhenan Jude, was finally here! He was a big boy, almost 9 lbs. There was talk about him being oxygen deprived, but very healthy otherwise. It was then that I took a turn for the worse at the hands of the my doctor and the hospital I was at. I lost a lot of blood during my section, 2 liters to be exact. My doctor didn’t do a transfusion. I was also on the verge of having a hysterectomy. My doctor had to wrap my uterus in mesh because it wouldn’t contract back down. I was finally moved to a recovery room after being in the OR for 4 hours. The next two weeks were a blur. My doctor went on vacation, and left me in the hands of her interns. Two nurses and a doctor missed an infection I got from my section. I had a fever of 102 for over 24 hours before they gave me any kind of medication. I also got blood clots in my legs. Seriously guys, worst experience of my life. It felt like I was dying. Like I got hit by a mack truck. While all this was happening, I still having to care for my sweet baby boy. I nursed him though all the pain. He latched perfectly from the start, praise the Lord! I was unable to change him, rock him, and barely hold him the first few days of his life. I was finally released from the hospital two weeks later. We definitely had a rough start, little did I know, things would get harder.
Rhenan was a fussy baby. He was also a sleepless baby! I remember at six weeks old, he was up for 14 hours straight. This became a normal thing for him. He would nurse every hour at night. Something just seemed off. My husband was so busy with his business, I don’t get much help. The days were long, and the nights were longer! As time went one, Rhenan started missing milestones. He was my first child, so I didn’t really have anything to compare to. I was starting to worrying, but at his 12 month check up, his baby doctor told me not to just yet, and he could just be delayed. Not to mention, he still wasn’t sleeping through the night. Zombie mom! I would ask my mom often it was suppose to be this hard. Rhenan had just started crawling. No walking or talking, awful meltdowns, and self harming. It was at Rhen’s 18 month check up that we were sent for speech therapy, occupational therapy, and physical therapy. He also required SMO foot braces. This child has no muscle strength. I was searching for answers. I just didn’t understand. I had an idea that Rhenan was autistic, but it was hard to even think about. We were sent to a neurologist and developmental pediatrics for evaluations. At this point, I was praying for a diagnosis for my son, because I was scared of what his life would be without one.
In September of 2016, Rhenan was diagnosed with autism spectrum disorder, receptive expressive language disorder, and muscular dystrophy. To be honest, hearing it out loud made my stomach hurt. It was determined that Rhen had brain damage at birth (knew it!!!) and environmental factors that lead to his diagnosis. The whole ride home, my husband and I were silent. We were taking it all in. When we got home, we just cried. We had to sort of grieve what we thought life would be for us and our son. The fact that Rhenan might need life-long care is our reality. I want to say, I love my son more than anything in this world, I would never want to change him! But life is not easy for him. Now that I would change! What kid is suppose to be going to weekly doctor and therapy appointments, blood tests for genetic testing, dietary restrictions, and more. When you child is non verbal, and he has something to say and he can’t. The best thing you know, he resorts to banging his head on the floor until it bleeds. It is something you can’t prepare for. Things get scary and real! Rhenan can’t tell me how his day is, or if someone hurts him. The paperwork alone for having a special needs child is so overwhelming, then financial struggles set it. Costs are unbelievable for therapies and special activities, the diapers you go through in a week, braces that aren’t covered by insurance, and the list goes on. It’s so easy to become bitter and depressed. Your world is nothing you planned or imagined it to be for your child.
After the major grieving process was over (there are always moments even to this day), it was time to go to work! I knew I had to advocate for my son. He deserved a chance to do all the things a neurotypical child did. I am thankful my husband has been right by our side being a voice for Rhenan and encouragement to me. I have to be a SAHM whether I choose to or not. Rhen’s needs are to demanding. Luckily, we were placed with an Early Interventionist through Baby Net in South Carolina. She has worked wonders for us. She connected us with different programs provided by the state, and also with the school district to get Rhenan in a special needs education program. We were still doing several therapies a week at this time. Rhenan finally took his first steps at 2 years old. Oh, what a happy day that way! I felt that first glimmer of hope. He has been in these programs for awhile now, and he is starting to say words and phrases! I am so proud of my little fighter. I just want him to be healthy and happy! Our next huge goal is SLEEP! We are going on almost 4 years without. Pass the coffee, please!
So remember, next time you see that hot-mess parent struggling in the grocery store, think twice before judging them. Instead, encourage them or say a prayer for them! Rhenan has taught me so much about life the past couple years. I count my blessing every day, even on those really hard ones.