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Elijah’s Story

Today my little man turns 5 years old.

Motherhood is quite the journey .  My daughter Ava,  is growing right before my eyes. She is such a beautiful and kind soul. Her imagination amazes me and she often catches me off guard with how mature she can be . She loves her brother so much and I get the pleasure to hear them argue over nothing , a lot. They sure know how to push each others buttons, yet they can’t live without each other.

Becoming a mother has taught me that we are so much stronger than we think.

I knew Eli was breech and we had to have a scheduled c-section. I was terrified . Going in, I felt confident that I was going to nurse and get the whole breastfeeding thing down . I had it all planned out. I’ve learned that making plans means things do not always go our way. Before I got to see him, they told me they were going to take him back because he needed assistance breathing . He had a lot of fluid in his lungs. I was so scared. But they let me take my picture with him and kiss him while my husband followed them .

As I sit here and think about his birth day, I find a lot of it is such a blur . It was honestly one of the scariest moments of my life . I just remember the neonatal specialist coming to tell us that Elijah was born with a bicuspid aortic valve and if they could’t get the resources to help him , they would be transferring him to Children’s Hospital of Los Angeles. All of those words just sounded so confusing and scary at that time. I remember crying a lot daily. Every day in the NICU was a whole different story. From oxygen desaturations to bradycardia’s , it felt like he was never going to go home. I knew he was in the right place .

Ava kept asking where her brother was and to this day, I remember how horrible it felt to go home without your baby.

When he was just 3 weeks old and still in the NICU, we found that he was also diagnosed with an airway condition called Laryngomalacia . All I remember is the ENT telling me that it was something he would eventually grow out of . He had a loud stridor that was common with infants who’s larynx is floppy. It would cause him to stop breathing for a few seconds and then catch his breath. After many tests, they found it was not in conjunction to his heart defect , but rather just on its own. He started getting better with his breathing and finally able to nurse .

His first year felt like we were in a constant state of worry. I worried he would stop breathing at night, turn blue, or him just choke. We were always at the specialists and watching the aortic valve grow as he grew. I’ve learned so many medical terms along the way and have become a lot more aware of the importance of being a true advocate for our children .

It was this experience that has taught me how real my faith is and how strength comes when we need it the most.

Early Intervention 

After our NICU follow up appointment , I was told by the Occupational Therapist that my son was at high risk for developmental delays and that they were going to refer him to the local regional center. I remember walking out of the appointment upset. I called my mom and my husband and ended up in tears. I honestly felt like there was always something with Elijah.

It was like I felt like I was starting to lose myself and realized I needed to start taking care of me too. It wasn’t just about how I felt, it was because I knew that I needed to find a way to show up for my family in a better way . I lived in this constant state of fear, anxiety, worry , and I slowly felt my insecurities creeping in. Our days were filled with appointments , evaluations, and therapy sessions.

As I think back to that time, I clearly see what a blessing all of this was . We had access to the resources and intervention at such a young age. I see the love my husband and I have for each other. We have each other’s backs no matter what . We’ve been through so much together and we’ve grown so much together and individually. He is my best friend and the person I want to continue growing and living my life with. Together , we have these two beautiful children .

As I sit here sharing Elijah’s story, I can’t stop thinking about what a beautiful and special kid he is.

He loves his sister so much. He loves being a little daring boy. He discovered Nerf’s and a love for building things. His memory is sharp and he is clearly super receptive in language.  He does not get the concept of danger and he is an active little guy. He keeps us on our toes and he’s so loving and affectionate.

As we enter the world of kindergarten and IEP evaluations, I can slowly feel the fear and anxiety creeping in. I worry. I worry about finding the right program for him, I worry about other little kids making fun of his speech delay or apraxic sounds. I worry they might want to place him in a class where he is surrounded by disabilities worse than his and he could regress. There is a lot I worry about as a parent. Being on this extra needs journey can be overwhelming if you listen to everyone’s opinions or insight on what they think is best. All you can do is have faith and trust that you know whats ultimately best for your child. It’s taught me a whole new way or parenting and figuring things out.

But here is what I’ve found so far…

All I can do is love and encourage my son to grow and be himself. He is perfect the way he is and we will figure everything else out along the way. This is his journey. We are all on a journey.  He will catch up because I see it. His language and sounds are growing and he is super eager to get his point across. Elijah is persistent and patient when trying to get his point across. The tantrums are getting better and I believe everything will work out the way its meant to be .

Being Ava and Elijah’s mom is such a blessing and I only hope to encourage our kids and watch them grow up knowing the importance of love, family, and chasing their dreams too . My kids motivate me to chase my dreams because I only want to show them what’s possible . They are my why in wanting to do better, become better, and be better .  I know my mom raised me doing the same for me and it’s my job to do my best too.

 

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