2025 will be a year we will always remember.

(This will be a long one, so I hope you'll stick around until the end.)

2025 is a year of growth, learning, and immense love. We have been stretched in so many ways, beyond what we could've ever imagined. I wanted to share some of the valuable lessons we have learned this year and how we got to this point. I wanted to share our story from the beginning at birth (literally), to the discovery of the diagnosis, until today and all of the things we have learned through this journey. Maybe someday I'll write a memoir... but for today, I write this update! 

This story actually begins the year before this one. 03/15/2024: I found out I was pregnant! My pregnancy overall was fairly smooth, and all signs pointed to a healthy baby boy due 11/26/2024. I found out I had PCOS in January and was shocked and ecstatic to find out that I was pregnant after over 9 months of trying to conceive. The first half of my pregnancy felt terrible. Constant fatigue, nausea, vomiting, food aversions, sensitive smell (seriously I didn’t open the fridge for like 3 months) just to name a few. By about 22 weeks I finally was starting to feel a little better. But then was diagnosed with gestational diabetes at 25 weeks. At 38w3d I went into labor naturally/spontaneously. The delivery went well with all things considered. (I can share the birth story for those who are curious at another time, or privately)

11/15/2024: the best day of our lives. We finally get to meet the sweet baby boy we've been dreaming about since we found out the wonderful news. When he was delivered, we heard a loud beautiful cry and was so relieved our baby seemed healthy. They laid Jeremiah on my chest, the feeling I had at that moment was a mix of euphoria, confusion, hesitancy, and disbelief of the person I had grown in my body but just then meeting for the very first time. While he was on my chest (within the first 5 minutes) I heard a gasping type of breathing and expressed my concern to the nurses. They checked him out and decided to admit him to the NICU. He stayed in the NICU for a total of 11 days. At first, he was admitted for breathing assistance, he was on CPAP for 12 hours, then he developed Jaundice and was under the phototherapy lights, all while having a difficult time feeding (taking the bottle and/or breastfeeding). For anyone who has experienced any time in the NICU, they know that it may be quite possibly the most traumatizing experience as a first-time-mom. The hectic nature of juggling recovering, learning to pump/breastfeed, the dramatic hormone shift, on top of being a nurse, yet still feeling completely helpless as strangers care for the entirety of your world who is at their most fragile state.

When he finally came home, we were definitely expecting difficult times, as most first time parents do. Jeremiah however would cry almost constantly. He was extremely dysregulated and was very fussy (even the NICU nurses noticed that his cry was very loud and very often). The pediatrician alluded it all to colic, so, as many first time parents do, we tried everything to help him. All the probiotics, diet changes, etc, that you can imagine. Since the beginning (at birth), I felt deep in my gut that something was not typical, but I could not really put a finger on exactly what was wrong. 

By 2 months, I expressed my concerns to the doctor, and he said he was not concerned for Jeremiah's fussiness as long as he was growing. (although he was not correct in this case, we still really do love him and would not have wanted any other pediatrician btw). However, by 4 months, he was almost the same weight as he was when he was 2 months, still very fussy, and not holding his head up independently despite as much tummy time as possible (during the times he was not crying, which was very few and far in between). At that point, we discovered that he had a cows milk protein allergy, and the doctor made a referral for us to see physical therapy as he could not hold his head up. 

At 5 months, we saw a physical therapist who did note that Jeremiah had very low muscle tone and basically the ability/milestones of a newborn. She suggested that we get a referral to neurology and genetics to find out why he is so behind. We had him on a hypoallergenic formula for a few months so that he would gain back the weight he lost due to the allergy. Thankfully, while he was on the formula, the colic/fussiness was finally starting to subside. At 6 months, we were finally starting to see little traces of his sweet personality and realized that the first 6 months of life were not only tough on us, but also tough on him as he was adjusting to life outside the womb. We went to see a neurologist who ordered a Brain MRI, EEG, and WES (whole exome sequencing, a genetic test). We also added on occupational therapy as Jeremiah was not using his hands very much, as well as Speech therapy to help with feeding issues. 

In July of 2025, we received news from the neurologist that the WES test came back positive for a genetic condition. PPP2R5D Neurodevelopmental Disorder also known as Jordan's Syndrome. As of 2025, there are 480 known cases of Jordan's syndrome around the globe. I again, felt a myriad of emotions, relief, confusion, grief, anger, exhaustion, uncertainty, anxiety, sadness. We didn't know what this would mean for Jeremiah. Will he ever walk or talk? Will we ever get the chance to hear our child's audible voice? What does the future look like? What will he do when we are gone? Who could possibly care for him as well as we do? All of the things. Overwhelming. I was able to find solace in the JGA family facebook group and spent months looking at all the other cases and hearing the other parent's stories. I found comfort in how similar they were to ours, while so similar, they were still very different and unique to ourselves. 

For more information on Jordan's syndrome, please see the Jordan's Guardian Angels website and read on the resources they have - I still visit the site often and read on all of the pamphlets/documents and listen to the podcast.

By September, he had his MRI and we had seen the geneticist; which all confirmed his diagnosis. We had found our cause for why he was different from the other children his age and confirmed the feeling I had in my gut since the beginning. The remainder of the year flew by for us with specialist visits, endless therapy sessions, and simply living life navigating through having a child with (I hate saying this) a disability. Learning all that we can and taking all the information we've learned with stride. We learned about all of the different options for Jeremiah (there are not many) but amidst all the chaos and concern, we have learned a few really important things that have kept us grounded and have given us comfort. 

1. This diagnosis does not change the fact that he is our son and does not change his value and contribution to this world. We love him the same, and would do anything and everything we can to help him succeed and live a full life as any parent would. 

2. If we do not believe in him, no one will (at least not as much as we believe in him). We believe that he will exceed any and all expectations we have for him. We believe that he will walk and talk one day. We believe he will live a full, complete, and amazing life full of love and happiness. We believe that he sees nothing wrong with himself, and neither do we. We believe that he can do anything he sets his mind to. We believe that God has a great purpose for his life. We believe. We will never stop believing in him. 

3. We take each day one by one as it comes. Not thinking too far into the future, but looking at our son for now. Exactly as he is. We see him as a precious child of God, no different than any other child, and you should too.  

4. We celebrate any and all wins. He rolls over, we celebrate. He shakes his head, we celebrate. He laughs, we celebrate. He is worth every ounce of celebration and praise that we have. 

5. He is more than his diagnosis and his abilities. Like I have said in earlier posts, He is not his diagnosis. He is a full person, he is not defined by his diagnosis - he is way more than that. He is incredibly bright, funny, sociable, loveable, even-tempered, bubbly, sweet, and kind.

2025 has been a year where we have  experienced unimaginable hardship, but also we are still so blessed to have each and every day with Jeremiah. He means everything to us, and we say this all the time, but we are just so lucky and grateful we get the privilege to be his parents. As I reflect on the past year, I do not see a year of pain or sadness, although there was a lot of that in there. I see a year of strength, resilience, growth, and ultimately, a year to be celebrated. We bid adieu to 2025, and look forward to all the wonderful lessons and growth 2026 has to offer. 

We wish you all a Happy New Year!! Thank you all for your love, prayers, and support, we appreciate all of it. Thank you for sticking around and reading this very long post.