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Always be kind.
Always be kind. I’ll admit, growing up over the years I have been guilty of judging and bullying and I’ve been subject to bullying and judging as well. I’m sure we all have at one point in time. This is a topic that many people don’t want to admit to, who wants to be known as a bully or someone super judge-y? Who wants to be known as being mean?
One thing being a special needs parent has taught me is that you should be kind. Just because someone looks different, acts different, walks different, talks different, sounds different, behaves different, etc. doesn’t mean that they’re any different then you and I. We need to be more accepting to our special needs community, they’re just like you and I but with special qualities that make them unique and special!
Jaxson is just like any other eighteen month old, he’s goofy, loves to play hide and seek, loves to play cars with his brother, he loves to dance, etc.
I am strong.
Another trait this journey has taught me is strength. I’m physically strong: I can deadlift 285 pounds, I can squat 235 pounds, and bench 150 pounds.. but emotionally I wasn’t strong. It wasn’t until we had Jaxson that I found my strength and perseverance. I’ve had to fight to find answers, I’ve had to watch our son fight to live to thrive, I’ve had to fight insurance claims… our life with Jaxson is unknown but I’m going to continue to fight and advocate for him. As should you continue to fight and advocate for your child! If you think something is wrong, trust that mommy gut and keep fighting!
We are their advocate, no one else is going to do it for you!
I can still remember when my husband told me how amazed he was with my patience with Jaxson. In the beginning we had many, many sleepless nights because Jaxson was hungry and couldn’t drink enough to stay satisfied. He would take an hour to consume about 2 ounces of milk, definitely not enough to keep a baby full and sleeping. Not only did it take him a long time to eat, he would choke and gag on it as well. It was a difficult process, we had to allow him to suck three to five times, take the bottle away, allow him to compose himself, and repeat. That definitely taught me patience!
Don’t get me wrong, I still lose my shit like any other mom–I’m not saying I’m a saint haha.
Hope for the best / Expect the worst.
Jaxson’s genetic condition is really rare, there is about 205 world wide. There isn’t a lot of literature on it either–everything is so new. What we know about the condition is that most have feeding difficulties, intellectual and developmental disabilities, seizures or epilepsy, microcephaly, and speech delays. There are numerous other symptoms or features that could happen and alarmed me when our genetics team told me. Now that I’ve allowed it to sink in the last few months… I can’t stress about what might happen, I need to focus on what’s happening now. I’ll just worry myself to death if I continue to stress about what might happen. Hope for the best, but expect the worse.
If something does happen we will adapt and overcome.
It’s okay to cry / It’s okay to admit it’s hard.
I cried, cried a lot after Jaxson was born. I cried after every well-baby visit when I found out he wasn’t gaining, he was still jaundice, he was sick again, he lost weight, etc. I was a big pile of emotions and I’m sure the postpartum didn’t help. I cried because I felt like I failed him, I was suppose to be his mom, his protector. Over the last eighteen months I’ve learned that this wasn’t my doing, I didn’t cause any of this, it’s not my fault.
I have learned strength and perseverance with Jaxson but I’ve also learned that it’s okay to cry. It’s okay to admit that it’s hard. This journey isn’t an easy one, but it’s definitely worth while!
Don’t give up!