December Isla Update
Just a little Isla update!
First and foremost, I would like to wish everyone a very happy “pajama day” Isla might be more excited about this day than actual Christmas She has been looking forward to this day literally since pajama day last year when MOM FORGOT …sorry kid! (and a huge special thank you to our friend Leanna Perkins for the amazing custom Bluey PJs. Isla feels like a million bucks)
This week has been a good one even though we are facing new challenges quickly. While we are very excited Isla has the opportunity to be on this new medication to hopefully slow down her eye deterioration, we knew it could come with some side effects. The only real noticeable effect we are seeing is fatigue. Isla sleeps a full 10 hours each night but there are many days where she just can’t keep her eyes open after 1-2pm. LUCKILY she is surrounded by such amazing advocates (Allana Dews being her #1 always) and they let her listen to her body and rest when she needs it. As a mother, there is no way to possibly describe how thankful I am that Isla always has such an amazing army looking out for her and helping her when she doesn’t know how to ask for what she needs. Her little body is going through so much right now, I am just glad she is able to get the extra help she needs to keep fighting.
Another new obstacle we are learning to keep our eyes peeled for is sensory overload. Because Isla struggles with her vision, super loud or busy environments can sometimes be too much for her. I can see the overwhelmed look on her face and that’s our cue to find somewhere quiet where she can adequately absorb what’s happening around her.
She’s also dealing with spontaneous emotional moments as well. This is so foreign from the Isla we have always known. To see her cry when she NEVER cried before is a lot to take in. Although she can’t yet verbalize what she’s thinking and feeling, I know. Moms don’t need explanation. They just know. She is scared. She is confused. She is frustrated. She is overwhelmed. In these moments all I can do is sit with her and cry with her. She can’t explain it and doesn’t want to try. So all I can do is put myself on her level and give her the permission to let it out by crying along side her. Our tears are always short lived and followed by a complete bounce back. It makes her feel better to let it out. I get it, I’m the same way.
For anyone reading this who feels sad, don’t let that be what you take away from this. Yes, she has her moments where the emotions overwhelm her but she has already adapted the ability to IDENTIFY, PROCESS, LET IT OUT, and OVERCOME. And if that isn’t a testament to her strength I don’t know what is. While I feel 100 different emotions all day every day, the #1 feeling I focus on is pride. I am so proud of my daughter and I want everyone to focus on their pride for Isla too. There is no way we can expect Isla to stay positive if we are not held to the same standards. Some days it’s easy, and some days it’s an very forced active choice to have #NoBadDays
