PWS Awareness Month- Day 24

Hi Everyone,

Another popular question we received was how is Kemett at being a big brother.  Mabel is now 9 months old, and moving around, stealing toys, and so much more!  Kemett is a great big brother.  He asks about his sister, talks to her, and plays with her.  He also gets upset when she takes a toy or is in his space when he’s playing, but I think those are pretty typical things.  They are really cute together and you can tell that he cares about her so much!  He says things like, I love you Mabel Grace or asks how she is doing.

We are looking forward to see how they grow together as they get older.  It was really important to us that Kemett had a sibling.  Someone to play with, to push him, to be there for him and vice versa.  We also wanted there to be someone who will be there as he gets older and we may not be able to help him if something happens to us.  I know that is pretty heavy and we hope that responsibility does not fall on her shoulders completely.  It was not an easy journey to get here, as we talked about last year, we did IVF for Mabel because this was so important to us.

We don’t know what life will look like going forward.  Up until this point, our life has revolved around Kemett- his diet, his therapies, doctors, etc.  And they still do for the most part, but he has also had to get used to my attention being taken by Mabel for eating, etc.  We want them both to know that they are important to us, and equal.  We don’t want Mabel to ever feel like Kemett is our priority and that she is just stuck or unloved.  I hope this makes them both stronger, more patient, flexible and loving people.

Mabel has been such a great addition to our family.  It has been a different experience for sure!  In many ways, it has been therapeutic and healing.  I had a VBAC for her because the thought of going into an OR again gave me anxiety and brought up too much from Kemett’s birth.  I wanted to rewrite the story.  It was not easy, but I would not change this for the world.  Mabel also was able to breastfeed immediately.  This has been an amazing experience after exclusively pumping for Kemett for 9 months.  She is loud!  She can scream and cry like none other and that took a lot for us to get used to.  At the same time, she can be quiet and very easy going.  She is fast and strong and is already standing independently.  She’s on the move and getting into everything.

One big thing is that she does not have food allergies.  This has allowed us to have lots of talks with Kemett about his allergies, his special tummy and being safe.  I was anxious about this at first, but I think it has been a good thing.

We know that life is not always easy for a sibling of a child with special needs.  My hope is that we are able to make them both feel special, let them be their own person, and grow together as a family.  We will take it one day at a time.

I was talking to a dear friend recently about this very subject.  We feel very complete right now with 2 children, but I said I worried about who Mabel would go to for support if Kemett couldn’t be that person.  And my friend said, how do you know that he won’t be that support for her?  How do you know there won’t be a treatment soon that will allow him to live independently or go to college, etc?  My friend has one brother, and she said they go to each other to commiserate about their parents and are there for each other if something happened to a parent.  And of course they are friends.  I hope that Kemett and Mabel can have a normal sibling relationship.  I hope they can get from one another what I’ve gotten from my siblings.   I guess I shouldn’t give up that hope before we even know if it can truly happen.  There are so many unkowns in our future, so I will go back to living one day at a time and doing the best we can raising these two beautiful children!

Please let us know if you have any questions!

Love,

The Demands



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