Happy weekend my sweet friends!
sorry i have been so touch and go on my blog lately. we have just been crazy over here and I've been spending so much time just holding jaxon and cuddling him. right now he is napping so i decided to find a quick second to share with you guys how i have been feeling lately...
so as you all know [mentioned in a previous post] we took a trip to a doctor in new york who specializes in jaxons disease [niemann-pick type a] and what they had told us before [no cure] was true. I'm done now. I'm done staying up all hours of the night searching endlessly for something, anything out there that might be a glimmer of hope to save our son. I'm done dwelling on this illness and thinking about "why us?" "why my precious jaxon?" over and over again. I'm just done.
I'm going to enjoy him everyday, like i said from the beginning + I feel as though I fell of course. I'm going to only focus on my child and the things he can do now and not what he might not get to do in the future. tomorrow is not promised for ANY of us and i don't want to spend today thinking about what might happen tomorrow. he is healthy now, he is alive now, he is smiling now! i praise God that i get to hug and kiss him everyday for the last 8 1/2 months. thank you God that i get to wake up another morning to his smiling face and his sweet baby smell. thank you thank you, a hundred times over.
Unfortunately, I am definitely not done being sad, but then again I don't think I ever will. I'll always carry that heart break with me but I refuse to let if define me. I want to live a life I'm proud of. A life that is pleasing to God and also a life that is making my son happy. That also doesn't mean I won't blog about this journey because blogging for me is like my "therapy". My way to get out the crazy emotions + thoughts rushing through my head.
Back when Jax first got sick we made a list of things we wanted to do with him before the year ended. I wanted to share the list with you. A lot of these things we did and hopefully we will be able to check all of these things off and start a new one in the fall! Will you make a list? Of all the things you wish to do with you kiddos, husband or friends/family. Its such a fun way to remind me where to keep my focus. To constantly find grace + joy in everyday.
Follow me on instagram [@exploratorifashion] + use #TheListThatNeverEnds so that we can look back and see all the stuff we have done + remind of all we want to do with our loved ones! Life is short, start checking off things on your list today!
Here is our list:
1.
2. Go to the beach
3. Buy first car [toy of course]
4. Go to the Big Apple
5. Throw an awesome 1st Bday party!
6. Family Photos
7. Cake Smashing Pictures
8.
9.
10.
11.
12. Watch the sunset
13.
14.
15.
16. Visit Peachy + Rocco's grave.
17.
18. Make a scrap book
19. Go to a concert
20. Go to a basketball game with my daddy
21.
22.
23.
24. Take a road trip
25. Plant a tree at my new house
26. Get a jungle gym
27.
28. Learn to sit up by myself [almost there!]
29.
30. Help people love Jesus more [I think this one never needs to be crossed off because he does this everyday + I hope he continues to for the rest of time!]
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| Jax meeting Mickey Mouse |
As always, thank you for reading.
xoxo - tori.
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