Best I’ve Felt Since I Was A Little Kid

Since Getting back from Ohio, Mylin has been doing amazingly! Diabetes continues to be tricky. There are definitely nights we don’t Sleep even a wink, but overall, Mylin has been freaking amazing. We started doing a couple mile walks together at night. The first few walks they had to remind me multiple times to slow down, that they couldn’t keep up. I’m quite the speed walker. Hello living downtown Chicago for many years and having my feet be my main transportation! On the third or fourth walk of the week we were almost home, finishing off a 2 mile walk and I just looked at Mylin. I told them “I am so beyond proud of you. Do you realize you didn’t ask me to slow down once? You completely stayed up to speed with me for almost 2 miles now. You are doing so amazing and I just can’t believe it!” They told me everyone at school has been saying the same thing. Their teachers keep saying they would have never guessed they had such an intense surgery just three months ago. They said their teachers are also telling them that they have so much more color to their skin and look so lively. Mylin also started driving their car to school every day. Something they have never been able to do. They would drive it here and there, but it was very few and far in between because they were too sick to do it on a normal basis. I told them how amazed I was at that as well. They said, “ Well, Mama, This is the best I’ve felt since I was a really little kid.” I felt so many feelings. I told them, “Mylin that makes me happy and sad at the same time. I’m sad you felt so horrible for such a long time, and simultaneously so incredibly happy that you feel so good right now.”

Those couple of ER visits we had last month along with our amazing Dr. MacKay here in SD, and our incredible Nationwide team really helped us to narrow in on some changes we needed to make with medications to get Mylin into a better spot and we have seen such a difference ever since!

Mylin has been full of smiles. There’s been lots of laughter, jokes, and even giving funny hard times that they like to us. They’ve had energy and enjoying leaving the house. We are seeing our kid come fully back to life!!!

In my Timehop today, there was a photo from two years ago on this date. At that point, we had no idea what was wrong with Mylin. We didn’t know that the part of the pancreas that creates digestive enzymes to turn food into energy was dead and Mylin‘s body was starving. You can see it in the photo, especially in their arms and face. We also didn’t know that for the next 2 years that hospital bed would be a very abnormal-normal part of our life. What a road. A very bumpy one. One that I hope inspires people. One that I hope inspires moms to never stop fighting for their kids and to trust their gut, even when doctors tell them not to, or anyone tell them not to. One that I also hope inspires people that have been told nothing can be done with their illness and given no hope, to continue to seek help, information, and possibly most of all a community. If it wasn’t for our pancreas community, we’d still be wondering what we could do to help the kid on the left look like the kid on the right.

Screenshot

Mylin Schaaff

Lemon Grove, CA

Transplant Type: Islet Cell

Transplant Status: Transplanted

Goal: $100,000.00

Raised: $55,844 of $100,000 goal

Raised by 176 contributors

3 thoughts on “Best I’ve Felt Since I Was A Little Kid”

  1. I’m so proud of you, Tif! You have always been a fierce Mama to your kids but watching you because such a strong advocate for My has been so special to witness! I wish you all never had to go through any of this, but you using this blog to document this whole process is going to help so many families in the future. You have turned this terrible thing into something hopeful. And seeing that same spark in Mylin’s eyes that she had when she was 5 when we first met just brought me to tears. I know there are still struggles in recovery and diabetes but I am just so happy for you all to have health again in your family.

  2. So excited for Mylin and the family. Mylin is doing just amazing! And yes what an encouragement she is going to be to so many families.
    God has truly touched her body in a mighty way. And guided the doctors. So thankful for the team of doctors.
    Mylin enjoy getting back to a normal life. So exciting that your driving and wow 2 mile walks at night. Congratulations!

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