Rockford Benefit and more

Thank you to all of you who worked so hard planning, organizing, and executing a wonderful event. It was great seeing so many people who love us and our children at the event. Many faces I haven’t seen in years. The entire event was amazing. The event raised our largest amount yet…over $17,000! This even includes a $1,050 donation towards research! We are so overwhelmed that people would work so hard and take time out of their life to come be a part of ours.

Thank you.

I wrote a lot on here in the beginning. I needed to to keep my mind focused. Now, I don’t know if it is life escaping me or sheer avoidance of dealing with my feelings. When I write, I am forced to see inside my soul and address the junk in it. Many days I feel like I go backwards and not forwards, and that is not what I want to admit.

October marks the one year anniversary of our diagnosis. I still wake up many days and it feels like I just got the news yesterday. In the same moment. I feel like Sanfilippo has been here forever. Make sense?

Anyway, lately as I struggle to thrive….I feel like I take steps back and find myself clinging to the lives of my children. I want so much to let go….in every moment. I can’t control the destiny for my life or my children’s. God is the only one that can and I have to trust, once and for all, that His plan is better than mine. I want to get to a point where I can fully and deeply grieve and hurt, and be honest with the personal pain of loosing, and in the same breath, live fully alive in Christ. It is hard to do, and maybe even harder to understand.

I want to be authentic but not defeated, I want my pain to become my strength. I want more than anything, to accept Sanfilippo, and see all the blessing and beauty in it, while still hoping God is who He says He is. I still can’t wrap my mind around the fact that God is Healer, yet is choosing not to heal my children. Why can’t He show His glory through healing? He says to ask and it shall be given, to have faith that moves mountains….yet this mountain is not moving. I am asking and it is not happening. All the while, I desperately cling to all the promises that just don’t seem true in my life. Does that make my faith void? God not true? Not at all. It means my selfish wants are not the same as what God wants and that is hard to accept.

The more I think about it, the more I believe this is God’s way of securing my children’s salvation. Sure, maybe no weddings, proms, sleepovers, drivers ed, in our future, but it also means, no divorce, no heartbreak, no crazy discipline, our kids hating me and rebelling, drugs, alcohol, or car accidents. I don’t have to worry about my kids falling away from the Lord. THAT is a blessing! He will restore Jayden and Brooklyn fully in heaven…..added selfish bonus if He does it here on earth.

What hurts the most, is knowing that my children are not part of this world. I selfishly want them to be “normal”. I want Jayden to not need a chew toy…I want him to have friends….I want him to be able to say “I love you” or any sentence for that matter. I want him to be a 4 year old. I have to let go of this to fully enjoy who his is and all his strengths….but I still grieve that his life will not be what I dreamed for him. And for Brooklyn. God’s dream HAS to be better. It is staying connect to that truth.

I don’t think I have ever wanted to die more than now. Heaven is so good, so real…..that I can’t see this life fulfilling my longings. That is what He wants from us all. I have a book entitled, everyone wants to go to heaven but no one wants to die. Now, I want to avoid the actual death part like the plague, but everything I want…to be known, accepted, healing, restoration, being forever free from death and sickness, to never be striving to be perfect, and being in the presence of my Creator….living forever fulfilling the purpose he designed in a world that is free from hurt and pain….sign me up! Heaven is what we all want for this earth. Problem is this earth will never give it to us and we live under the assumption it will because it is all we know.

And, time after time our heart breaks because we get so attached to people and things here we forget that God is a God that restores….just not yet. Just not today….So, how do I realize that I can do this? Navigate this lifetime and live like I am visiting here….longing for my home? How can I thrive…to flourish…to grow.

I think in a weird way, maybe that is exactly what I am doing.

8 thoughts on “Rockford Benefit and more

  1. As always I am blown away by your honesty, your faith, your vulnerability, your ability to be real, your deep love for God…and your beautiful children. Although I know that I feel only a teeny tiny fraction of what this pain is like for you day in and day out I struggle too with Why? Why them? Why these two precious children? Why my friend? Why is there no cure? I don't know how you continue to be so strong…you are truly amazing and I am humbled by your friendship. I love you!!!


  2. Wow! Not a big word, but that's all I can come up with right now. I can't say anything or give any words of advice that anyone else hasn't alread said. So I will say thank you. Thank you for having a soft heart and continuing to know and trust that God loves you and is still in control in spite of everything going on around you. Thank you for reminding me that this life is only temporary and my focus should be on what's to come. You amaze me, your strength, your honesty, your love for your family, & your love for your savior truly amaze me. You are an inspiring woman of God! Thank you!!!!


  3. U are such an inspiration! I know that we will never fully know or understand but are constantly reminded through you how precious life truly is! U never cease to amaze me. I love you and will continue to walk through this with you! i miss you more than you know!


  4. Stef- My thoughts and prayers are with you, Justin and the kids. This truly makes my heart sad. You are a very inspiring woman with your words. And believe it or not your faith is making my faith stronger. If someone going through what you are going through can still have such passion for Jesus then what are my excuses. Let me know if there is anything I can do for you guys. God Bless you, praying hard for you!
    Stephanie Wilson-Phillips


  5. My tears join with everyone else's. You live it every day, but we do feel your pain. Let us know how we can support you, back you, be there for you. I do know beyond a doubt that you're covered in prayer 24/7….even at 3 a.m. many mornings! I'm with you on wanting to go to heaven!! Love you!


  6. Oh Stef. We'll never be able to really fully know how you must feel every hour of every day but please know that I consistently pray for all of you. Just like Sarah said, my heart also aches but I do know that God is forever listening. I can't begin to imagine how you keep your feelings in check but I know you have proven yourself a warrior and you'll keep on fighting for your kids and your family. We are always here for you and always praying.


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