Comments on: A Dream, a Diagnosis, and an Advent

By: Julie

Julie — Thu, 25 Jun 2020 00:54:59 +0000

In reply to Amanda Conklin. Hi Amanda! Hugs to you! It's so overwhelming in the beginning! But you all will grow and learn and love. It'll be beautiful and hard and worth it! Wishing you the best!

By: Amanda Conklin

Amanda Conklin — Thu, 11 Jun 2020 00:19:37 +0000

Thank you for sharing your experience! I have a 4 month old just diagnosed with sws. Im scared. As scary as the stories are, hearing real people talk about it helps.

By: Abraham Teclu Gebreslassie

Abraham Teclu Gebreslassie — Mon, 06 Apr 2020 13:21:57 +0000

I am really impressed and benefited from the story, I have read much of the contents,
God is our mighty fortress, HE will really help you, in whatever way He likes.
Thank you,

Abraham T. Gs

By: Advocate for Your Special Needs Child: Four Truths to Help You

Advocate for Your Special Needs Child: Four Truths to Help You — Sat, 01 Dec 2018 02:47:24 +0000

[…] see, I never expected to be a special needs parent. Like many, the diagnosis blindsided […]

By: Julie

Julie — Tue, 29 May 2018 03:39:01 +0000

In reply to Anne Miller. Hi Anne, your Harvey sounds like such a wonderful bundle of joy! So glad he is doing well. Yes, if he has a port wine stain on any of his eyelid/forehead area, they should definitely have informed you about Sturge Weber and given you options on when to do an MRI. I'm shocked that they didn't mention it. Are you going to a good "big city" children's hospital? I'm so so sorry to be the one to add this extra fear to your life. But God is near to you sweet sister! P.S. Turns out that my Titus DOESN'T have Sturge Weber, but his lesions are actually from Familial Cerebral Cavernous Malformations. And turned out my other sons have it too, symptom free! But my middle son had one that was bleeding in a dangerous spot and we would have had no idea without Titus' birthmark. Levi just got back from brain surgery. Was literally riding a bike 24 hours after surgery! It's been a whirlwind year to say the least! Here's an update.

By: Anne Miller

Anne Miller — Wed, 23 May 2018 18:03:47 +0000

Hi Julie,
My name is Anne and I’m a new mother to a sweet baby boy named Harvey who was also born with a large port wine birth mark on both sides of his face. He’s only 10 weeks old and we’ve been to many doctors appointments to address the birth mark and to keep checking his eyes for glaucoma( so far so good) but all of our doctors haven’t mentioned getting a brain scan done, if you don’t mind me asking, did you personally request one? I loved your blog about his birth and now this one! As a Christian I find peace and hope knowing there are others along this journey and that we can do all things through Christ.

I pray that things with your son and family are going to well since you found out about the SWS.

By: Prone to Wander: Faith, Fear and Brain Surgery

Prone to Wander: Faith, Fear and Brain Surgery — Wed, 28 Feb 2018 17:26:36 +0000

[…] we got the call I had dreaded. The news that sure didn’t feel like the gift of a “good” […]

By: Julie

Julie — Thu, 13 Jul 2017 01:17:10 +0000

In reply to Sierra. Sierra, you have encouraged me SO much! It is so obvious that you have walked a similar path with our same great God. Praying for you and your precious family!

By: Sierra

Sierra — Tue, 11 Jul 2017 14:55:20 +0000

HI Julie, I am so grateful for your openness about your son’s diagnosis and your walk through this process. Around 9 months of age, we had it confirmed to us that our first son had suffered a stroke at birth leaving him with a diagnosis of Left Hemiparesis (a form of CP affecting only one side of the body). This leaves him at a much greater risk of seizure and subsequent stroke than most people, so I very much understand the fear of the unknown and a sense of loss at the idea of looking to the future… especially when I’ve seen the image of his brain and can see the physical manifestation of this incident. It’s a hard thing to look at. Neurological injury/disease is such a hard thing because Drs. know so little about neuroplasticity. Our neurologist has been so great and honest about these things. Thankfully, we know the best Physician. I can’t tell you how many times I’ve prayed for complete healing- and it hasn’t come IN THE WAY I’D CHOOSE. And yet, there is a great Hope!

I couldn’t agree more with so many things you have said. God is always with us and I have taken some time, but been able to be joyful and accept his stroke as the BEST thing for him. I wonder how I will communicate that with him as he grows and begins to notice the ways in which he is different. Still walking that out with God’s guidance. Aren’t you so grateful He never leaves our side?? I know I couldn’t have made it through the past 3 years without Him. What a glorious experience of His presence to learn to trust in that way.

We’ve spent the past 2 1/2 years in weekly therapy sessions and have seen so many victories! So I am praying that God gives you many victories in the midst of what seems like trials. I pray you can see and discern victory where it is. I pray for grace for you when you feel like no one understands your son’s injury and how it affects him and your family. I pray for grace as you look at other neurotypical children in wonder and that you are free from the temptation to compare your son and circumstance with other families. I thank God that He gave you your little boy and no one else. I thank God on your son’s behalf to have been placed in the arms of a mother who will do spiritual battle for him every day along with all of the other physical and practical battles that will come along with his diagnosis. I pray for your confidence that YOU know what is best for your son and the strength to ‘go to bat’ for him over and over again. Strength to you, mama, in Jesus’ name.

By: Julie

Julie — Fri, 12 May 2017 03:28:07 +0000

In reply to Laetitia. Thank you so much!