I had it all planned out.
The nurse would call. I’d fall to my knees as tears of joy streamed down my face. The weight would lift.
Christmas would be a time of glorious celebration, full of thankfulness and family.
I’d write a happy post about all the lovely things God taught us during this year of waiting.
His birthmark would always be this visual reminder to me of what could have been.
Except what could have been, is.
My son has Sturge Weber Syndrome.
A Diagnosis
It was the doctor that called.
I tried to tell myself that it was him calling because I had left an impatient message on his machine earlier in the day. He told me that the MRI revealed four lesions on our little boy’s brain. These lesions will eventually bleed and cause seizures and possibly strokes.
Sturge Weber Syndrome looks different with every individual and it’s so rare that there doesn’t seem to be two doctors that agree on anything.
Some children have so many seizures and strokes that they need to have the halves of their brain separated to even survive. Some never walk and talk. Some have debilitating migraines, some go blind, most have learning disabilities.
And every milestone they achieve can be taken away at any moment by another seizure or stroke. It’s progressive and it’s vicious.
We’re left with no cure and no clue.
(Photo credit Kelly Wendt)
A Dream
I’ve been writing a journal to each of my boys since before their conception.
(Alright, alright. Our middle son was a surprise, so I had to play a little catch up in his journal!)
In them, I share my hopes, dreams and prayers for each child, as well as sweet moments that I want to treasure forever.
Because of my son’s birthmark, I knew he would know what it’s like to be different, to be judge, and unfortunately, to feel rejected. But I’ve always prayed that God would use that pain to draw T. J. to the unconditional love of Jesus. And that he would, in turn, share that love in tangible ways with others.
I pictured him caring for the outcasts, serving the lowly, touching the untouchables. I pictured him as a man of unassailable character that wouldn’t be afraid of what others thought or care if anyone took notice his efforts. I pictured him and his future wife raising a family of compassionate children that would turn the world on its head.
I didn’t picture him with Sturge Weber syndrome.
And even now, I still can’t. Maybe it’s denial, but mostly it’s because I just don’t know WHAT to grieve over.
It’s so weird to have no idea if my son will ever be able to have a conversation with me. And to know that all the abilities he does have could be snatched away without warning. Everything is so fragile and fleeting.
An Advent
This all happened the week before Christmas.
Our Christmas was not jolly or magical or merry.
When we first found out that SWS was a possibility a year ago, I wrote about my struggle to trust God’s goodness, no matter the outcome.
(T.J. less than three minutes old.)
I was trying to hold fast to the truth that God has entered into a covenant with me, one that promises to work everything out for my good.
Not the kind of “good” that promises an easy, pain-free life.
I knew that. But I knew that even when tragedy strikes, as a child of God, that that circumstance is truly what was best. I didn’t know how that all worked out, but I was willing to rest in that paradox.
Well, here we are.
Our hearts are broken. The tears flow freely, even in the Target parking lot. I wake up countless times a night with the ice cold terror of the unknown.
So is this good? When the doctor called, did we get “good” news.
Here’s why I say, with trembling lips, “YES”.
Because God is with me. He is so very present with me in this pain. He is not far off. He is not a theory, an idea, a religion.
He is my God, my Father, my Savior, my Friend. And he’s here.
Christmas was a celebration that God is with us. He left perfection and peace to enter into the hell that is this life. His advent, his coming, is the only reason my family has hope. And we long for his second advent when he makes all things new.
The psalmist had a similar crisis of heart in Psalm 73. He raged that evil people seemed to have nothing but happiness while folks of character suffered through life. The unasked question is, “Is God really good to me?”
Eventually Asaph declares,
23 Yet I am always with you;
you hold me by my right hand.
24 You guide me with your counsel,
and afterward you will take me into glory.
25 Whom have I in heaven but you?
And earth has nothing I desire besides you.
26 My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.
27 Those who are far from you will perish;
you destroy all who are unfaithful to you.
28 But as for me, it is good to be near God.
I have made the Sovereign Lord my refuge;
I will tell of all your deeds.
So as I sit here with a life that has been turned upside down, the only sense I can make out of it is this.
His nearness to us, is our GOOD.
The Future
Ha! The future.
I don’t even know if we’ll make it through the day without a stroke that could take my son from me.
I really don’t know much.
I know two things.
I know life is going to be hard. And I know God is with me and my whole family.
He will be with me when I helplessly watch my son convulse on the floor.
He will be with me as I watch T.J. struggle through physical therapy and school tasks.
He will be with me as I battle insurance companies and nurses and mounting medical bills.
He will be with me as I feel crushed with guilt over giving all three of my sons the attention and love they crave.
He will be with me as T.J. goes through all the normal pains of teenagerhood compounded by the anguish of mental and physical disabilities.
He will be with me when I go through the gut wrenching task of choosing someone to care for T.J. when I no longer have the ability. (Pray I live to be 99 and one of those marathon runners.)
The nearness of God is my good. And he will be more near to me in this life of hardship than any other path that could have unfolded. Our whole family will experience the presence of Christ more. And even though I had other plans that I thought were wonderful and good, I will choose to be joyful about God’s best plan for our good.
He has it all planned out.
Want to BE the GOOD?
As we go to tons of doctors and try and formulate a medical strategy, we’ve mostly been told that we have to wait and see.
Well, I don’t want to sit around doing nothing. When I’m hurting, I’ve been taught to serve those that are hurting more than I am.
So that’s what we’re going to do, TOGETHER!
I’ve started a GoFundMe campaign to provide a lifesaving surgery for a child in poverty overseas. I’d be so honored if you prayed for this precious child and donated a couple bucks. Share this post to get the word out!
Suzanne O'Mullan says
I feel the need to comment – you will have dreams for your son – you will make new ones – he was put here for a purpose – he will help you find the purpose …. I have been told that there is no measurement for the heart – you can measure inches and pounds and calculate ions and such – but there is no measurement for the heart – my son is that measurement … he is able to measure the size of ones heart by how they treat him! xoxoxo Much love to you on your path. Happy New Year
Julie says
Thank you!
Charon says
Whoa, just when we think our own personal struggles are overpowering, God shows us differently.
Please know I will pray for you and your family, as you continue to trust in God, with a very uncertain future. Cherish and live in the moment, as that is all we are certain of. We have to leave the future, as God has it written for each of us, in His hands.
All sufficient God,
CAP
Julie says
Thank you for your prayers! We need them!
Benita Yocum says
Julie…with God in your life you will celebrate! Every new skill (or re-learned for the 100th time skill) will be celebrated. Every doctor that “gets it” will be celebrated. Every memory (even through the tears they bring with them) you will celebrate. My precious gift is now 8. He had his first seizure at 3. He has lost so many skill sets along the way that we have fought to relearn/reteach. With each seizure I hold my breath…paralyzed with fear. Then I remember that God is with us and for us and my faith is in Him. Whatever this life hands us…we will celebrate. For God gave us this day, right?! Your family is in my prayers as I know oh so well how heavy a burden “unknown” can be.
Julie says
Benita, does your son also have SWS? It is so good to know we’re not the only ones that know this fear. I mean, I wish you didn’t know from experience of course, but having each other is a gift. I’m going to send you an email. Love, Julie
Ann Duval says
Julie and Andrew. I am teary eyed reading this because I agree with your commitment to God,marriage, family and parenthood in that order. You are a shining light in this world that is so needed. You still will be, just not the way I expected it to be. I want to join you in praying for TJ and this blog lays out exactly how to pray for your whole family as well. I will be following this blog to watch for other ways to support you. Keep that in mind as you write. 🙂 Love from the Duvals
Julie says
Thank you Ann. Those prayers are what we need right now!
Dara watson says
Thank you for this article. I really appreciate your outlook on this new and overwhelming life change that you are going through. I want to encourage you to continue this and take everything day by day even when the temptation is there to constantly look towards the unknown future. Count each moment with your son as precious even when it’s only a “little” thing he accomplishes. My son has a disability that, though it is not life threatening, does limit him and we have no idea what he will be able to do in the future or how much he won’t be able to do. It has been so easy to get caught up in what he can’t do and what he might not be able to do that we have to make a concerted effort to focus on what he can do and what he is accomplishing. Today, at the age of fifteen, he was able to button his own jeans without help and so we celebrated. Mostly, I want to encourage you that GOD IS GOOD! He gives so abundantly and graciously at all times. I will be praying for you and your family. God will give you so much through this situation. All my love and prayers.
Julie says
Dara, I love your perspective as well! Praise God for our precious sons! Your words have meant a lot to me, thank you!
Melissa says
What a moving article. Thanks for sharing so much love in those words.
I wanted to share with you a website that I use with my family. http://www.micheleodonnell.com/ at Living Beyond Disease
Michele leads what I call a miracle center. She is a nurse and minister who helps families create miracles. She did for our family and several friends. She is Bible based and her clinic is amazing. Her bible based retreat is coming in February. All I can say is she is able to show the undeniable power of God to parents and individuals to bring about miracles. I work in health care myself and I have seen it done with my own eyes.
She has two daughters, and when one of them was born she was told she would die. Because Michele had nothing but hope and God she dove into the Grace of God and would not believe in anything but light and love being brought forth in her child. Her daughter is now the attorney general of Texas.
I encourage you to take a closer look at her site and even visit her on retreat. I have gone several years and it is beyond encouraging. Great hope exists and it will rise up!
Many blessings and miracles.
Julie says
Melissa, thank you for your heart behind this comment. I really appreciate it! I fully believe that God can do miracles. Sometimes it’s through healing, sometimes it’s through sustaining us through crushing pain. He is always good!
sally jo winebrenner says
Dear one, some of us are asked to bear what might seem like unbearable burdens. Through one, I have come to know the Savior in ways that I might not have without the challenge. I would like to send you a personal message if you would allow me to. Still following and receiving inspiration from a very loving Heavenly Father. Love to you and yours, Sally Jo
Julie says
Hi Sally Jo, thank you so much! Of course, my email address is julie@mymundaneandmiraculouslife.com
Elissa says
Ohmygoodness, I have goosebumps.
This is a beautiful testimony to God in the midst of difficult, gut-wrenching, terrible awful pain. I’m so so sorry, because I know this cannot be a fun place to be.
I pray that God will give you clear, visible hope. I pray that you will receive supernatural strength as you walk these weeks ahead. I pray that you would know this hurts so much because you love so deeply.
xoxoxox
Julie says
Oh Elissa, thank you. Seriously, thank you!
Korene says
Good evening Julie. You have blessed me so with your blog post. I look forward to reading many more. The LORD lead me to your site while I was searching for easy French bread. I don’t believe we meet anyone by chance. I will be lifting you and your family up before the LORD JESUS CHRIST. SHALOM
Julie says
How cool is that! God definitely brought you here for a reason. Thank you for the prayers!
Yasmin says
Oh my god, I m crying while trying to type this. We got our baby s diagnosis around Christmas ( he has a genetic liver disease) and I was really angry at God. And though i m not Christian your words were kind of a wake up call for me. Thank you so much for sharing.
I prayingfor your family and mine.
Julie says
Yasmin, ugh, that really really hurts to hear of your sons illness. I’m so sorry and totally understand that anger. Please feel free to converse with my privately via email. julie@mymundaneandmiraculouslife.com I’m all ears. No easy answer. Love from one hurting mom to another, Julie
Elizabeth says
Dear Julie, my heart is breaking for you and your little boy! These dear ones that we would do anything for and want to hold so closely because of our love for them! About two years ago we watched our own little baby (5 months at the time) nearly die from an unusual and rare disease. During the days of the unknown, the Lord spoke to my heart in those dark days too. When I wanted to hold her tightly and make the plan, God said, open up those tight hands, I love her and you, she belongs to me, and I have a better plan, you can trust me, I am good! So so hard to learn to keep my hands open before the Lord with my kids, and yet a huge place of rest for my heart too. I love the beautiful work God is doing in your heart as He walks down this road with you! Psalm 46:1 comes to mind, “God is our refuge and strength, a very present help in times of trouble.” I will pray for strength for you in the moment by moment trusting :).
Julie says
Elizabeth, thank you for your kind words! The image of open hands is often on my mind too!
Laetitia says
I just want to send you and your family lots of love and courage! Keep on being such a great loving mum!
Julie says
Thank you so much!
Candace says
Maybe cranial osteopathy might help. Also “A More Excellent Way” is a good read.
Sierra says
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.
Julie says
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!
Anne Miller says
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.
Julie says
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.
Abraham Teclu Gebreslassie says
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
Amanda Conklin says
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.
Julie says
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!