In a month our region will host its annual Williams Syndrome Association walk. This will be our first year to attend and boy what a year it’s been!
Our online support groups are phenomenal but these events let us meet other families like us face to face. I can’t wait to meet some of the beautiful souls that our village has consisted of ❤️
If you would like to join Baby Owen’s team that day, please follow the link and register. If you cannot join us, please consider making a donation for research to The Williams Syndrome Association.
God, thank you for all the blessings this week. Thank you for blessing us with Baby Owen even though sometimes we don’t appreciate that. I ask that you watch over the families and friends that will be participating at this year’s walk. I thank you for this last year 💙💚
We’ve spent the last couple of days together. All day. Every day.
Coming back home and trying to find a new normal has been time consuming but we will get there.
I’ve enjoyed being lazy with my family watching movies, laying in bed, taking naps, playing with Baby Owen, running errands together, doing minimal cooking and just sharing hugs & kisses. It’s a nice way to enjoy spring break ❤️
God, thank you for my family. Thank you for always keeping us safe. I ask that you continue to heal and strengthen Baby Owen. I ask that you always take care of Emma and let her know she is loved. I ask that you continuously have my husband and our marriage in your hands. Please let this be the beginning of something more beautiful 💙💚
My husband was found today. Safe. Broken. Sad. Alone. I’ve never seen him like this.
During the last 24 hours, I’ve had several Williams Syndrome families reach out to me and share their own experiences with their marriage. A child like Baby Owen is very time consuming, life changing, earth shattering, exhausting that many marriages are never the same. Baby Owen has had an extra dose of excitement for his lifetime.
On that note, I don’t believe in divorce. Not as in an easy way out. I believe in trying, in fighting, in working on it. So, now that we are back from our adventures in California I will work on healing our family and my marriage. I’m sure it won’t be easy but I’d rather go down fighting than wonder what if’s. Baby Owen and Emma deserve it.
God, I thank you with all my heart that my husband was found safe. As the days progressed, every worst possible scenario began to play in my head. The devil is a liar and he has already tried to rock our family with Baby Owen and has failed tremendously. He will not have my marriage next. I rebuke Satan from our lives, he is not welcomed here – EVER. I ask that you please heal my husband in any and every way that he needs. I ask that you give me strength to fight for our marriage and our family. I ask that you remove all obstacles (wether human or not) from making us the happy, complete family we deserve to be. And I ask that you guide us and open and close every door that will get us there 💙💚
Baby Owen’s first year of life has been mentally, physically and emotionally exhausting for everyone. Especially for my husband and I.
From day one, Baby Owen hit the ground running with an eventful c-section. From there it just continued to spiral until our most recent hospitalization.
We arrived back in Texas on Monday. My husband left Thursday night and never returned.
Of course, we’ve had our share of differences in the past but Thursday nothing was out of the ordinary. It has now been 72 hours seen I last laid eyes on him. Since I didn’t say “I love you.”
I reported him missing yesterday at the request of his family. My husband has been listed on the missing persons directory and our vehicle has been flagged.
As the days go by I’m feeling more and more emotions. At the beginning I felt angry; angry for leaving without looking back. Angry for leaving me with our recently operated son and all his medicines and all his trauma. Anger turned into hurt. Hurt for not caring enough to stay and fight with me. Hurt turned into worry. Worry that something is wrong or he’s not okay. Worry has turned into blame. Blaming myself for not being there for my husband like i should have been. Blame for not stopping him that night 💔
God, I’m asking you tonight to please help us find my husband or please make him come back home. I’m asking that he’s safe and alive and well. I’m asking that you be there for him even though he’s never looked for you. I’m asking that you heal whatever is broken inside of him. I’m asking that you heal his soul, as well as mine 💙💚
We hit the ground running as soon as we came back to Texas.
Baby Owen had a re-evaluation with his physical therapist on Wednesday. The goal is to get him where he was and then push from there. However, while he’s still on sternal precautions there’s only so much they can work on until then. But it will give our tiny warrior a chance to get used to seeing her weekly as his routine for now.
On Wednesday we had an appointment with Baby Owen’s Cardiologist. He ordered the works!! EKG, echo, and x-ray. EKG was better than the one that freaked everyone out a couple of days before discharge. Cardiologist thinks it might have just been an electrolyte imbalance from all the diuretics. Echo was amazing compared to the previous one before surgery. Our Echo technician said she wanted to shake this man’s hand! She’s been following Baby Owen his whole life so she’s seen the ugly 🥺 X-ray was unchanged which is good to hear as well!
Our appointment started at 1:30 and we left at 5:30. Of course we took time with the scans but the rest was talking with Baby Owen’s cardiologist about his medications, the plan ahead and what we need to do for Owen now. I am extremely grateful for him ❤️
As each day passes our tiny superhero is a little better every day. That’s all we can ask for.
God, please continue to heal, strengthen, and calm Baby Owen. I ask that you please also heal and strengthen my family who has been through such a tremendous event in our lives. Please watch over us as we push forward every day 💙💚
We’ve been back home 48 hours. They’ve consisted of unpacking, cleaning, grocery shopping, paying bills, physical therapy evaluations and trying to have a somewhat normal routine until we all get situated.
It’s also consisted of Baby Owen crying, and crying, and crying, and crying, and crying, and crying, and crying, and crying, and crying, and crying, AND CRYING 😔 He rarely sleeps and even when he does he wakes up crying and looking frantically around. When our tiny warrior is awake he wants to be held. Sadly, I think it’s some type of PTSD. We’ll ask our cardiologist tomorrow during our appointment.
On that note, we haven’t had much sleep. Maybe 4 hours max as my husband and I try to help each other with Baby Owen. Sometimes we can’t even calm him down. I’ve talked to other moms with children that have undergone open heart procedures and they describe the same actions afterwards… and that they last SEVERAL months 😳 However, they also say their sweet babies didn’t go through quite as much our handsome did. So, who knows 💔
God, please give Owen peace and comfort. Please erase whatever haunts him when he closes his eyes. Please give us the tools to be there for him like he needs us to be. I also ask that you give my family strength to push through the hard days knowing what lies for us at the end – a better life for Baby Owen 💙💚