As I sit in this room and reflect on why we are here, I face the flashbacks of seeing our child with pale skin, purple lips and hands, and no pulse or heartrate. One of the hardest longest moments in my entire life. Chad and I sat there doing everything we could to awake her as we waited for the ambulance to arrive. The first time we finally got her breathing was a relief even though her oxygen was 50 and heartrate was 43. She was alive and God was allowing us another second, minute, hour, day, year, or many years to be with her and for her to continue blessing our life.
I have learned through all of our experiences that it could always be worse and to always be thankful for what you have. I try my very best never to complain or feel sorry for myself. Talynn is a blessing and she is here with us, there are some people who no longer have their child. We don’t have time to dwell on all the negatives. If we did then Talynn wouldn’t be where she is today. Our little girl is a fighter, she has faced more in her life then most ever will, her syndrome makes her 1 in trillion, she’s special and perfect! Bohring-Opitz syndrome is not a disability to us, it’s a lifestyle, we will experience unknowns, scare spells, and whatever else for as long as she is here with us and we are okay with that because God has a plan much bigger than we can see.
God has blessed us in so many ways. We have been able to connect with an amazing group of BOS parents that know exactly what we go through and help us no matter how many oceans apart or miles away they are. Our community, friends, family, and God are extraordinary!! They have come together multiple times to help, pray, love, and genuinely care for our family!
When I look in our room, I see a window that shines light in. I look at that light of course wishing we could be on the other side of the window but knowing that no matter how dark our room is , the light can always shine through. Sometimes you just have to step back and accept the light and not let the darkness take over. God is the light! He will shine and help you through. Nothing is too hard for Him! He has helped us through it all and I don’t think I’d be able to do it without His light.
I know my blog is all over the place tonight but I want everyone to know that even though we had the most scariest moment of our lives yesterday, we are blessed because our sweet Tay is still with us and no matter the darkness always try to see the light.
Mommy of BOS 💛💙
#talynnsjourney #bohringopitz #bosawareness
“O Sovereign LORD! You made the heavens and earth by your strong hand and powerful arm. Nothing is too hard for you!”
Jeremiah 32:17 NLT
Posts from Facebook updating everyone on Talynn:
Update 7/14/16 1:00am: Please pray for our sweet Talynn. We can’t answer questions right now but please know we will update when we can. We are at the hospital and should know more in the morning . Talynn is stable and trying to get rest. 💛🙏💙
Update 7/15/16 8:00am: Last night, Talynn had to be taken by ambulance from our home to KD. She had an amazing day yesterday, we went to therapy and her eye appointment. When we got home she took a nap and the nurse and I noticed some congestion. She had a fever so I gave ibuprofen. She woke up and played for a good 2hrs before she fell back asleep. I went to change her into her pjs and she started moving (kinda shivering) , her hands and lips started turning purple/blue, her skin started turning grey. I took her into her bedroom hooked her up to her pulse ox and oxygen. She had coded and flat lined . She had no HR or O2 stats. Chad called the ambulance and we cranked her oxygen and started hitting on her chest . We were able to get a reading of 50 O2 and 43 HR. We continued interventions to wake her. When the ambulance arrived she was in the 90s for O2 and 110HR. He checked her sugar and it was 43. She had a hypoglycemia spell. We aren’t sure why, we know her fever would not go down , she tested positive for a viral infection, and she is fed the same thing everyday. They have been monitoring her sugar and everything looks fine. They do not have any explanation as to why the episode happened and they are thinking we will be going back home today. She’s been sleeping peacefully. Thank you all for the continued prayers, we appreciate all of the love and support! We will keep updates as we get them. 💙💛
Update 7/15/16 8:00pm: Talynn is staying tonight so she can have an EEG done. We are not sure why she coded and we may never know . She is doing fine. She’s resting and her fever has gone down. As long as nothing major changes we should be going home tomorrow. Thanks for the continued love, support, and prayers. 💙💛
2 thoughts on “The Window of Light”
I know you are out now, but I wanted to let you know that we have been thinking about you and Tay and are praying for you. Thank you for all that you have done to craft a community of support and love for us. It is an amazing source of comfort just to know you are all there. That there are those that understand. It is hard to express how much that means after seven years of not having it and struggling through alone.
Thank you, and may the Lord bless you and yours.
Thank you so much Julie! We are beyond blessed to have you all as our BOS family! I cannot imagine going 7 years undiagnosed but I am hoping by raising awareness we can help those so they do not have to wait so long. Have a blessed day. We look forward to seeing you all in September .