In the hopes of boosting the twins’ lung development I had my second dose of steroids today. Side Effects of Steroids so far?
1) Hot Flashes
2) Insomnia (I literally can’t even relax) (and therefore have far more time to “think” than I would like)
3) Some new fight in my veins
Well, I’m doing it again. Inch by inch I’m climbing my way back up a hopeful ladder. Part of me knows I shouldn’t. I know we have concerns about Nolan even surviving until birth. I know we have concerns about how their little bodies will respond when I’m no longer keeping them going. I know we have concerns about their brains being able to communicate to their organs effectively, about motor function and cognitive ability, about visual and hearing impairments. About life. I know. Trust me, I…know…
And I’ve spent far more time the last 36 hours thinking about what we would do if we lost one or both boys than I ever wanted to.
But I’ve also been searching hard for someone who had Dandy Walker AND Lissencephaly. And I found him. He may be an exception, but he exists. His a beautiful little boy with a bright smile. His journey hasn’t been easy, but he’s now four months old. He’s little, he’s behind, but he’s a fighter, and he’s making progress. And he’s bringing unending joy to his family.
Someone else out there shouldn’t be…but is.
I know I may be setting myself up for devastation again, but are you ever really mentally prepared for worst case scenarios? And if the answer is no, is there ever a good reason to accept them early? I think for now, it is more important that I have some authentic hope left in me. That I pump that hopeful blood through these boys. That they feel that their mama hasn’t given up, and that they take a little bit of that hope and fight and keep it with them even after we’re separated.
Keep fighting boys…mama’s got your back.
Mama Laughs 
And besides Mama and Daddy, our boys have GGPop and GGNan. BUT..best of all.. our boys have God and the BEST support group ever..they have a HUGE, LOVING FAMILY!!!! Love you, Nan
Did you see the you tube video of Malachi at almost 3 years old? You’re amazing and you will overcome anything life throws your way – anything!
I know one thing for sure….. Nolan and Landon and Karson sure have a GREAT mama!!!
Nothing new do I have to say…..just DITTO on everything that has been said! I enjoy reading you enter thoughts and feelings. Sometimes I have to stop until my tears clear. It is so wonderful to see the response and encouragement from your friends and families. May God continue to give you ALL strength….He knows what you are able to handle, it is hard sometimes, but He knows…. Sorry so long……. 🙂
Love and prayers.
We got their back too!!! Love you!!!
I’m so sorry for all you are facing. I was recently informed about everything from my dad. My name is Holly and I am Vice President of Sufficient Grace Ministries. (www.sufficientgraceministries.org)
We offer prenatal hospice and bereavement services for families. From what I have read, it sounds like drs aren’t sure what they outcome may be. I sincerely hope you have no need for us but I would like to offer you our services and support. You can email me at caring4carleigh@yahoo.com and I can give you more info and answer questions. I hope to hear from you. I’ll be praying for you and your babies.
Your family and you have been on my mind for the last few months. I pray for you all and hope you have the best possible outcome with your precious little boys. No matter the outcome, the Lord will give you strength. The most important thing is to cherish the time you have with your boys and show them as much love as you possibly can.
I envy your Fight!
I should probably change that to I admire your Fight. Your strength and ability to write this blog amazes me….Your boys are very lucky to have you in their corner.
You don’t know us (Justin might know who we are) but we are family friends of the Strawns in WV. We’ve been praying for you and your sweet babies. This evening at dinner, our four year old prayed: “Thank you for the baby twins who are sick in someone’s belly.” He often mixes up “help” and “thank you” in his prayers, but I couldn’t help but think that God has a purpose for your boys no matter the ultimate outcome. I pray that someone who meets you, your family, or your sweet boys during this journey will be saved because of their story. We will continue to pray for the ‘twin babies in someone’s belly…’
Thinking about you and your family, and these beautiful baby boys that will be entering the world. You are in my thoughts and prayers daily, as I know God has it all under control.
You are amazing! Continued prayers for the Rinkers – God still performs miracles. It seems that you are open and waiting for that miracle – even if it is not the miracle we pray for. Your faith and strength are inspirational!!