{21 weeks} A diagnosis…

trisomy_13_journey_1I woke up this morning desperately hoping that yesterday was just a dream.. that none of it had really happened.  But it had.

We were expecting our test results today, and were hoping it would just be a phone call.  All of my defenses were in place.  I had dinner and shopping planned with a friend for last night, and today my sister was set to arrive early to hang out and be here when my phone rang.  I was prepared in every way I could be.  I would be strong when the phone rang, I would be ready.

But then the call came yesterday.  Silly me, I should have learned by now that there are no defenses for that phone call.  On top of the call coming early, they did not want to share our results over the phone.. they needed us to come in.  Which of course was enough information to know that they certainly didn’t need us to drive to Fort Wayne to tell us that our little boy was perfectly healthy.  6 hours of anxiety followed.

Here we are, back in the sterile tissue box room.  The specialist walked in with a folder that held all of our answers.  We didn’t really need the folder, her face said it all.  “I’m sure you had a hunch that this news was not good…”

Our little boy tested positive for Trisomy 13. 

After asking every question I had prepared myself to ask if those were indeed the results, I needed out of that sterile room.  There was not enough air for my empty lungs.  I couldn’t take one more pregnant belly walking past me, hand in hand with their partner, smiling.  The physical pain that filled my heart and is still today residing there was as real as the results on that paper.  I can’t breathe… I can’t breathe… I can’t breathe…

This is so hard to even type out, and quite honestly I don’t have many words at the moment.  All I know it this, love gives you a crazy kind of brave.  In this very moment, we are trying to catch our breath.  We are trying to find our feet.  We are trying to soak up and celebrate this pregnancy because as painful as this is, it may be our only opportunity to know our little boy in this life.  Tomorrow is not promised, so we are thankful for today.  Our faith and hope is not shaken, this boy is here for a reason.  A reason we may never understand, but whatever it is, God trusted us with this fragile life.  We are thankful for every kick, every roll.  Tell us who you are, sweet boy.  We are listening. 




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24 Responses to {21 weeks} A diagnosis…

  1. Amber says:

    Although I don’t know you Shan I have cried and prayed for you and your baby boy since reading your last post. I have 3 little boys of my own. My youngest is only 4 months old. I am amazed at your strength and your faith. Thank you for sharing your story. I have looked at life so much differently since reading about your journey. You are right that today if a gift and tomorrow is no guarantee. Stay strong.

  2. Aunt Sandy says:

    I wish there were some magic words I could say that would make all your bad, sad news turn into something wonderful. I can only tell you to cherish every second you have with your sweet baby boy. I know I have a free questions I would like to ask Jaime someday, you are never ready for your child to leave you. God grant you peace and wisdom through your journey. You have my heart.

  3. Patricia Haas says:

    To my Beautiful granddaughter. I am so very sorry to hear the news. I know how hard it is to go through this as we did so many years ago. I pray that God will comfort you through this difficult time. We no not the reason why these things happen in our lives. I have put you on 2 different prayer chains. Wish I was there to give you hugs.
    Love you so much ,Grams

  4. Shelley says:

    Thank you for your honesty, your courage to share, your unconditional love. Prayers continue. <3

  5. Frances says:

    I am old now and have learned that everything happens for a reason, even bad things, and that every little baby comes with a blessing. You will find the strength you need as you move from day to day and you will receive the grace you need to face whatever needs to be faced. Love and happiness will also be part of your days, often sprouting from unexpected places. Bless you and your family.

  6. Heidi Smith says:

    Many, many prayers for your family.

    • Heidi Smith says:

      I am sure the geneticist likely gave you some support information but if you are interested there is a facebook group kept very privately for families with Trisomy 13 and 18 diagnosis’. There is also a support called SOFT. This is a fragile state to be in, I was there and our daughter’s outcome wasn’t Trisomy but she does have a chromosomal deletion and some other issues. I don’t know you but we have been praying since we came across your previous blog. “Tell us who you are sweet boy. We are listening.” – Made me cry.

  7. Jodi says:

    I am so sorry. You are so brave for telling your story. I am praying for your family.

  8. Georgene Brown says:

    My prayers are lifting you up! One thing I know for sure is that your son is very blessed to have you as his mother. He will be beautiful and wonderful and my hope is that many others see your faith and admire it like I do.

  9. Wendy says:

    Know that we too are praying for you and your family. Xxo

  10. Suzanne says:

    My heart crys out for you. You are in our prayers.

  11. Sharon Alexander says:

    Love and prayers for you and Stickey. I know there are no words that could possibly help you at this time. Just know you are loved here and from above.

    • prettyplainjanes says:

      Thank you for your comment Sharon! This is actually for Shan’s little boy. Your kind words are very much appreciated though! All this love and support means so much to this sweet family! xo, brandy j

    • Sharon Alexander says:

      So sorry…thought Brandy had posted. Will keep you in my prayers.

  12. Katie says:

    I’m so sorry. there are no words to provide enough comfort or healing. My family and our life group from church have been praying for you and baby since we heard. We will continue to do so.

  13. Jeneane Casebere says:

    Shannon i have been praying for you all since I heard of your precious little baby boy…words can not express how much my heart breaks for you, your husband and your entire family..Continued prayers and May God Bless You All

  14. Julie says:

    Shannon, you are a beautiful soul. You are so brave to share your feelings and thoughts! I am praying for you and your precious little boy, as well as the rest of your family! Your faith will endure you through this battle and you will come out stronger! Bless you!

  15. Rebecca Adams says:

    Shannon and family …thinking of u all. My heart aches for you and your family. Know that many are thinking and praying for u. You are beautiful lady…inside and out. Be brave. Be strong. Accept the support of others. I am here as a ‘doctor’ friend if you need someone to research for you or to help in any way. With luv…becca Adams

  16. Vic says:

    Shannon and Josh we are sending you more hugs. Know that you all are in our thoughts and prayers. Remember ~ keep walking by that faith and not by sight.
    Vic & Dennis

    • Beth Hallman says:

      May the coming days bring you and your family strength. From your post I can already see this family has the love needed to be the parents of this special little boy. One of my best friends has a child with Downs Syndrome and he is now in his 20 ‘ s and has been the biggest joy and challenge (at times) in her life. My prayers for you are that he is healthy and when you finally hold him in your arms you feel peace knowing God has loaned him to you because he knows the love in your hearts. Be blessed.

  17. Amanda says:

    I don’t know you but I have said many prayers for you. I have not been through what you are experiencing but I have a friend who was told her unborn daughter would have Down’s syndrome. Her doctor recommended ending the pregnancy, she did not. Her daughter has absolutely nothing wrong with her. My prayer for you is that no matter the outcome, you and your husband accept whatever God has planned and know He chose you to have this journey for a reason.

  18. Malissa Hale says:

    My heart truely aches for You and your family. I have lost a sibling to this and I can truely say I know how you are feeling….. To sit and read your update was heart wrenching and brings back tears to my eyes. I know this will not help you now bc the overwhelming feelings that r tied up in this but my sister lived 46 hrs off the vent and passed quietly in our arms I was devastated at the effect it had on my life even to this day. But My mom was fixed the day before she lost our angel and 8 months later guess what??? she was pregnant w my perfect baby brother who is perfectly healthy. the doctors all said they have no clue how she got pregnant but here he was… I know it is awful now but this is a life lesson to grow from and I wish you the best and if there may come a time you need to talk I have an open door. look me up on facebook or email me! God Bless 🙂

  19. Nancy Harting says:

    Shan, Josh, and Addelynn and baby boy Maxy you are a beautiful family. Baby Maxey is in God’s hands. I sit here with tears. tears and tears. I can not write anymore because of tears. I am sorry. I have been praying for our little one since I heard of his life. Still praying. Love all of you, Grandma Harting

  20. Julie says:

    Praying for you and your family. May God wrap you in His arms and give you comfort, peace and strength.