{This is me}

First I would just like to tell everyone who reads my blog THANK YOU! I know it is a commitment to read through when it is so long. I probably wouldn’t do it if it wasn’t my story. LOL! Even my husband admits they are looong  🙂    So, Thank you!!! I’m sure this one will be no different.

I was asked this question this morning and thought it was a really good thought provoking question…

“I was just wondering, after all you’ve been through, do you think ultrasounds are a good thing? Do you ever wish it was way back when, before ultrasounds, when a woman just carried her baby to term…and you wouldn’t have had all these months of stress? Because I think about the times the doctors are wrong, and a woman’s joy of pregnancy was ruined by their diagnosis. What’s your opinion?”

I guess my Reader’s Digest answer would be Yes & No, but that doesn’t explain a lot does it. Yes, our ultrasound days are becoming increasingly more difficult because we are not able to see any tangible evidence of a miracle yet. But it was also the ultrasound that has let us know what they think is going on with Jaxton. YES. I do believe ultrasounds are a GOOD THING. A lot of problems can be for seen and maybe even save lives because of the knowledge they provide for the birthing experience.

NO. I don’t wish we were back in time before ultrasounds. I have felt like I know my son in so many more ways than if everything had just been “normal”. I have been able to research and learn all his quirks, but more importantly I have been able to really learn to love him unconditionally and really explore what it means to LOVE. Having the knowledge of Jaxton’s diagnosis obviously was a VERY HARD pill to swallow. We can honestly say that we feel privillaged to have this knowledge. We have been able to pray for him in such a way that we never would have been able to do. I have also had the blessing of being able to prepare for that day both mentally, spiritually and physically. Mentally: obviously by leaning on my trust in God knowing he would be in heaven, but also the shock of it will be less as where some parents are COMPLETELY surprised by the death of their baby. Spiritually: by prayer, fasting, reading the bible and spending time hashing things out with God. Physically: I have been able to get him personalized items that mean a great deal to me such as a Doll with scripture on his tummy, a burial outfit, a baby bunting to wrap him in, a blanket I have been sleeping with for months to wrap him in, etc. I have had the time and knowledge to get personalized items for his delivery too. I feel blessed to have the time to have been able to plan if that moment actually does happen.

I can’t honestly say that it has been months of stress. It has been been ups and downs of heartache. I’d like to equate it to an EKG if you know what I mean! Would you believe me if I said my joy of this pregnancy has even been increased? I have valued every moment and held them even more dear to my heart. Every stage that he gets through is to be celebrated and considered it’s own little miracle. I am honored that each breath the Lord supplies me is helping Jaxton stay alive and each time my heart pumps blood to his he is able to grow.

Job 12:10 “In his hand is the life of every creature and the breath of all mankind.”

I can’t take for granted the little milestones when they are so precious. I guess my joy turns to sadness when we see the ultrasound and there is not the results our family, friends and so many thousands of people have been praying for. BUT then there are times we get to see the 4D and actually see him moving, opening his eyes, reaching for his toes, sucking his thumb, playing with the umbilical cord and smiling!  🙂  How could I ever pass up the opportunity to see that!?!?  On the flip side because of the knowledge the Trisomy 13 being so lethal and basically 0% survival, months ago I had times that I panicked when I hadn’t felt him move in a while. Wondering if today was the day I had been dreading. Here is an example of just one of those days as I documented it with pictures so I’d never forget:

These pictures aren’t pretty I know. But neither are the emotions. It’s real. It’s untamed and undeniable. {This is me}

Yes, I rarely, but sometimes go to bed with a massive migraine because of all the tears I cried. Why would I have tears if I have faith that God will heal him??? 1. Because I am a human with emotions and a Mother who is caring for her unborn son. 2. Because I have not been promised my son. 3. I do not know God’s plan yet.

Thoughts like: Why do I deserve a miracle for MY son to live when other peoples babies die? Why should our family be any different? What if God’s greatest glory comes from his life being cut short? *** I know no one DESERVES a miracle so don’t get all crazy sending me messages about it.   🙂   It’s just thoughts in my feeble little head.

Thanks for the awesome question!

Thank you all for being on this journey with us. I hope to update with new Ultrasound pictures tuesday or wednesday! REMEMBER TO COUNT YOUR BLESSINGS!

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13 responses to this post.

  1. Hey Lisa,
    Keep on writing, sis. I cannot tell you how much I appreciate your updates. I love you and yours, sis. Still praying for God to show up and show off.

    Reply

  2. You are truly amazing! I am so thankful God led you to us!! How my sister and I have been changed by your story and faith!! God is so proud of you Lisa and He has every tear you have cried!! And I am still believing Him for a miracle!!

    Reply

  3. Tears in my eyes….Thank you for your honesty and vulnerability. God bless you in mighty ways.

    Reply

  4. Posted by Nikki on February 7, 2011 at 2:25 am

    Continuing to pray for you and your little man. So inspired by you each time I read your words. Love coming your way from California Friend!

    Reply

  5. Your thoughts have mimicked my own thoughts so much that I feel very connected to you because I have been there..I know what you are going through. You are lucky in that you have been able to keep Jaxton so long..I felt like I was robbed of my time with her. I have often asked myself if I would get an ultrasound with my next pregnancy..I think it does help knowing because that allows us to prepare and love our children even more while we have them because we don’t know how long that will be. Sure..it would have given me less grief to not know, but I might not have survived if I had gone into the hospital that day and not had a clue that something was wrong when they couldn’t find her heartbeat…Praying that you get to spend a lot of time with your precious Jaxton..He is already such a blessing to so many people.

    Reply

  6. Lisa,
    (*I’d love to offer some insight to your readers as they share your trisomy journey. I believe these children all bring with them many Blessings to the families and those who pray for them. You will never know how many lives that are touched and moved to prayer due to your efforts in sharing your story – the amazing gifts these children bring is they Touch HEARTS and bring others to prayer
    !)
    Having experienced the Surprise at birth I’ll share with you my thoughts on this. My child is now 10, living with full trisomy 13.

    Natalia surprised us at birth with her genetic profile. I feel blessed and thankful I did not know. As when she was born she was “wisked off to the NICU and cared for like a typical child.”

    If I might have known prenatally, I may have thought holding her would be the best answer with the information I was given like many of our T13 families. The unknown road before us might have been too much for what we had planned for our family. I could very well have just held her in my arms till she died.. And I do believe she would have if we did nothing.

    However, God had a different plan for us as I did do all the prenatal testing with my other three kids and with this child, Natalia, I opted out. At 40yrs, I was not going to re-live a brief experience that I had with my 2nd child who did have a false positive AFP, that eventually led us to an amnio and the stress of suggestions to terminate if there was a problem. Having been there, done that, I made the choice to allow God to bless us with this new child and all she was meant to be. God obviously had a plan for this child.

    Visually at birth she had a single umbilical artery, frontal lobe fusion, extra digits on her hands, rocker bottom feet, small open sore on the top of her scalp area(commen with t13 kids) & cleft lip. – She was wisked off to NICU…as I laid there thinking and praying.

    Not knowing what was wrong with her, they gave her oxygen, and treated her like a normal baby in the NICU. Later that day I learned she also had a cleft palate, cataracts in both eyes, and an enlarged kidney and a VSD and ASD. (holes in her heart)
    They suspected trisomy 13 and gave me options.. (thankfully, I was given options, to treat or do nothing.) I knew many of the medical conditions they talked about could be treated, individually with medicine or surgeries. They asked me at least three times to sign a DNR which I did not. I spent every possible moment with her while at the hospital thinking she might die at any moment.
    Hanging out in the NICU. (except for shift changes-when I ate) After 11 days we left the NICU for home.

    The first year was extremely difficult, as back in 2000 there really was little (visual) information in the area of survivors. SOFT USA http://www.trisomy.org offered some literature suppport, but at that point they did not share photos on their site, now you’ll see the yearly conventions with many trisomy survivors starting from 2004 http://trisomy.org/photos/

    Natalia was charting our own course. Our trisomy journey went from sharing our story much like you are doing
    in our early years journaling via emails to friends… 2000-2004 http://www.thehealingpowerofprayer.com
    to the LWT13 support site 2004-present http://www.livingwithtrisomy13.org
    There are hundreds of Survivors presently living with trisomy 13 – Patau syndrome
    http://www.livingwithtrisomy13.org/content.php/191-Living-trisomy-13-album
    and hundreds who reached the loving arms of their parents.
    http://www.livingwithtrisomy13.org/content.php/194-treasured-memories-album
    Sadly women are still encouraged to terminate when given a t13 prenatal diagnosis, they’ll never know the sweet blessing of holding their child in their arms.

    While some of these children live briefly, for moments due to their severe medical condition… Not all families who know prenatally are offered medical intervention, In fact, some families have to fight to have medical intervention considered when coming from a prenatal diagnosis. Sadly some Medical Groups/Professionals have decided (or have Ethics Committees) its not worth it to help these kids. “Care Systems” go into play when a t13 diagnosis is given. That is why recently in the last decade you’ll see hundreds of support sites helping families on this journey. While some of the Trisomy 13 kids have some serious heart conditions that are not treatable, in other cases they can be treated as you would a normal child. Its important to look at these kids on a “case-by-case” basis. Without the dx of trisomy 13, would this specific medical condition be treated? Sadly, we are still having families in 2010 told there are no survivors and its lethal.. (“Trisomy 13 being so lethal and basically 0% survival”) That is outdated and misinformation. While the LWT13 site does offer the largest collection of Trisomy 13 stories.. there are even MORE SURVIVORS off the SOFT Global support sites and FACEBOOK Pages LIVING SURVIVORS with t13. You are not alone, yes trisomy 13 is rare, and most Medical Groups and or Professionals who care for these kids will only see one or a few in their Practice lifetime.. But be assured, we are a Strong Support Community Globally.

    Have you seen Josiah’s story, He just turned 13yrs…he is local to us, and also was dx prenatally with
    * Holoprosencephaly
    * Omphalocele
    * Single Umbilical Artery / SUA
    http://www.livingwithtrisomy13.org/entry.php/32-Josiah-Alderson-Born-January-14-1998-Costa-Mesa-California-(CA)-Full-Trisomy-13

    So in answer to your question: :)… If presented with another pregnancy, knowing what I know now. I would not do prenatal testing. At birth, I would be sure we covered all the tests that should be done http://livingwithtrisomy13.org/drtesting.pdf

    Reply

  7. Posted by Just Guillermo on February 7, 2011 at 1:43 pm

    Dearest Lisa, the miracle is already happening and Jaxton is being used by the Lord to touch the minds, hearts and lives of thousands of us that are blessed to know about him. I am personally blessed because God gave me the privilege to know Josh, Jake and you personally and make your pain, sorrow, but above all your faith ours. Thank you for sharing your life so vividly with all, that my dear friend is a gift from God at your expense and we are all grateful for you. We continue to pray, fast and think of you.

    Reply

  8. you know that i am so sad that you are going through all of this, but i know that jaxton has the best mom! you love him so much and that is why you get sad. never be ashamed to show your true self, i prefer the real you!

    i could never change what i did with charlotte, knowing was me caring for her the best why i knew how. i wish that knowing would have somehow changed the outcome, of course, but it at least prepared me for january 8th.

    love you! always keep it real…good, bad, and ugly!!

    xoxo, aims Psalm 40!!

    Reply

  9. Dear Lisa,
    I am so glad you are still updating and with such honestly and realness for all the you are going through. I continue to pray for Jaxton’s healing that it may be God’s plan for Jaxton’s life. I continue to pray for the Lord’s peace to carry you through the coming days. You are getting so close friend… I am shocked at how quickly time has passed since I started following your blog. Praying for each and every day with Jaxton inside of you to be blessed with very special memories.
    Sara

    Reply

  10. Lisa..I love you. I am so proud of you for telling your story and for sharing Jaxton with all of us. I cannot even imagine how you do it. I don’t think I would have the strength. Love you.

    Reply

  11. Posted by Tiffany on February 8, 2011 at 1:05 am

    The lord has been walking with you through this whole pregnancy. I just picture him holding you and your whole family in his arms. Kind of like the “footprints” poem that is so commonly thought of. Bless you and your whole family. God has smiled upon you in ways that not many of us will know simply because of your faith. GOD BLESS YOU

    Reply

  12. Posted by Kimberly Ann Hutchins on February 8, 2011 at 1:39 pm

    Lisa and Josh,
    I pray for you and your family daily, JAX even showed up on our refridgerator magnets the other day when my 3 year old was randomly putting them on it. I truly believe you have given life to an angel and God is so pleased that you could carry and nurture one of his special ones. You have been blessed!

    Reply

  13. I wanted to let you know it’s good to cry. My son was 4 months old when we found out he had HPE and cried so hard that day I could hardly see and breath. I remember sitting in that little doctor office room being told that if our son lived he would never do much. I cried myself to sleep and when I woke up and wanted it to be all a dream. I’m thankful I got 4 months of not knowing anything was wrong with him, glad I never knew while I was pregnant there was anything wrong with him because I got to enjoy his birth. Now 7 years later he has made me who I am today.

    Reply

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