21 weeks 1 day

This entry feels scatter-brained, so I apologize in advance.

Yesterday was a bit of a rough day. I thought I would be ok and that returning to work would help me keep my mind off everything. But I had a lot of questions from students and from my co-workers.
Having to repeat over and over again that our son has DS and watch their face crumple in sorrow for us was too painful.
Listening to my kids ask me about the baby…it was so precious and innocently asked but brought tears to my eyes.

So I decided to write a letter to my school letting all my peers know what was going on. The reception was much better after that- lots of hugs and reassurance.
And truly, you know what it is? It’s not just a fear of the unknown but a fear of the future. Like, waaaaaay in the future.
Hearing the stories of others helps and hurts.
I have a DS student here and he is not very high functioning…and as soon as others knew our situation, they began to use this student as an example for what my life will be like.
Then, a fellow teacher let me know her sister has DS and is a very successful person. She went to college and functions very well on her own. I so needed to hear that after my long day yesterday.

I hear you, Lord…we don’t know what his life will be like until he gets here. I know that.

We met with a local group last night so we could meet more parents with children who have DS. Apparently the group was very active when the children were younger but now they are growing up and have a dwindling attendance. I don’t think this is the group for us, but the leader mentioned that there are people with younger kiddos she knows that we can connect with.
Anyway, the leader and her husband were in attendance along with their daughter. She is 18 now and a junior in high school. My biggest questions they couldn’t answer- will she go to college? will she drive a car? will she ever live on her own? will she be able to socialize on a higher level?
What I will say is that it was nice to meet her. She is very high functioning, very social and was happy to be there. She does well in school, she is very active in extra curricular activities and does have goals for her life (get married and have children 🙂 ). Her mother pointed out that her daughter has never been made fun of or mentioned being made fun of for DS. It’s been other normal kids stuff, like social faux pas or weight.
She also pointed out how social she is, but that she still functions on a lower level than her peers. For example, she is 18 and a lot of her closer friends are 12/13. She just has more in common with them and does well with that age group. And when those children grow out of her, she grows a little bit herself and moves on to another new friend. It was a relief to see her and talk to another family in person. But it did not take away my fears.

The leader of the group was wonderful, though. She answered all my questions and was so open to sharing her life with us. She also gave us a gift basket for baby, some information/DVD’s on DS and even gave me roses!! 🙂

I can see (to the best of my ability) my life with an infant. I can! But it’s beyond that that is out of focus.

Also…the waves of sadness and fear. I was foolishly hoping the sadness and fear would fade away sooner. I think partly due to the fact that I was safe in my house with my family around me. I can write about this much better than I can speak about it right now. I think I got comfortable with my blog and FB…again, it’s abstract. Then I had to come back to the “real world” and face it all over again.

I normally play classical music for my kids while they are working, but I have needed KSBJ this week. I keep hearing songs about showing the light inside me, being lifted up/carried by God and letting go…I know I need to hear it. And I hope I don’t get in trouble for playing “religious” music in my room, but I just need it right now. I need it to get through my day and remind myself that God does lift me up when I am weak, that He is here in my darkest times and that He has had a plan all along for me and this child.
I do believe that, but I need to hear it too.

BREATHE.

We set up our fetal echo for next week and my awesome team has offered to split my kids up so I can leave early to get down to Houston in enough time. (This doctor doesn’t do echos except for between the hours of 3-4pm T-TH…must be nice!!)
So that will help ease my mind a bit as well.

Keep praying, my friends!!

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22 Replies to “21 weeks 1 day”

  1. Hello!
    It is normal to have fear of the unknown, but the one that walks with you (GOD) is bigger and more powerful that any circumstance. God is control and he has decided to bless you and your husband with a wonderful baby that will be loved unconditionally. He knows your heart, your fears….but never forget that God is still performing miracles…

    Continue taking care of your health, and don’t let other things steal your happiness of being pregnant. We don’t know each other, but I do feel like we do… and i’m keeping you, your husband and the baby in my prayers. Matthew 6:25-34 ; Psalm 135

    Blessings always,
    Yanira Zamorano
    California

  2. You should really meet Corey. He’s a wonderful kid!

    I hope you can find a local group that’ll help you and Barry out. I know support is what you need most right now! Especially from other parents who are in the same situation as you guys are.

    ❤ ❤ ❤

  3. My hubby and I had a chance to go to a conference this fall through the Department of Education. It was for parents of kids on IEPs, so there was a lot of variance in circumstances and what took people there. Anyway, one of the biggest classes we took was on GRIEF. You’ll hear a lot about it- they say that, when your child is diagnosed with any kind of disability, you go through a grieving process. Everyone does it in different ways, and everyone’s process takes different amounts of time. It ebbs and flows- you’ll think you’ve got your feet on the ground, and it sneak-attacks you and comes back. It surprised me how many people didn’t realize that they HAD grieved, or that they WERE grieving, but they couldn’t get past it because they didn’t know.

    In our early days, I remember feeling SO GUILTY for grieving. I hated that I was sad. But then I realized that EVERYONE goes through this process. And that it’s OKAY to grieve. Because you are having to process a path that you didn’t know you were going to have to take. You have to realign your expectations. The “perfect” life you had envisioned is, seemingly, gone (although I’m pretty sure you’ll come to think that your new life is perfect, too, thankyouverymuch.)

    Give yourself a break, and allow yourself to be sad. Frankly, that’s one of the best parts about the prenatal diagnosis- you can get the “sad” out before they get here. And when they’re born, you may still have a lingering nag. But you know that you’ll get your feet back on the ground again. You can’t expect yourself to hear, cope, and accept something so monumental in such a short amount of time. It doesn’t make you a bad mommy. Your acceptance will come with research, knowledge, TIME, and finally, FINALLY holding your little man in your arms. Hang in there- I think you’r’e doing AWESOME!!! 🙂

  4. Grief is TOUGH and so is just processing in general and that part is ongoing. You process the good report on your child’s development but then simultaneously worry he will lose important therapy if he does too well. It’s all an ongoing transition of people and feelings over time but it’s magnified a little brighter when some people you know CANNOT relate and detach or you need to detach.

    So many kids have specific challenges and extra special roles that require a large commitment-you just have less options or choices, but in other ways you have more hopes and dreams than just being a doctor or lawyer (and that’s a GOOD thing to live without those monetary/intellegence driven limits).

    Your questions will continue when he’s born, health and muscle tone and other challenges do not measure a life’s worth or meaning. You may face significant medical challenges and have a musician or olympian in bloom. You and your family will guide this child along with any other you adopt or adopt in utero or give birth to yourself (see IVF/DS blog ’til my head falls off, it happens!). A PhD in parenting and expanded relationships with your family, teachers, therapists, service coordinators and respite (babysitting!!) you might have but that’s okay.

    There are many many accomplished adults with DS and everyone says the therapy is much better now than even ten years ago. The researchers are working on the mitigating issues cognitively and impacting so many other areas etc etc that they say with complete confidence that they WILL DANCE at your child’s wedding and he will drive. Many many kids read and write and function quite independently and have significant and productive jobs

    You already shine a bright light, keep on letting it shine and play calming music or whatever works (light on direct quotes of scripture!!). Even Dr Laura Schelessinger recommends music in the background for families. Music saves me every day when I’m open to listening to it which is 90% of the time!

    Hugs!!

    Try Baby rock is it? They have elevator music without words that is popular songs like Elvis, The Eagles, Bob Marley, The Pixies (very UN-Christian music!!) The Ramones and many others.

  5. I always try to remember that with time, education and experience, nothing seems as big as it did originally.

    You get to be sad and angry and all the things that come with hearing this diagnosis. You get to choose how to present this information and your child to the world. Don’t let the reaction of others taint the excitement of this amazing time. Regardless of where you child will fall with abilities and functioning, they will be the light of you life and you will look back on this time and wonder what you were so scared of.

    As the parent of a 16 year old, I can tell you that at his worst he is more typical than not. Things take a little longer, we have more direct conversations, we work harder for the small things. Its not always easy, some days I want to kill him, or others, or pack up and run away – -but find me a parent who doesn’t….

  6. Another interesting tidbit is that besides often being called emotional beings that teach love, people with DS generally have unique and SUPERIOR social skills. One mom recently described her shy sibling of a child with DS trying to imitate her sister and how it didn’t work cause it wasn’t her personality. The mom said that if they are going to the movies the child (who was 8 yrs old or older) had lots of people to invite and the younger, shy sibling had less choices.

    It’s a unique set of characteristics and medical situations (and sometimes none, yes, only ear tubes!!) for each of us.

    I did read once that the incidence of depression was significantly lower (in males only or maybe it said it was very very uncommon altogether for males with DS) and odds are not too great he will get addicted to drugs. Which increases his chances to be productive member of society right there.

    Hugs and feel the feelings and crazy thoughts and ideas–and your husband and familliy will often think just the oppOsite!! Breathe and communicate as best as you can

    Your letter is great, thanks so so such

  7. Blessed by Beau pointed me in the direction of your blog. Just wanted to stop by and say welcome to the amazing club of parenthood! With the extra bonus of Ds you have the adventure of a lifetime ahead of you!

  8. I had many of these same feelings and thoughts when my daughter was first born. I had no idea how to picture her past the baby stage and into the future, and that was scary. We have a lot of pre-set expectations about children, often based on gender. What sports they will play, activities they will do, careers they will go to college for, marriage, children, etc… It’s hard to erase all those expectations without wanting to replace them with new thoughts about how high-functioning they will be, how they will do in school, how their peers will treat them, what will they be like as adults… I find myself almost stalking teenagers/adults that I see with Down syndrome so I can observe them and try to imagine my daughter at their age!
    What I’m figuring out more every day as a parent, is that one of the greatest joys of parenthood is in the details of your child: the way her eyes sparkle when I laugh at her silliness, or the way she pretends to be a mommy to her baby doll, or when she says her own name proudly looking at herself in the mirror.
    The ‘waves of sadness and fear’ will come and go, but they will fade slowly over time, and I guarantee you they will be covered by waves of love and joy.
    🙂 Megan

    1. Thank you, Megan, I so appreciate it. It’s nice to know that I am not alone in my thoughts. But the more and more I hear positive stories and thoughts, the more positive I feel. 🙂

  9. Another child with Down syndrome was born into a musical family. The mom had decided to start a blog titled Down Came the Rain for weeks says the post, before the baby was born with DS which they did not know until birth.

    http://aaronshust.blogspot.com/2012/01/michael-aaron-our-special-angel.html

    One book that talks about these ‘coincidences’ that many people have and see is Martha Beck’s Expecting Adam.

    I’d recommend browsing or reading Road Map to Holland by Jennifer Graf Groanberg and the Gifts books first

  10. I saw your comment on Aaron Schust’s blog. I work in the music industry and was following comments… I found out my daughter Avery had DS at 17 weeks via amnio in 2007. I was so glad I knew but it came with it’s own set of challenges. The grief is the hardest part. I would cry myself to sleep nearly every night, I would fill my day with the busyness of life and then it would all hit me as I was trying to fall asleep. People were praying so hard for a miracle, and so many people tried to tell me that it could be a misdiagnosis, while I just nodded knowing full and well the accuracy of an amnio… I know how hard it is… If you’d like to contact me here’s my FB https://www.facebook.com/jenstipemouttet Blessings and peace, Jen

    1. Thanks for taking a look at my blog! 🙂
      I have run into the same issue- many of my family members appear supportive but honestly they want to disbelieve the diagnosis. As if ignoring it makes it go away. Maybe that is just how they are dealing with it, but I want them to deal with it now so that when he does get here, we can enjoy him that much more. No sadness or weeping, just joy over his birth. Our son is such a miracle to us!! We are still terrified, but excited at the same time- if that makes any sense. lol

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