What’s going on

I’ve been thinking about starting a blog for a long time, mostly because I think I have a lot of funny things to say that I’m sure you’re all dying to hear ;-).  I assume I’ll do some post about my profession, about random things I love (wine, the Cyclones, Harry Potter), about recipes I find on Pinterest that are actually delicious.  But what I think I’ll talk about mostly, is my sweet baby girl Teagan.

News of what is going on with our daughter is becoming more known by those close to us, but Joel and I feel it is time to just put it out there.  It’s a difficult decision to make, not because I’m embarrassed or afraid to talk about it, but because I don’t want her to be put in a category and I don’t want anyone to put limits on her.  We have no way of knowing what she is capable of, and I already know that she is, and will continue to be, amazing.

We attended a networking event put on by Children’s Hospitals of Minnesota’s Genetics Department today.  We sat at a table with other parents who had the same fears, feelings of “it’s not fair,” and strong love for their childen that we do – they are who inspired me to post this today.

So for my first post…this is an email I wrote to close friends of mine some months ago now to tell them what was going on.  It was hard enough to write the first time, I’m going to take the easy way out and just paste it here ;-).  Soon I’ll follow up with Teagan’s progress, as a lot has changed since then.  Thanks for reading 🙂

Hi gals,

I have some news to share with you.  I’m sorry for doing this over email, but the thought of having this conversation on the phone multiple times was too much, and MN girls, the next time I’ll see you is at our girls night in a few weeks, and I want that to be fun, not overshadowed by bad news.
We’ve found out what is going on with Teagan, and it isn’t good.  After multiple tests, MRIs, MRVs, EEGs, ABCs, 123s, her neurologist decided we should do genetic testing.  So they took a blood sample, and there we found the culprit.  She has trisomy 12p – for those of you who aren’t nurses, it’s a chromosomal abnormality.  Sometime shortly after conception, when all the cells that make up Teagan were multiplying rapidly, there was an error in one.  From what I understand, it isn’t rare for a cell to have an error, but normally the body gets rid of it.  Teagan’s didn’t, so the bad cell started multiplying along with all the rest of them.  So on the 12th chromosome of some of her cells, the short arm (p) is duplicated and flipped upside-down.  Since it is only in some of her cells, not all, it’s called the mosaic form.
Down syndrome is a chromosomal abnormality that is more common, this one is super rare.  One in 50,000 births.  Only 150 or so have been medically documented.  Of the documented cases, some can talk, some can’t.  Some can go to the bathroom on their own, some can’t.  None of them live independently.  It remains to be seen if she’ll start regular school (I have high hopes for this).  A lot of them have seizures, so we’re on close watch for that till she’s seven – but we had an EEG last week, and it looked good.  A lot of them have heart or other organ problems as well – we had an ultrasound and heart ecco (?) done two weeks ago, and that was good too.
So how she’s doing now…because of her difficult birth, we were watching her very closely for cerebral palsy.  Because of that, we caught this much earlier than we would have otherwise – and we’ve been doing therapy with her since we found out she had low tone at her NICU follow-up clinic when she was five months old.  We found out with the MRI that her brain is fine – the small part that we saw on the MRI before she left the hospital when she was born is gone, it healed itself, like the doctors were hoping it would.  Anyway – we do physical therapy, occupational therapy, and special education through the school district weekly on a rotating basis, and physical therapy through Children’s hospital weekly.  So every week she has at least two therapy sessions.  Shortly here we’ll probably start occupational through Children’s as well, and speech therapy when she’s closer to two.  She makes quite a bit of noise, nanas and mamas, and gets taking turns with making noise – so I have high hopes for speech too.  My dream is that she is able to go to college.  And the therapy is going well – on Friday her special education teacher was out, and we were going over the 15 or so goals we’d set for her at the beginning of therapy, because her next assessment is coming up in early November.  Of the 15, which range across physical, occupational, cognitive  and communicative, there is only one she hasn’t already reached – crawling, which is hard because of her low tone – and she is getting close.
So how are Joel and I doing…we’re coping.  To put it bluntly, we are living a nightmare – every parent’s nightmare.  There were a good two weeks or so where I was in a really dark place, darker than I ever would have thought possible, but I’ve come out of it some – although it’s still a roller coaster of emotions, and probably always will be.  I still can’t believe this happened to us – a member of our family is special needs, has a disability.  Doesn’t seem like something that could ever actually happen to you.  But I haven’t burst into tears in front of a random unlucky coworker for almost a week now ;-).  Joel’s found a trisomy 12p support group on facebook that he finds comfort in.  We do a pretty good job at taking turns freaking out, and being strong for the other one during their turn.  And within our house, me, Joel, Teag, and Dudley, there is so much love.  And Teagan is generally a happy little girl – she is so sweet and loving.  Not many people know – our families, a few coworkers each, Tracie, Molly, Becky, and now you.  We’re not embarrassed of it but we haven’t quite figured out how we want to handle it with outsiders yet (you can tell your hubbies, of course), because there is no reason for people to start treating her differently now.  And if I owe you a phone call I hope you can understand why I’ve been distant.  You’re all very important to me, too important to be learning of this through email, but like I said, it was just too much.
Since you are my good friends, I assume if I was telling you this in person, you’d ask me how you could help.  For the MN gals – lets get your hubbies and Joel out for a fun night here or there.  I know I can turn to any of you when I’m sad, men aren’t like that as much.  And if there is something in your life that is making you sad or mad, and you can change it, do it.  I’ve never had anything important I’ve been this out of control over before – to be quite frank, I don’t like it ;-).  And next time you hear someone say the word retard, give them the stink eye for me 😉 I know people aren’t trying to offend anyone when they use it, but since this has happened, I’ve been amazed (now that I’m paying attention) how often people use it – it stings.  And if you want to call me in the next day or so, or next time you see me you want to ask how therapy is going, I would love it – I’m not scared to talk about it, it’s my life now – I just didn’t want to break this news so many times, you know what I mean?  Oh – and pray for her continued progress.
So, I think that’s it.  Sorry that got so long.  Thank you for being my friends.

5 responses to “What’s going on

  1. becky

    I’m so proud of you for sharing!! It’s not any easier to re-read then it was to hear about everything the first time. I have so much love for you all, especially beautiful Miss T. I am so happy she has made so much progress and continues to exceed her goals. You are a such a strong and amazing mama and friend! I am also looking forward to your future posts, because you make me laugh. 😉 But, I will skip the ones about HP and wizards.

  2. Lauren T

    You are so brave to share. Teagan is so lucky to have you and Joel and your families to support her! I’m sure her days are full of joy and love.

  3. Thanks gals 🙂 Your support means a lot. So funny…one of you loves HP, one of you is scurrrred!

  4. Emily Grimley

    Thank you for sharing this part of your life Kathleen! Teagan was blessed by having you and Joel as parents, as you guys are blessed to have her as your daughter. She is beautiful and amazing. Keep smiling 🙂

  5. Pam Ruder

    Kathleen, I was so touched by your story. I’m so sorry you are livening through this very difficult chapter. I’m glad you’ve found an outlet for release. As you know, I’ve been been through some very different baby difficulties and I’ve found that talking.& sharing helped me the most. I also love that you’re putting your story out there to some day help someone else through a similar struggle. As the tears run down my cheek, I’m giving you a GIANT virtual hug! A real one coming the next time I see you!! Give that sweet, precious baby a kiss on the cheek for me please. –Pam

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