Thursday, September 23, 2010

Happy 15 month birthday Charlie.

(Charlie, 15 months)



















Today is Charlie's 15 month birthday and we're spending it in the hospital. I usually try to stay on the positive side when writing Charlie's birthday posts, but that's not going to happen tonight.

Last night was a rough night. It was difficult to get Charlie down to sleep and even after we finally did, she woke up crying several times. Matt and I chopped it up to her molars coming in, and just made sure to dose her with Advil before we finally hit the hay at 1:30am ourselves. Charlie was really snoring up a storm and her breathing sounded really 'crunchy', which isn't totally unusual for her, her secretions pool in her throat and she always sounds a little 'crunchy' and 'gurgly' like she's Listerine-ing at the oddest times...usually when she's delighted with something. She tends to gurgle when she's showing off or excited about something, but can't find the words to express herself, so instead she gurgles and makes super animated Groucho Marx expressions with her little red eyebrows...so, what we usually think of as cute and very 'Charlie' was actually difficulty breathing and managing her secretions this time. It's so hard being a first time parent with a sick child and trying to figure out what's normal and what's not, what's just Charlie, and what's cause for alarm?

Anyway, I was up all night and swapped with Matt at 8am this morning and went and slept in Charlie's room/the guest room. We were meeting with a Social Worker at 11am and I wanted at least a couple of hours sleep before we began discussing feelings and Charlie's condition. I NEEDED sleep to handle and process those things. When I (barely) woke up, Matt and I fed Charlie and noticed that her nose was really runny and her breathing sounded more labored than usual, we still tried to convince ourselves it was due to her teething, but after awhile neither of us were buying that weak explanation, and we just knew it was a cold, a cold that we had managed to outrun for 11 months since her diagnosis. It was a sad day at our house today, it felt like the first domino had fallen. Even though we knew it was inevitable that Charlie would get a cold, we had let ourselves down. We failed. When you out run something that long, I think you start to believe your invincible, but, the truth is, it probably wasn't so much of what we were doing all along, but it probably had more to do with luck as to why Char hadn't had a cold yet. Yes, we kept our hands clean, bathed her often, kept her away from sick people (to the best of our ability) and cleaned out her nose on a regular basis, but it wasn't going to work forever...even a great goalie can't block every goal from getting in...colds and germs are relentless, and they'll sneak past you when you least expect it. That's not to say we won't remain diligent in protecting Charlie from germs in the future though...actually, we'll probably become even MORE protective of her.

My friend Christie asked me a few weeks back, "So, what actually happens to Charlie when she gets a cold?" And I explained it like this: The first one or two colds probably aren't actually going to be her end, but, it works more like strikes...each cold Charlie gets works as a strike against her. She can't clear or move her secretions very well, so they just build up, making her more weak, more prone to infection, and less likely to handle the next cold. I sort of think of it as her lungs starting out as an empty glass that slowly fills with fluid, one cold at a time, until it overfills and isn't able to do its job anymore. So, i guess, we're on strike one.

Rewind to earlier today...Matt and I were talking to the Social Worker when both of us became more honest about our feelings about everything that's been going on, than we've been in a long time. It's been a long time since we've been in the presence of a neutral party who's sole purpose was to delve into our emotions and figure out what we we need as individuals and as a couple in the middle of a very sad situation. Matt and I seem to forget that. We are almost used to feeling alone and disconnected, and we're getting used to having a child that we're told will never really move, and won't live long. It's REALLY sad, yet we seem to think we're just supposed to buck up, put on a happy face and get over it and move forward. I often feel like I'm in a bad made for TV movie about me, and starring me...it just doesn't feel real half the time, and when it does, I feel like I'm being too dramatic about it all, and I think, "Jesus Cherie, it's been 9 months since her diagnosis, when are you going to stop talking about it and move on with your life...wah, wah, wah!" Really. I confuse myself as to why we can't just be happy she's here still, and keep on keeping on. And Matt feels the same. I realized today when we were talking to the Social Worker that we have a lot of similar thoughts, but we don't share them with each other, and it alienates the other and contributes to our own individual inner guilt, allowing it to fester and grow out of control, building shame and anger. For example, I LOVE Charlie, Matt LOVES Charlie, but today it came out that we have both, individually and secretly, thought, "Please end this soon so I can take off and start a new life and try to forget this one ever happened." Not something you really want to share with your partner, not something you really want to keep to yourself either. And no matter how guilty and ashamed it's made me feel to think, it felt good to know Matt has felt the same way too...let's us both know it's natural to feel that way sometimes. But, now that she's actually sick, we're feeling ashamed and guilty again, wondering if the universe heard our thoughts. If so, we didn't mean it!

After the Social worker left, I cried some more, got myself together, told Matt to call our pediatrician, knowing full well we'd soon be headed to Children's Hospital, and went and took a bath and a nap before packing our bags. I know how it works now, here at the hospital, Charlie fusses all day and night because it's an unfamiliar, yet familiar place, because people are poking and prodding her, she sleeps with me at home, so I end up 'sleeping' in a tiny crib with her, spending my night adjusting the machines she's hooked up to, to stop/avoid the random beeping in the middle of the night that without a doubt will ALWAYS happen..ALL. NIGHT. LONG. When we got here they took a chest x-ray, took a sample of Charlie's mucus and blood, and put us in our own room in ICU. Then they went over the DNR (do not resusitate) orders with us, and asked us what we wanted to do if a situation should ever arise where they needed to perform CPR or put certain machines on/in her. I honestly don't even really remember what I said, I seem to blank out in those situations. But, holy...the hospital makes me cry EVERYTIME! Its a reminder of how serious Char's situation really is, and of how many other little sick kids there are too.

As for her cold, so far she's doing OK. She's so tough. She's actually still up, at 1:02am, singing and watching Elmo. We/they have just been monitoring her blood pressure, heart rate, breathing, and suctioning her secretions, seeing what, if anything happens next. Hopefully this is the most extreme the cold will get, and she'll get over it quickly without any complications. Please send good, positive, happy thoughts Char's way.

* Just found out that we're here for at least a few more days. They are worried Charlie could form a 'mucus plug' which she could choke on. She'll be on her bipap (breathing machine) full time, and they are performing chest physio a few times a day on her, trying to loosen things up. Again, the doctors went over what our wishes are regarding life saving techniques...and it's got me emotional. We went over the positives and negatives of all the possible interventions, and it really hurts to think about...the doctors have warned us that a seemingly happy and healthy looking SMA baby can go from good to bad really fast, and without warning. Hopefully we're a long way away from any major decisions having to be made/carried through.

Happy 15 month birthday Charlie! You're a very strong and brave little girl, and we love you so much!!



22 comments:

  1. I've been reading your blog since you appeared in the Vancouver Sun and I wanted to say, you write so beautifully. I can't say that I understand what you're going through, but your words are just all very true. Charlie-Anne is a very lucky girl to have you as her mother. Sending her lots of get-well vibes.

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  2. I have read your blog for a long time now and am always amazed at how beautifully you express what you, Matt and Charlie-Anne are going through. I hope that this cold is just a little blip in the road and that you'll be home soon. Take care of yourselves and know that a lot of people are sending good thoughts your way!

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  3. such an honest blog and i know many people will find their way here if their child is diagnosed with SMA or another terminal illness/diagnosis. give little charlie a hug from all of us who follow your lives and think of you daily.

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  4. hugs to you guys and charlie. she is crazy beautiful even when sick

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  5. What a emotional roller coaster for you guy's. I hope that the worst is over and from hear on out she stays happy and healthy. I send warm wishes and a healthy vide. Be strong Charlie.

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  6. Awww, Cherie, I'm so sorry Charlie isn't feeling well. I'm sending you all get-well wishes and a short stay in the hospital. Charlie sounds so precious when you were writing about her singing with Elmo! That's too cute. Take good care of each other.....I know you will........Kris

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  7. I have am a reader of your blog and i just want you to know i think of Charlie and your family often. I'm a first time mother of a 7 1/2 month old little girl and i can only imagine what you are going through. I often talk to my daughter about Charlie and how adorable she is, i want you to know that we send you all our love and support through this difficult time. Your in our thoughts daily.
    Sarah, Ian & Jessica

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  8. Sorry to hear Charlie isnt well she is a brave little amazing girl and I am sending positive thoughts her way that she will home soon. YOU and Matt seem like amazing parents and Charlie must know how loved she is. Thinking of your family and wishing you all the best.

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  9. Hope Charlie is doing better. I was googleing SMA type 1 trying to understand what it was and came across an article by Dr wang. It was called Denying death-stanford medicine, on a little girl named Alleena Hope Miller also with SMA type 1 who is also on facebook. Im sure you probably read this article but just in case i thought i would let you know. I know myself having a child with Autism im on the computer looking at new studies and watching every show they do about it. So i hope i dont offend you i just feel like moms need to stick together and help each other out. So try and get some rest and nurse that little sweetheart better.

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  10. It is really heartbreaking what you guys are going through. I am amazed at all of your courage, especially charlie! Know that there is lots of support coming your way. Your family is often in my thoughts. I have been following your blog since the beginning, and think about Charlie often. I hope she is doing better soon and you guys can all go home.

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  11. Sending so much love your way to all three of you. You are always in my heart and prayers <3 keep being the brave little fighter that we know and love CharChar xoxo-libbs

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  12. Sending strength to you guys and Charlie as you get through these next few days. I hope it's just a little cold like the one I and my son have, not much mucous involved. You are all so brave and I admire your honesty so much. Try not to blame yourselves or each other for any part of this shitty situation, though I know there's no way around all the complex and jumbly emotions. I'll be sending prayers your way.

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  13. I've been following your blog via facebook, posted by a mutual friend. I hope this cold ends quickly and Charlie is better soon. Thinking of your family and sending healthy thoughts.

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  14. Happy month-a-birthday Charlie, you hang in there sweet angel.
    Cherie, good for you and Matt with the emotional work you're doing. Sounds like you just took a huge step forward in your relationship ~ one that many others never get to. As you know, there's a process unfolding for all of you and between each of you...keep trusting that process as painful as it is. Thank you again for sharing your journey so publicly. This is learning for us, a teaching opportunity for Charlie (she's got her degree already!), part of the healing for you, and a gift to those who pay attention. You are loved and with many prayers & positive energy coming your way.

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  15. I was so heart broken to hear of little Charlie's cold. I realize the implications that come with this sort of thing and my thoughts and prayers are with her.
    I also want to applaud you on your amazing honesty about what this is like for you and your husband as a couple to walk through this extremely challenging season of your life and your marriage. Your lives will never be the same because of this and I as an on looker can only hope and pray that you find all the treasures that have been placed along your path, so that when this season comes to an end you will KNOW it was not all for not.
    Much love and light to you, your husband and your precious angel..you are all an inspiration and for the record I am so okay with you not having it together, being pissed about this all and wah wah wahing!!!!
    Guilt is not our friend, don't let it in....peace

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  16. We are thinking about you guys. Being in the hospital sucks so much. This is why we hardly ever go when Nora gets sick. We have the equipment at home and the knowledge as well. It's actually less stress to battle these things from the comfort of your house. I think Nora recovers faster as well.
    Stay strong. Please let us know if there is anything you guys need. Advice or even a good cry/laugh over the phone from a parent that truly understands your situation.
    T.J. (Nora's Daddy)
    http://www.Goodentree.com

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  17. Caroline &amp; EliseSeptember 26, 2010 at 10:05 AM

    OMG I just read your blog today and realized shat she has a cold!! my heart skipped a beat and I'm sorry i haven't responded any sooner, I just didn't realize you guys were in the hospital!! I really really hope that she will pull trough okay and that you will too!! thinking about you!! positive vibes are being send over non-stop!!! love & hugs

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  18. Sending lots of ((((((HUGS)))))) & prayers for a speedy recovery for Charlie.

    Happy Birthday Charlie!

    Linda xoxoxoxoxox

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  19. Thinking of all you and hoping for the best. Peace... and love.

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  20. cherie, you and your family are always in my thoughts and prayers. may charlie have a speedy recovery.

    xo j

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  21. I am thinking about you all! Love to you! xo

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