• Life Of Reagan

    Through Her Poignant Blog, One NYC Mom Has Captured The Heart (And Often The Humor) Of Raising A Child With A Rare Disability

    By New York Family

    First thing’s first. Reagan Breinholt writes an amazing blog.
    She’s been penning “Reagan’s Blob” (no, that’s not a typo—she’s just droll like
    that) for almost four years—detailing city life with her husband, Jake, and
    daughter, Piper Jane, who has special needs. —

    Reagan’s little girl, who she likes to call Pip or Pippy (if
    only just to make us smile), has a rare disorder that has kept her hospitalized
    since birth. She turns five this May.

    Without telling the Breinholt family story ourselves, let us
    simply say that if you have a child with special needs, or know a parent who is
    raising a child with a disability of any kind, please get to know Reagan
    Breinholt and her incredibly inspiring, beautifully-written and hilarious blog.
    You can start with these three posts. Now, we’ll let Reagan do the talking (um, writing).

    Q: What is Piper Jane’s condition called
    and how does it affect her?

    A: It’s called CCMS (
    Cerebro Costo Mandibular Syndrome) and it mostly affects Piper Jane physically, specifically
    with her respiratory system. There are many minor anomalies, but the bigger
    ones are that she has an underdeveloped chin, a severely crooked spine and is
    missing half of her rib cage. The combination of these problems prevents her
    from breathing on her own, so she relies on a ventilator. She requires so much
    support that it’s not safe for her to be home with us. Which is basically
    suck-central.

    Q: Lots of people can live at home on
    ventilators, why do you choose to have Pippy in the hospital?

    A: I know, thanks for rubbing it in! It would be completely dangerous to have a
    child so fragile and vent dependent away from regular doctor/nurse care. Plus
    we’re just not even allowed…meaning, it’s not even an option for us.

    Q: Why did you move to NYC?
    A: Because I wanted to real bad. I used to not have any obligations or responsibilities
    and I took full advantage of that by being carefree and adventurous. I lovingly
    pat my younger self on that back for that one (because now “responsibilities”
    seems to be my unwanted middle name). Maybe I didn’t get all “A”s back in trig,
    but I did fun things in my youth. So take that Mr. Hafen (<-trig teacher).

    Q: Why do you blog?
    A: I love to write stories of my experiences. I feel so comfortable writing and
    adding my own spice to make things funny or different (even if it’s just me
    and/or Jake laughing). At first I think it was just Jake and my sisters reading
    my blob, and that was all I ever expected. It has been so fun and flattering to
    gain more blob friends along the way. I’ve received so much love and support
    for Pip through blogging that I really feel pretty attached to it.

    Q: Your husband is hot!
    A: Thanks?

    Q: How did you and Jake meet?
    A: We met in February of 2005 just a month after I moved to NY. I had only made
    one friend in the city and she accidentally introduced us to each other. I say
    accidentally because I don’t think she knew we were going to marry each other’s
    a’s. Which we did about two years later. Holla’.

    Wiped Out Again

    We’re a little sad in the Yellow Unit. I
    spent a lot of my weekend trying not to cry. Piper’s new room is smaller and
    more crowded, and there is no nurse station in there. Since it’s smaller, we
    have to get rid of most of her toys. There is just not enough space. The lack
    of space also means she can’t play on the floor anymore. Thank goodness
    for the big new bed she can play in. Some things were lost in the
    move, which seems crazy since it is in the same hospital. Also, Piper is
    already almost completely out of socks again. Can you believe it? Remember that
    I just bought and labeled like a hundred?

    When we walked in for the first time,
    Piper Jane was taking a nap in her scoli jacket. I tried so hard not to be
    livid. A scoli jacket is a back brace that isn’t really much different from a
    corset. She wears it sometimes, mainly during therapy. There is no reason for
    her to be napping in it unless you want her to nap uncomfortably.

    Saddest of all, and I’m sorry that you who
    love Pip are about to have your hearts broken, Piper Jane is depressed. She
    knows everything is different, but she doesn’t understand why. She doesn’t know
    her new nurses yet, and her room looks totally different. Just a few weeks ago
    I was bragging all over the place about how climby and walky and adventury my
    Pippy-girl was getting. On Sunday, she didn’t smile a single time. She had no
    interest in standing or climbing or playing. She moped around and napped
    for hours and hours, just like we all do when we feel sad too.

    Let me pour my heart out to you for a
    minute.

    It’s just so hard you guys. It is so hard
    to see a little girl, trying her best, fighting the hardest she can fight, just
    to have another wipe out. It seems like every time she seems to get remarkably
    better, and remarkably stronger, she gets wiped out again.

    Why? Fwords and more Fwords. Why?

    You guys, Piper Jane is a good kid! She is
    a good good great special sweet amazing unbelievable kid. So why does her life
    have to be so hard?

    I kept looking at her and petting her
    sweet blonde head. Thinking in my head that it’s time to come home. This has
    gone on way too long.

    More Fwords.

    (When we first went to Blythedale almost four
    years ago, we didn’t like it there at all. Hopefully the yellow unit will grow
    on all of us. Jake, me and my little Pip.)

    Piper Jane Smiles Again

    Look who is her chipper self again!

    Piper_Jane1_REPLACEMENT.jpg

    This visit wiped me out. Piper Jane had
    decided earlier that day, that when I got there she was going to see how many
    times she could dive off her bed. If I so much as slightly lingered a blink, my
    eyes would be opened to a Pip crawling as fast as possible to make her exit.
    She no longer has carpet in her room, so her tumbling off the bed would
    definitely hurt her. I would grab her by the leg, and she would turn around and
    crack up at the panic in my eyes. I am straight up raising an evil plotting
    villain who enjoys seeing fear in the faces of her own family. I looked over at
    my wee one, her tiny body was convulsing from such evil laughing, and I tried my
    hardest to give her that look that my mom used to give me when I was about to
    holler in church. You know what Pip did? She nuzzled Dora into her bosom and
    laughed harder. My “look” needs some work.

    Piper_Jane3.jpg

    I leave you with some mighty cute Pippy
    braids. That’s all!

    To read more about Reagan and Piper Jane, visit
    reagansblob.com.

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