It’s my party and I’ll cry if I want to…

I threw myself a bit of a pity party last week. It was kind of a lonely affair since the only guest was me. I suppose Addison was there too but she doesn’t really say much. Though on second thought, she should actually be the guest of honour since she is the reason I needed to wallow.

Except for a few fleeting moments on the night Addison was rushed to the ICU in heart failure, I have not allowed myself to indulge in the “Woe is me…why me?” train of thought. When you see all the other ICU families at the bedsides of their little ones, who are also battling a litany of life-threatening medical problems, you get off that train pretty damn quick. And then after that, you are going full-tilt just hanging on to the roller coaster that accompanies a life-threatening medical problem.

While life has mostly returned to normal, it isn’t normal and never will be normal. Addison’s new heart is not a cure. It is a manageable condition. Of course, compared to the alternative, there is no choice.

Last week was frustrating. On Tuesday, we found out her Tacrolimus levels (a moving target we can’t seem to reach) had dropped down to 4.4, which is even low for her. Our little barely 8kg baby is on a huge dose…even bigger than what an adult transplant patient would get. So it was increased again, putting us at 4ml/2 times a day. Back to the lab for blood tests Friday which showed her Tac had not budged much at all. Now there is talk of giving her 3 doses a day…8am, 4pm and midnight. Wow, that sounds pretty awesome doesn’t it? This is an anti-rejection drug she will be on FOR THE REST OF HER LIFE! The reality is no one has an answer to the medication issues. We don’t even know what her Tac levels are throughout the day because these tests are done just before she takes another dose. The body of research on neonatal heart transplant patients is pretty thin. This morning, another date with the lab techs. Now we are awaiting the latest numbers with bated breath.

On top of that, the little princess has been fussy this week. Her napping is off. She is clingy. She is probably teething. Separation anxiety, mental development milestone, growth spurt, whatever. It all put me over the edge and I was feeling sorry for myself wondering “Why can’t I just have a healthy child????” Sigh. Then I felt guilty because I know I should be so grateful for every extra moment I get to spend with my baby watching her grow up. Don’t get me wrong. I am truly thankful for the miracle that gave her a second chance at life. Once in a while, I need to stew about it.

Ok, I’m all good now.

Love,

Elaine

9 thoughts on “It’s my party and I’ll cry if I want to…

  1. Awe Elaine i know your hurt, frustration, and if there was a way i could make that better for you… 😦 Addison is one lucky girl to have the most loving dedicated parents there is and no matter what this journey throws at you , You will over come it.. She is a fighter! and i know they will get this under control for her real soon ❤ ❤ ❤

  2. I cannot even begin to imagine what you are going through, but my deepest thoughts are with you. Addison is a darling little girl and a strong fighter to boot ! A tear here and there never hurt anyone. Stay strong ♥ ♥

  3. As a mom to a young adult son who has “exceptional” needs, I can so relate to your post Elaine….while I love my son unconditionally and am grateful he is a part of or family, I find myself occasionally worrying about what the future holds. I think most parents do this, but in our case circumstances outside of our control complicate the so called ” normal ” developmental milestones our kids will follow. As much as I am typically a glass half full kind of gal that faces life’s challenges head on, I find it particularly hard when it affects my child. I admit to the occasional pity party, but this has also helped me immensely over the years. Sort of an emotional release for the appointment/ medical therapy life style we are forced to deal with. We live life in a gold fish bowl viewed by health care professionals, therapists, community agencies involved because of exceptional circumstance. At times it is not only necessary but expected that we are ” Super-human” to cope with all that is demanded of us. We have to become experts in our own right empowered with medical knowledge we never expected to accumulate in this lifetime. So, know that we have viewed the big picture, I feel you are simply doing what us mere mortals do occasionally, decompressing from the overwhelming and stressful components of your life. Forgive yourself my dear, let the tears flow as they seem to cleanse the soul and allow us to put one foot in front of the other. Your life journey has turned out differently from what you anticipated, but it will be a magnificent journey nevertheless. Warm hugs to you, Aaron and Addison. Cheryl. Victoria, B.C.

  4. Welcome to Holland
    By Emily Pearl Kingsley

    When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?” you say, “What do you mean Holland? I signed up for Italy I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in flight plan. They’ve landed in Holland, and there you must stay.

    The most important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

    The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

    ———————–

    Hi Elaine, this is a poem I sometimes read when I feel down. I know how you feel, and you know what, it is just healthy to feel like that from time to time. Being a mom gives you many challenges, being a mom to a child with health problems and special needs is even tougher. Most of the time I stay positive and I am in the “go, go, go” mood, but then a simple thing like watching another kid do something my kid can’t makes me really sad. And even worse, when it is Mattias himself who gets sad because he can’t do it. But then we just remind ourselves that it is okay to be sad, but after a little time, we can choose to look at the positive things and all the things we can do, and we both feel better again. To allow yourself to feel sad gives you perspective and the feeling of being happy is even better too :o)

    Love, Hege

  5. Hi Elaine,
    Thanks for ‘opening your heart’! Many times I’m sure we all feel a lot like you but with not as much on our plate to complain about. One thing I’m learning is to hold tight onto all the moments of being blessed with any angels in my life. At times things are overwhelming but in retrospect well worth the journey.
    I recently came across a quote from Greg Mortenson’s book ‘Stones into Schools’ that has put a lot into perspective for me as my life has always seemed to be one of ‘taking care’ of others:
    I don’t know what your destiny will be, but one think I know: the only ones among you who will be really happy are those who will have sought & found how to serve.
    You have been gifted with an incredible blessing to take care of. Hold on tight to your beautiful gift & always accept a shoulder to cry on when you need to. You are often in my thoughts & prayers.

  6. you need to have yourself a good pity party once in a while – it’s not easy I know that all too well.. but Addison sure got the right parents.. you two are able to handle all this so well.. it’s the new normal for you – all these trips to BCCH and docs and no, it will never stop – even when you’re old and gray (like us! lolol).. but then you never stop worrying about your children, whether they’re ‘healthy’ or not so much. indulge yourself in that pity party every so often – and don’t forget to have a good ‘girls night out’ or pamper party too 🙂
    Happy New Year to you, Aaron and Addy

  7. Thx for sharing and venting…..hang in there, e!!!!! Little Addie will fight through this…she was a born fighter!!!! (and now she’s a little fiesty monkey!!!) you guys are amazing and an inspiration for all!!!!

  8. Hi Heart Warrior Mother,
    You echo the feelings of all of us who manage our transplant child’s life. Sometimes it just truly sucks, for lack of an eloquent word! Elaine, you are in early days, and those emotions never leave you, unfortunately. As you already know, there are so many gifts that come along the way. Pick up the phone and call when you need to talk to another “warrior mother” – we get it!!

    Thanks for the beautiful pictures – they lift me up always!

    God Bless!

    Carmen

  9. Pretty sure you are allowed a few pity parties a year! 🙂
    Hit the spa with your girlfriends, date night with Hubby, just a cover up I know, but eh, painted toenails just feel good! Some days SUCK! and that is O.K.!!!!!

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