Thursday, March 18, 2010

Pity Party for St Patrick's Day

St. Patrick's Day is almost over, but I'm having a full on party here...a pity party that is!  Reader beware!!!!

I really don't know why I'm feeling so darn emotional.  I'm guessing it's PMS, but who knows since that is all screwy too still.  (TMI I know)  But I really am an emotional wreck tonight.  I have been sick for the past few days so that hasn't allowed me to get much sleep, but that is no excuse for how emotional I am!

I went to our local support group tonight (btw, I love these parents!!!!) and everything was fine and we were introducing ourselves to the speaker and when asked if I have any concerns I just start to lose it.  It's a simple enough question isn't it?  Oh no!  Apparently not for this mom it isn't!  I think what pushed me over the edge was sitting there watching a precious little girl who is just 3 weeks younger than Sweet Pea eating chicken soup and string cheese.  The soup isn't what really gets me (although even that does a bit), but the string cheese does.  Many of you are wondering what is my big issue with string cheese?  Well, I absolutely love cheese!  I should have been born in WI for how much I love cheese (ok, the CA dairy commission is probably mad at me now), but apparently my daughter didn't get the memo.  I've had to refrain from all dairy for the past xx months (don't even want to try to think back as it just makes me cringe) because little missy "might" be allergic to it or it "might" make her reflux worse.  So I can't have it and she certainly can't have it.  Nor can she have any fruits besides pears, bananas and grapes (anyone figured an easy way to feed grapes to an infant), no nuts or seeds, no soy, no shellfish and no apples because those really did seem to make her reflux worse.  Since I'm still breast feeding, mommy can't have any of those items either.  So watching this little girl enjoy her string cheese and chicken soup just really hit me hard.  (See why I think it might be PMS related?)

So back to the question at hand of what am I concerned about...her weight, her stubbornness during therapies, her potential allergies and the lack of concern that anyone seems to have about it and toward helping us determine if any of these things are even real issues, the guilt that I self impose for me wanting to stop breast feeding by the one year mark so that I can actually enjoy the various parties that we are going to, the guilt I feel for not being able to play with Sweet Pea because I have to work full time, and the list can go on forever.  That is why this is a pity party!

We are coming up on the one year mark and I really thought that I would have accepted all of this a lot more by now.  I still wish and pray daily that this wasn't our life and doubly that it wasn't her life.  I try to convince myself that we are lucky and that we have a pretty healthy little girl who is sweet and loving.  A lot of the time it works, but not always.  Going to a children's hospital normally helps because you see so many people who really are worse off than we are...not that I like other people to be in worse shape, but you know what I mean.  But then I sometimes just sit back and throw my hands up and ask why us?  Why can't anything for us be "easy"?  I mean, in the last 12 months here is the list of things that have gone wrong:
  • daughter born with DS
  • daughter spent first week of her life in NICU where for a couple of days we weren't even allowed to touch her without being gloved & gowned
  • daughter had a small heart issue (PDA) that resolved itself (yes it's good news, but it was a concern for a while)
  • had to learn all about DS and what therapies we needed to try to get and learn to be prepared to battle with our regional center because of the budget cuts in this state in order to get her the services that she needs (so far we have been fairly lucky in this arena, but we are battling a little currently)
  • had to patch Sweet Pea's eyes and then get glasses when she was only a few months old
  • have regular visits with the GI who never really tells us anything useful it seems, just keep on the prevacid for the next 3 months and she might be ok then...yeah right!  He has already said that a few times.
  • have regular visits to the ENT and finally got tubes installed just last week
  • have never gone more than 4 weeks without seeing our pediatrician due to some infection or weight gain issue or something
  • try to daily do: oral motor exercises, think strategically about what to have her playing with so that she is developing good habits, watching her so she doesn't try to do splits to get from sitting to laying, etc
  • keep a food journal to try to identify reflux triggers (oh yeah this is something that WE came up with, not the stinking GI!  He'd be happy to have us just keep all food out of her diet for the next 18 years)
  • husband lost his job
  • husband almost took a job in another state for fear of not finding something here (we are still looking for that something here that is longer than 3 months!)
  • I almost lost my job but never actually did
  • car issues that cost a fair amount to resolve
  • medical bills that just keep coming
  • medical procedures (MRIs, echos, EGDs, ear tubes)
  • 5 therapies a week and yet we can't find anyone that will do water therapy out here
  • trying to schedule Sweet Pea's feedings because she can't eat right before a therapy session or she spits up during it
  • we know that we need to do so much for Sweet Pea and we feel so overwhelmed at times
  • I'm sick of Sweet Pea not eating consistently and making her mommy and daddy worry that she isn't growing and gaining weight
  • I'm sick of Sweet Pea being sick
  • I'm sick of Sweet Pea having to take medications (recently it's been 3 different meds at a time!)
  • I'm sick of crying to all of my dear friends who have been so understanding and loving through this past year
  • I'm sick of people telling me how cute she is or her glasses are and never being able to accept it as the compliment that it is meant as
  • I'm the most sick of not being the wifey that I used to be for my husband.  He deserves the woman he married back and I just haven't found my way back yet.  Sweet husband, thank you for being so patient and understanding!
  • and the list goes on
In light of many other parents out there who are having to deal with life threatening diseases and far more serious issues, I feel really stupid for feeling so sad for myself, but I still do!

I read about how so many other moms feel at peace with their situation and I just pray that one day I will feel the same way.  I know I will...I just hope that day comes sooner than later.  I'm not good with dealing with the guilt that I feel for not loving her 200%.  I'm her mother for goodness sakes!  If I can't love her with all my heart and soul then how is the rest of this cruel world going to?

That's it...I'm done.  Pity party of one is closing down the bar in her own way tonight (no, no alcohol was consumed although that would make this more logical too).  Thanks everyone for listening and I look forward to waking up on the right side of the bed tomorrow and giving my sweet little girl a big hug and a smile (can't kiss her since I'm still sick and she is finally healthy) and seeing that everything will get better and I just need to handle things one at a time and stop looking so far into the future.

Love you all!


  1. I think we all throw ourselves pity parties now and again. It's a lot...the extra health concerns (even when they're minor), the early intervention therapies, and the voice that is *always* in the back of your mind questioning, driving, I doing enough?

    I think when Lucy was about Sweet Pea's age may have been the hardest for me. At their very youngest, our kids don't show much delay. As the months wore on, though, it became more noticeable. And the schedule starts to get really, really old! Ha! But then it's like you get a second wind. It's been a while since I've thrown a pity party, but I know that I'll throw myself one again. Probably many times.

    It's ok to feel this way. It does not detract from your love for her. Really, it'll just strengthen it, because you'll know it's a hard fought love and that the two of you have gotten through these difficult times together!

    Feel better! xoxo

  2. I can sympathize with the eating issues - I've gone through the same types of allergy stuff with Chase (including limiting my diet...) but it's finally starting to resolve for us! Hopefully it will for you too. Your sweet pea is so cute and totally worth it. Post tomorrow with a list of all the wonderful things about her and this past year - I bet it's longer than you think! Best of luck with everything!

  3. Gosh you sound just like me last son cody has same glasses (in blue) yeah I know it can really suck sometimes and there is no way around that, you just gotta go thru it. But while last week sucked for me this week is SO MUCH BETTER :) really !! she is a cutie its the first time I have read your blog love it!

  4. I can relate to you completely, in fact I wrote a pity post not too long ago. Lucas will be one soon as well and it's hard to realize that he may not be where I hoped he would be 11 months ago. Your post actually made me cry because you are NOT alone in your feelings, it is so dang hard being a mom sometimes. (Hugs to you.) It will get better and then at times worse and then better and so on, that's just life, isn't it? Sweet Pea is so precious, she's doing fantastic and so are you mom!

  5. Oh dear, we all have our pity parties, don't feel guilty for it. The way I deal with it, I have my moment and move on. For us, just when I think we're going to get a break something else comes up, but every morning I walk in her room and see that bright beautiful smile and it melts my heart a million times over. Find the moments that make you smile and relish in those moments. It's okay to be sad and hope for brighter days, but don't be sad too long. Sweet pea is a gorgeous, happy baby and I'm SOO glad I found you and your amazing baby girl.

  6. Being as I'm reading this after you commented on my recent post, you know I totally understand and relate. In some ways it does get easier but in some ways it doesn't. Even though we shouldn't compare, what parent doesn't. We are friends of a family whose daughter is 4 months younger than Peanut and she looks her age, has better age appropriate behavior at times and SPEECH! It can make me sad, but then I think of the things Peanut has and I power through. I think it's important to not only allow yourself to have a pity party but to let others know it's ok, sometimes this journey is hard and sometimes it gets to be too much. We have to let it out so we can move forward. Now I have to go read your next post!

  7. I hope how tomorrow went (i'm reading these backwards so i hope this makes sense...) makes the next pity party even easier to get through and get over. Those lists, and precious pictures and videos of the awesome moments, really really help. Glad you got through it!