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
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!