Parenting

The day I learned my third child was going to be born with a broken heart did not change me. No, nothing different happened except for the fear of him not making it through delivery. I had hope. Hope that he would be born healthy; hope that he would not need surgery like the cardiologist promised and hope that my life would remain the same. That hope is dead now. I still have hope, but it is a different kind and on a whole new level. This hope was born about two hours after Micah, when I heard he would require open-heart surgery after all. Then, at that moment, my hopes for my baby at that moment turned to the hope that he would make it to his room “one day” that he would make it out of surgery, that he would live. Parents are not suppose to actually think in their minds for a moment that their child might not make it.

My life changed, I no longer held the hope of a “normal” universe, it turned to the hope that I could just hold on. After all, there were two more, equally as important and incredible people who needed me at home. Micah was struggling to live, to breathe, to be. Noah and Leah were born perfect, perfect in every way. Sure I worried about them, I am a worrier after all, but my worries all changed that day. Looking back, I messed up, but at the same time, I did not. My two oldest babies needed me, but I could not leave my fragile baby alone in the hospital hanging on for his life. In that moment, I abandoned them, they were without their mom for about three and a half weeks physically, but I checked out emotionally for much longer than that. I was a screaming fool who could not control my range of emotions, so I simply stayed angry and sad all the time. I feel guilty for possibly causing Micah’s heart defect, but I also feel guilty for not being there for Noah and Leah, they needed me too, that is the mom’s job. I also feel horrible at how I have spoken to them, yelled at them and expected them to understand what I was feeling, that is not their job, they are just kids, kids who need a “healthy” mom and not one who is going to freak out if they spill their cup of milk on the floor.

Anyway, I am struggling with something, how can I treat Micah the same way as I treat Noah and Leah when I fear all the time for Micah’s life? All these heart kids can be just fine one minutes and gone the next-poof-gone dead, forever out of their parents arms, so how do I do it? I want him to have a normal life and not to be defined by his heart, but how do I let it go for just a little bit? How do I just let him be and not worry about him overexerting himself or overdoing it? I just need someone to tell me the easy answer, because I am not finding my answers anywhere, I cannot find a way to stop feeling this way. I hate that I worry about my baby leaving me. I am scared of everything with all the kids, but it is magnified by about 2 trillion with Micah. What will I do when he is old enough to make bigger decisions about his life and I do not have the ability to keep him as safe? Oh my, I do not even want to think about that!

Another thing, why do I get angry with my healthy kids when they complain about a little scrape on their knees…their brother had his chest pried open when he was only three days old-TWICE, and he wakes up every single morning with a smile and laugh. He never complains long about any injury he gets…little or big, he is thankful. I feel awful that I do not worry about a little cough or fever with them like I do with Micah after all they are healthy. I don’t think parents of “healthy” kids get it, not one bit. I don’t even think that many try even when they have a dear friend who has a child with a chronic illness. Let’s be totally honest here, I use to worry about my kids getting really sick, we all do that, but you know what? I had no idea that kids are born sick and the fear that is born into the hearts of these chronic kids. I don’t think some people realize that every night when I go to sleep I pray for Micah to live through the night so that I can have his smiling perfect personality in my life for one more day. I do not think that parents who have not watched their child fight for their life realize the fear that is instilled on a parent when parents have to sign a waiver that says that their child MAY not come out surgery or that some kind of tragic side effect could happen in surgery that may cause permanent damage to your child. A parent who has only had to deal with the common cold or low-grade fever does not understand or realize what a parent of a chronic child experiences. It is awful and it makes me sick to my stomach to even think about what Micah has gone through.

I had a friend ask me a few weeks ago if I was okay. My reply to her was sad but incredibly true in that I do not think I will ever be okay again. I can be happy yes, but I will never be okay…how can a parent who lives with the possibility of their child’s heart stopping at any moment be okay? How can I not think about every activity I share with Micah being the last activity we will share together? I understand that we are not promised any tomorrows, any of us, but the fact that Micah has that much more stacked against him makes it that much more difficult for me. If I let my guard down something comes back and slaps me in the face, so it is better for me to be hyper vigilant with every detail of Micah’s life, it helps me…I am prepared and I have some control. I am able to make sure that he gets the care he needs, when he needs it, not when it is too late. This crazy behavior makes me sane in some way, it helps me realize that I can control what I am able to control and I have to leave the rest up to my belief that G-d will take care of my family. I have to believe that, but I will say that is hard too. So many bad things happen to good people and it is hard to deal with, really hard.

To make matters even worse, the relationship between the parents of this sick kid changes. All of our hopes and dreams for our kids change and we are faced with dealing with all the medical bull shit that we have to learn about and understand. There is resentment and anger and tons of frustration with one another. There are misunderstandings and fights that should never take place and there is the bitterness that is expressed throughout every day. I know that I am blamed for Micah’s heart on some levels…he has never come out and said it, but I can tell. I can see it in his eyes and through his words. I am angry with him for not learning more about the medical stuff and for telling me “things will be just fine”. No one knows that, no one. A child’s illness changes a marriage, it is inevitable. Parents should not have to deal with this, but we do, every damn day, every day. We never get a vacation from the illness, we can vacation, but the disease follows us, it has been born into our hearts and our souls and we will never have a day that goes by ever again where we do not have some sense of worry about Micah’s heart. This can and does destroy marriages, but I know that ours is strong enough, we will fight and re-find each other and we can be happy again, it will just take time and a lot of work. We are struggling hard now, but we will make it.

Okay, I guess I feel a little better now, not much, but at least I got some of this out of my system.

Long time!

Well, I have been pretty much a basket case for awhile, but I am hoping to turn it all around. I am not going to write too much about that, but I thought it would be fun to write 25 things about me...I got the idea from another blog that I read.

1. I adore my precious babies (they will ALWAYS be my babies, no matter what they say)
2. I love dogs...almost all of them...not mean ones, but I think that they are the cutest most loyal creatures in the universe.
3. I could NEVER be a vegetarian...I love beef way too much
4. I know way more about the heart and pediatric medicine than I ever care to know
5. I take on WAY too much...all the time and still take on more!
6. I cannot keep a clean/straight house and will always rely on my cleaning girl for all of eternity
7. I love watching fireworks
8. It was just brought to my attention today that I cannot remember the day I received my engagement ring...I do remember the day he proposed, but the actual ring receival was not that important to me...crazy huh?
9. I am painfully shy
10. which makes it horrendously difficult for me to make friends...which is why I do not have very many friends
11. I truly want to help the people that I work with in counseling them
12. I am not as religious as I would like to be
13. I am a pure blooded Democrat it is in my core belief system
14. I cannot even begin to imagine what a woman must go through inside herself to make a choice to abort a baby...babies are such a gift and such miracles
15. I love Disney World. I especially love taking the kids there and seeing them get so happy and giddy about the entire experience.
16. I fear daily of losing one of my kids
17. I love to cook, but never seem to find the time
18. Jonathan does not like any foods that I like to cook, so I guess that is why I can't find the time ;)
19. I went from NEVER wanting to be a SAHM to PLEADING with Jonathan to let me stay home to WANTING to go back to pure UNCERTAINTY about it all around.
20. I LOVE the beach...but hate going in the ocean.
21. I feel a lot of pain but will not ask for help
22. I am terrified of airplanes...terrified.
23. I love watching the kids get so excited about something so small, but to see that in their eyes it is HUGE!
24. I believe in Happily Ever After (but I think that there are so many obstacles along the way)...I DO NOT believe in divorce...there are only a few reasons I think it is okay
25. I love my family so much! I would be totally lost without each and everyone of them in my life.

So there it is...a few things about me.

Just moving along

I have found myself full of emptiness lately. It is such a strange feeling since I do feel so much love for the kids, but it is this overriding feeling of nothing inside of me. It has gotten to the point where I no longer even get that angry about the things that once upset me (I do still get angry, just not as much). Anyway, it is time that I get put on medicine for this. I have finally made the appointment with the psychiatrist for next Wednesday and I will cave into this enemy of mine, the antidepressant. They are such amazing medicines that help turn lives around, however, I still feel in my core that these medicines are what turned Micah's life struggles into a reality. I continue to hold that guilt, yet I fully understand and comprehend how incredibly IRRATIONAL it is...but I do...I feel that I did this to him and I think that perhaps I have been refusing to get on medicine for so long almost as a way to punish myself even further. I know that the medicines will make me feel better...they have always been able to in the past, but do I truly deserve to feel better? Look at my sweet boy who cannot run around for more than 5 minutes without panting and gasping for breath...it hardly seems fair that I will be able to take a pill with a little water and then poof, all is great in my world...he can't do that...ever...he will always have to struggle. I know that I should not be feeling this, thinking this or even writing it, but I cannot help it. I feel alone, empty and sad...not much else. It is cutting me into small little pieces. I cannot keep up with the house, the kids, our "normal" family activities, and it bothers me.

I know that things can be so much worse in our lives, but I just feel plain rotten...I am so grateful for all the great things that we have in our life, but I still feel such a loss...another big one for me is how badly I want another baby. I know that I cannot handle it right now, too much going on, but I want another one so badly. I cannot part with any of the baby things because I do not want to. I am still young, but what if we had another baby who was sick? I do not think I could handle it...but what if he/she was not? Is it fair to have another baby and then stop having as much time for Micah? Is it fair to the three I have to have another one and have that baby have a heart defect as well? I just don't know...I don't know what to do with these thoughts. My mom who was so against me having anymore kids even mentioned that I am still young and may want to have another one down the road...but if Jonathan does not, then I really can't...I just don't know.

I guess that is where I am, in the land of not knowing...that seems to be where my life has been for over 2 years now. I know that no one can look into the future and tell me anything of how it will be, but some kind of idea of what might happen would be great. I once went to see a psychic...it was when I was dating Jonathan, and I cannot help but think about how so much of what she has said is true. I don't know, maybe I should see another one (I say this half laughing, but half meaning it). I am too afraid of what she could possibly tell me though about Micah. I know, crazy, crazy, crazy, crazy, but again, true.

I am going to stop typing now, since I sound like a total whack job...crazy loon I am :)

80 year old grandmas

SHOULD NOT, I repeat SHOULD NOT be left outside in Dallas, Texas in July while they wait for their granddaughter to come and get them...even if said granddaughter should be there shortly...grandma's may be difficult and stubborn, but you must tell them the way things are...and that does not include making them wait outside.

Kids

Okay...just want to clarify that I believe that kids should be allowed to be kids while they are young...for example, five and six year olds who are playing a sport should be playing that sport with the intent to learn how to play and not the intent to WIN! They are still young and need to learn how to play in a safe environment without adults making a mockery of that learning curve. Lay off screaming at the kids, coaches and referees until they are at least 7 years old...seriously!!!!!!!!!!1

You may now return to your previously scheduled programming...my vent is over...but don't you fear, there is another one coming in a moment :)

Just Plain Irritated

That pretty much describes my mood over the last couple of weeks. Here it goes...sorry for ranting yet again!

Here is one that totally gets me. There is a yahoo message board for people who live in our neighborhood. You would think that this would be a beneficial place to gather information about important things in the neighborhood, but in reality, all it does is irritate me. I ended up finally unsubscribing to it about two weeks ago because I had heard just enough from this one individual (who happens to "own" the group). Whenever anyone made any comment she would quickly reply with the most negative comments like the rest of the universe had no brain or intelligence. I think the best was the comment she made about home owners associations being the same as the Nazi's! I about lost it at that time and immediately responded to her letting her know how offensive that statement was and completely inappropriate to compare such things. She apologized in such a random way..."oh, I understand about genocide, I am Russian". Well, then, if you understand don't be a total social reject and make the comparison! She is so annoying.

Anyway, the last straw was not that huge of a deal, but there was a comment made about a babies swim diaper leaking in the community pool and the pool had to be closed down to be cleaned. Well, the last I checked, I don't think there are many parents purposely having their kids poop in the pool and she just went on and on about it. RIDICULOUS! Then another woman replied with a comment about that at she went off on her! CRAZY! So I replied with an email to her again stating that I will not longer subscribe to her stupid yahoo group since she is missing the basic social ability to be kind to people. She replied back saying that she would pray for me as I am obviously not well! SERIOUSLY?!?! Here is a woman who claims (publicly on her precious group) that about 15 people have ATTACKED her...so I replied with a simple email stating that when we feel a certain way about about something (say for example, being attacked by all these people) it may be time to look inside ourself to see what it is about ourself that is really the root of the problem. Well, that just pissed her off more...oh well. I am a big believer that when you feel that so many people are out to get you, you are either a paranoid personality or you need to change...in her case, she needs to change...she is just downright mean and obnoxious...even Jonathan said so...so it is not just me :)

Then on to my anniversary. I am beyond pissed off that my in-laws forgot our anniversary AGAIN this year. I know that it should not bother me, but it does. It makes me really upset and I find it rude and uncaring. I am pissed that they have such a lack of respect for my family that they cannot acknowledge (on the actual date or before I post something about it online) the day that joined our families together. It truly hurts to the bottom of my core...it does not bother Jonathan, because he knows that these things are not what his parents ever remember, but it bothers me and I cannot just get past it. I am really trying, but this is the second year in a row and a call with a message left on the answering machine the next day is just not acceptable. My parents both call me separately on all big days throughout the year (birthdays, anniversaries and holidays). I am not sure if my mom reminds my dad, but the fact is they both take time out of their really busy schedules to recognize the important days.

I am finding it harder and harder to deal with the in-laws and I have to for my family, but I am NOT going to go out of my way for them at all anymore...not at all!

Jonathan and I are not getting along well at all. We do not agree on much of anything and I just don't know what to do. I think that we probably need to go and talk to someone again, but we can't seem to find any time...what else is new? I know that he blames me (though he won't state it out loud) about Micah and I can't say that I don't blame him. I know that there are things that he does that bother me and though I have spoken to him about it, he has not listened...for example, he will ask my opinion on something, I give my opinion, then he does what he wants anyway. That is fine if he has his mind set on what to do, but if you are going to do what you want to do, just do it and don't involve me...that is all.

There is another board that I read that has a parenting and family section. There is a thread about every other week or so about not vaccinating your kids and how if you vaccinate your kids you are putting them at risk!?!? Again...I find that absurd! I know that there are kids who have adverse reactions to them, and I am not speaking of those kids...I am also not talking about kids who space their shots,or CANNOT get their shots due to their health, but these parents who are not vaccinating their kids at all! It really infuriates me because I think of the poor babies that CANNOT get vaccines due to their HEALTH and all these crazy parents who are putting the innocent kids at risk. It really upsets me! There are kids (and adults for that matter) that have compromised immune systems that are not able to get their vaccines, and then you have the parents of kids who choose not to vaccinate, therefore giving their kid a high possibility of getting those diseases and then passing them on to the people who would like to be protected but are not able. THERE IS A REASON that the AAP makes guidelines...sure there are risks, but for goodness sake, there is a risk of being hit by a car this afternoon. Look at Micah...what the heck did he do to deserve this? NOTHING! There is nothing that I won't do to protect my kids, and I just don't get it...I have read all these "anti-vaccination" threads and I still CANNOT find a SINGLE reason to NOT get every damn shot when the doctor tells me to do so. I hope that I have not offended anyone, I am not saying that I think any less of you if you do not vaccinate your kids, but I so not understand why placing a risk of a deadly disease is better than risking the very small possibility of an adverse reaction.

I also don't get why when the pediatrician that one has been seeing tells one that they will no longer be your doctor if you choose to not vaccinate, upsets a person! That doctor has every right to not treat you if you are going to put kids in their office at risk (again those that are not healthy enough or too young for the vaccinations). I had never thought about the fact that I could have exposed my kids to a deadly disease in the pediatrician's waiting room because they were not old enough for a shot yet and someone else had that disease. I also really cannot find anything in what the anti-vaccination community has to say that makes any sense to me on that.

I think I am just in a really bad mood...most likely PMS :) That is another thing that stinks...I forgot how much I hated PMS...no wonder I was always pregnant and nursing...I get horribly sick for the 5 days I have my visitor and the week before is pure hell!

Special: Yes, Special Needs: Not Really

I cannot even believe something that was said to me this past weekend. I was discussing going back to work full time next year (simply a possibility, not reality yet) and someone (I will not use names) actually asked me if I could even think of doing that with Micah being "special". "Isn't there a special school for kids like him here in the city?" SERIOUSLY?!?! When did having a feeding tube and a CHD instantly make someone qualify for the special education stuff? Micah is very smart and thankfully we are not dealing with major developmental delays...so why in the hell would someone even suggest that bull shit...sorry for the language, but I am really angry.

Anyway...just because my baby is "special" and by that I mean not a boring, average kid with no issues...does not mean that I have to put my career and future life on hold to wait around and do nothing. I am struggling with the possibility of going back to work, but in all honesty, I am really hoping that I do get this job. I think that as crazy as this seems, it will help stabilize my life and not allow me to sit around all day and focus on the what ifs with Micah. Micah needs to be around other kids...he enjoys it, so it is almost unfair of me to want to keep him locked up in his little bubble that he is in. He will thrive even more. And as for the numerous doctors appointments that he will still need to go on...that is what is nice with working in a school...school lets out at 3 and I can take him to late afternoon appts. What is the world is the big deal?

So there! Yes, Micah is special but his special needs are not that significant that he cannot do EVERYTHING (outside of heavy duty sports) that Noah and Leah do every single day of their "Normal" lives.