Wednesday, July 25, 2012

Struggling

 

I don’t usually write about personal issues…

but there is one thing that I have been struggling with lately.

I find it so hard to talk about with anyone, because I don’t want sympathy (or an argument), I just want understanding. I guess what I am looking for is empathy…someone who understands what I am feeling.

First, if you are unfamiliar with me and my blog, our son has a genetic disorder and is also autistic. This is also not something I have felt completely comfortable writing a lot about. I don’t want to sound like a victim. It is a part of life…a part that 1 in 88 families is dealing with. I am NOT special.

After Gabe was born, I was unable to return to my fulltime job. Actually, I was advised not to put him in a daycare setting at all until they could figure out what was wrong with him. That was fine by me…after spending weeks in the hospital holding my gravely ill little boy, I wanted to be home with him. We eventually found out that he has 22q11.2 Deletion Syndrome…but not until he was almost two! Long story short…he was born without an immune system…or at least not enough of an immune system to keep a tiny baby healthy. He also had some feeding issues, but again, long story.

On with my issue…

I had not worked a fulltime job in ten years, until last summer. I did not work at all until Gabe was two. I went back to college for 3 1/2 years, and my mom and mother-in-law watched Gabe. I also had a few very part-time jobs…because I had to. My husband is a carpenter…so we aren’t rich…HA! Then, Lily came along when Gabe was six. At that time I was working as a part-time receptionist/secretary for my dad’s construction company (my husband is also employed by my dad).

I am going to back track a bit now…

I NEVER intended to be a stay-at-home mom. I did not want anything to do with that. Then, I had Gabe, and I had to stay home. Again, that was fine by me, at that point I had changed my mind…I wanted to stay home. I do want to reiterate…I HAD TO STAY HOME. This is where some people start become all judgy. They do not understand that it was not an option for me to work. We wanted our son to be alive and healthy. For 3 years we had one vehicle, we did not go out to eat, we did not see movies, we did not buy any new furniture…we had NOTHING extra. And…we did it all without government assistance (do NOT email/comment to me about this…I understand that in some cases it is a necessary thing). I am throwing that out there so it is clear that our choice in no way affected any tax paying citizens financially…so you can see why it is unacceptable for ANYONE to have a negative opinion that they need to share with me about OUR choice. It is NONE of their business. I know…I am getting really defensive…but I have felt and heard the mean (and sometimes backhanded) comments for eleven years.

Am I talking in circles??? Sorry!

 

 

Kids 5

 

These are my sweet kiddos. I LOVE them more than anything in this world. I would do anything for them…including give my own life. If you are a parent you know what I mean.

 

 

Kids 3

 

 

Kids 7

 

 

Last year, I was unable to continue to work for my dad’s company. Nothing dramatic. Just a rearranging of the business, and I wasn’t needed. So, that left me without a job.

This is where people start to get all judgy again. I can’t just go find any old job. I needed to find a job that allows me to leave on a moment’s notice because Gabe is sick or is having a problem, and for numerous appointments with teachers, therapists, doctors, etc. It is also hard to find daycare in my area for kid’s with disabilities, and also doesn’t cost more than I would be making.  But…most of all…I did NOT want my kids in daycare. And, if I am being honest with you, and myself…I LOVE being able to pick my kids up from school and talk with their teachers. I need that firsthand account of what is going on. Especially with Gabe, as he is so inconsistent. I have to know how he ate, any behavioral issues, and his academic progress (which is very inconsistent).

Well…after six months of unemployment (which I did NOT collect unemployment for…in case you are wondering)…we blew through our small savings. We had been looking for our first house, and that obviously had to come to a halt.

Then, by chance, a job opportunity fell into my lap. It was a seasonal, summer job…but fulltime for three months out of the year. I interviewed, not really thinking I would get the job…or knowing if I would even take it if offered to me. Well…I got the job. And the more I thought about it…it could be the perfect solution to some of my problems. During the summer Gabe was not in school, so there were no meetings with teachers and therapists. He wasn’t being exposed to an onslaught of germs, so the likelihood of him getting sick (which he was A LOT) was smallI would also get a day or two off during the week, and since my mom was available to watch them two days, I only needed daycare one or two days a week. So…I found a daycare willing to take on Gabe, and accepted the job.

 

 

Kids 2

 

 

 

 

Kids

 

The summer flew by. I worked a lot of overtime. I found my self weepy at times…tired, and missing my kids and husband TERRIBLY. But, I liked my job, and LOVE the people I work for. Plus, I get a break from autism (not Gabe, mind you), which I feel guilty writing.

And it is only for three months out of the year…

 

Kids 12

 

 

Kids 4

 

When the kids went back to school (Lily started preschool), I was offered another very part-time job working for a company that is closely tied to my place of summer employment. And I could make my own schedule! Perfect. Kind of…

Now I am going to tell you what I do…which I actually wasn’t going to do when I started writing this post.

My summer job is as the assistant manager of a yacht club…my fall/winter job…cleaning boats (or more appropriately…yachts) and offices.

If you have ever cleaned a boat/yacht before (which I am sure all of you have, right?  Haha!),you know it is grueling, dirty, wet (and in the fall…COLD) work. I would literally get in my car and cry some afternoons. My fingers would be so frozen they did not move…which caused me to drop numerous cleaning instruments in the lake..oops…I would have big, fat spiders crawling all over me, and, since I am NOT coordinated at all, I fell down a bit…okay..a lot. So, I was bruised, achy and cranky when I got home. I did NOT complain (to anyone I worked for or with…to my mom…maybe;))though. I was given a job, and I am grateful. I will admit…it is the WORST job I have ever had. EVER. I was so glad when all the boats had been put into storage for the winter! At that point I was lucky enough to be asked to clean the marina offices a few days a week. Which kept a little extra money coming in…and involved little pain.

 

Kids 11

 

 

Kids 9

 

So…that leads me to now (kind of). I have found new daycare for my kiddos (another story), and am working fulltime again.

But…this year is difficult. I still LOVE the people I work for. But…I REALLY miss my kids. Lily cries when I drop her off at grandma’s in the mornings (even though I KNOW she is fine after I leave, and my mom does all sorts of projects and fun things with her…who do you think taught her to crack an egg so beautifully). Gabe doesn’t want to go to daycare at all…the kids do not understand his disability like his classmates do. He has been told he has a disease, and that he is “the devil”. NOT awesome. These kids are properly reprimanded…but still...it hurts my heart.

 

Kids 6

 

We have been lucky enough to have Gabe selected to receive a scholarship for occupational and speech therapy twice a week for the ENTIRE summer! That is an hour and a half EACH per week!!!! But he has missed a couple appointments due to scheduling conflicts where I can’t leave work to pick him up from daycare and take him to his appointment. My parents help a lot with this, but sometimes it can’t be helped. So, I feel horrible that he missed an appointment. He LOVES his therapy! He actually begs to go! So…I feel like a real jerk when I can’t make it possible.

I am sure some of you are rolling your eyes at me…but that is how I feel.

 

Therapy

(Gabe waiting for therapy)

I want to be with my kids more than anything I this world. I do not want to worry about them. I do all the time. So much so, that I can’t sleep at night anymore. I find myself anxious and edgy. Sad.

And nobody gets it.

“Everybody has to work. That’s life.”

“That’s your issue. You are going to have to deal with it.”

“They’re fine.”

These kinds of comments do NOT help!

Another wonderful (sarcasm) issue I am having…my diet and exercise. I eat horribly…sometimes not at all…other times junk, because it is there, and offered to me. I have not had time to walk AT ALL this summer. It was my release, and unless I steal time away from my kids, I can’t do it. And NO, I can’t walk at night…I would be so keyed up I would NEVER fall asleep! Actually, the diet and exercise (or lack of) is likely making my emotional state worse. I am also gaining weight…not much…only 4 or 5 pounds…but STILL! Stress hormones are killer!

 

So…

Here’s where I am going with this…

I need to make some decisions. Hard decisions.

What am I going to do after this summer is through???

Both of my kids will be in school all day (which is making my throat tight and achy as I type), and I am now feeling the pressure. Do I have to go back to work fulltime? I am sure it is expected of me. But…we’re back to the being available to my kids thing. Remember, I have a child with special needs…which means increased needs. I do not want him riding the school bus! We have had issues with that in the past year. So, I have to drop and pick them up…but if I have a fulltime job…I can’t. I also can’t speak with his special education teacher each day to find out his new challenges and triumphs. The same goes for Lily, who I have kid of left out of this I feel, but she is JUST as IMPORTANT!

Again, I know a lot of you are thinking I am being dramatic…most parents have to work, and I am making it sound like you are bad parents. I am not trying to do that.

But…

These are MY kids. And this is My life. We do sacrifice a lot of things that some families feel they can’t live without.

That brings me to the other dilemma I am finding myself in…if I don’t bring in a substantial amount more…we will NEVER own our own house. We won’t be able to take our kids on dream vacations. And, I will always have a nagging feeling of inadequacy.

Sorry this is such a long post! Even in this mass amount of words, I still feel like I haven’t been able to convey the depth of this struggle. I think I could write a book.

 

Kids 8

 

Am I alone? Does anyone else feel the same?

I will be writing more on this subject, but I need a break (and I am sure you do too…HA!).

 

Thanks for listening.

 

Jessie

10 comments:

  1. Hi Jessie, I have been following your blog for a few months now and reading this post hurts my heart. I don't have a child with special needs, actually, I don't have any kids so I don't know exactly how you feel. My husband and I found out we may never be able to have children of our own, and it's made me truly realize what a blessing children are. I think you're a very strong woman and you're putting too much pressure on yourself. Your kids are lucky to have you as a mother. You obviously care so much about them and would do anything for them. The only advice I can offer is to listen to your heart. Don't think about houses, etc. right now. Take a few hours for yourself where you can be alone and think. Good luck to you!

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    1. Thank you so much for your kind words...and for following my blog. It means a lot:) I truly appreciate it!!

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  2. I've been a quiet follower for a while now & I just wanted to say it's ok. I don't have any children but I think I understand what a little of what you're struggling with. It's really hard to raise a family on one income. It's really hard to raise a family at all. But I think you must give yourself a bit of a break before you break :-) I know it's easier said than done but I will pray that the Lord will give you & your husband the wisdom to make these hard decisions. But please don't sacrifice your health & rest. It might seem like a solution in the short term but keep your eye on the long term.
    I myself am at risk of losing my job (downsizing) & along with that could go a lot of our dreams - a house, a trip to Ireland, starting a family...only God knows how it will all work out for both of us!

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    1. Thank you so very much for your prayers:) I will pray for you also...hoping that your job will remain:) Thank you also for following my blog...it means a lot to me:)

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  3. I just had to comment because I am you..or I was 30yrs ago. My son was born with Primary Hypogammaglobulinaemia which means none of Igg's Iga's or Igm's were intack and working... born at 2 lbs had his first infection at 10 hours old! His frist surgery when he was 29 hrs old. We spent the next years finding out what was wrong and in hospitals more often then out. I KNOW the feeling of cannot work...of making do and doing without...I know how it feels to miss a therapy appt...how it feels to have him sick and how it feels to the other kids who cannot have sleepovers..or partys..or so many other things becuase it may make him sick. I KNOW how it is to find a sitter let alone a daycare where he will be safe... I KNOW how other parents don't understand that their childs running nose means my child will be the hospital and I KNOW how they always seem to think they know whats best for your family...I really do KNOW....but more I also KNOW these years...as hard as some of days are, really are amazing. You were choosen by God to be Gabe's mommy and Gabe is perfect just like he is ...he's just as God made him and God does make mistakes! I still know the frist time my son went into a toy store...Christmas season when he was 5...yes 5 years and he had never been in a store....his first store was a ToysRUs ...it was all he wanted for his birthday! He went to public school the year he went into 4th grade and I spent everyday bieng sick wondering what some other child would expose him to. It was many years before he was able to handle being around people but in time ...and lots of doctors...he got better and better. Today he is 30..went to Purdue and works full time...never in all life would I have belived that when he was young. Work or not...you choose what is right for your family and tell anyone who says anything that you are doing whats is right for YOUR fmaily not thiers! My heart and prayers go out for you and your family. You are great mom!! Never forget that :)

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    1. Thank you! You story is remarkable! I am so happy that your son has found success...and you some peace:)

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  4. First and foremost, this is YOUR life and YOUR kids... you do what you feel is right for you and them. My kids are grown, but I was able to be home with them for many years. And I am SO grateful. We struggled, financially and yes I was jealous of others, who had families, and "appeared" to be able to buy fun stuff, send the kids to camps, sign them up for stuff (again the $ issue), go on dream vacations, etc. But again, I'm SO glad I was able to be home with them. Don't be so hard on yourself... and remember people are more important than things. As long as you have a roof over your head (whether it's a house or an apt), food to eat and time to be with your family.....

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    1. Thank you:) I am glad I am not alone. Being with our kids is way more important than stuff...I agree:)

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  5. Jessie,

    I love reading your blog and wanted to tell you that you are an excellent mom and wife to have such a tender heart for your family. Perhaps you and your husband can pray and have some quiet talks about the direction you want to take. This is a short season when our kids are so little and it sounds like you are making beautiful memories for them. (They are super cute, too!)

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  6. Thank you for the kind words. I agree that prayer is definitely a powerful thing, and know that it will lead me to my answer:)

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