Monthly Archives: October 2011

The House, A Yellow Rose Bush & My Grandma

A little over two years ago my husband, daughters & I were living in a very small run down apartment in Silicon Valley. It was a very unhealthy place we named it the sick house. It was where we had so many bad things happen. I was diagnosed with a terminal cancer. My husband had his surgeries & my youngest was diagnosed with epilepsy, PDD-NOS, SPD & ADHD. For many years I thought we would never escape it. We had many chances but none panned out. I had all but given up until I got an email from someone whom we had discussed renting from the year before.

He had recently purchased a house & out of the blue he contacted us. He said he had bought it and thought we would be perfect for the house. I was interested and asked him to send me a picture. With in minutes I had a picture. The first thing I noticed was the yellow rose bush.

I know that seems a bit strange being it was the house I was interested in. However as soon as I saw the rose I was hooked. See I grew up very attached to my grandma & gampa. Off and on through out my child hood I spent much time with them. My grandma and I were very close and she loved yellow roses. She watched my older daughter before she was not able to any longer. Before ALS took her life from us.

Back before my husband and I were married, I lived with them. My husband did not like where I was living at the time so he moved me in with them the weekend after we met. I guess a 4x8ft dirt floor shed wasn’t the ideal place for me to live. Yes I lived in a shed, while my biological mom lived in a converted garage that I paid for.

So I was looking at this picture I was sent of this house and I heard a whisper in my ear “This is where you are suppose to be”. I honestly believe my grandma whispered this to me. My proof was the yellow rose. We really had not looked this far inland and I was not crazy about how hot it gets here, but this is where we were supposed to be. I told my husband this & he was a little hesitant but he trusted me. We made the decision after seeing it once. Was a long trip just to see the house 6 hours round trip from where we were living at the time. My husband fell in love with this house too.

Was just a matter of weeks and before we moved. I organized 2 garage sales to get the money we needed to move. My husband sold our second Rodeo. We moved on one of the hottest days that year. I had called ahead & arranged for some people from our new church to help us unload the truck. All in all it worked out pretty well..

Now when we moved PA was non-verbal & hardly walking. She was 2 and just 24lbs. After we moved she really started to thrive. We were able to get her into early intervention & some serious therapy. She started to gain weight and make some real strides. I honestly think the apartment was holding her back. After a few months of therapy she was running.

I still miss where we lived before. Well the area anyway. I loved the bay area & everything about it. After all we spent the first 16 years of our marriage there. I know we had to move and I am grateful for the opportunity we had to move to a nice house. This really has been a good move for our family even with all the hardships we have endured over the years we still have a darn good roof over our head **laughing**

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Will I see her grow up?

Lets face it our kids will out live us. This usually is not an issue, as it is a normal part of life.

For some of us this is a real concern because of our children have special needs. I think for good reason we think of this more. Most of our kids will need some sort of help & some even life long help, depending on the severity of their autism. I have seen so many blog posts taking on this subject. Yet most deal with after our kids grow up & we are old. For me it is a little different. I may not see my youngest grow up.

I have mentioned before I have cancer. Not just any cancer but Neuroendocrine an incurable type of cancer. It is manageable to a point & right now controlled somewhat by medication & a form of chemo I will have to do for the rest of my life. I may live a long time with the cancer managed, but lets be real, right now from onset of the carcinoid syndrome a person has between 15-25 years. There are those who have lived longer & some not. It is a real gamble. It depends so much on how fast the disease progresses. I am 6 years in & my disease has been fairly stable until the past 2 years.

PA is 4 years old & I have between 9-19 years. Which means she could lose me when she is 13-23 years old. This is scary for me. She will still have her dad & older sister. However this kind of haunts me & I think of it often. I try not to dwell on it, but I need to start planning now. My biggest fear is I have no idea how much help she will need & who will be around & willing to help my family.

I know I am not the only one who may not see their child grow up. I am not the only ill parent in the world. I also know in a few years I will need more help caring for her & my own needs. I know I will be around for a while but I have no idea in what capacity I will be able to care for her.

I am just now starting to really look at all of this and it is a little overwhelming. I wish I could say I am putting money away into an account for this, but I am not. Nor will I be in a position anytime soon to do so, because both my husband & I are disabled. We use all of it right now to care for our two daughters. Now. We don’t have any extra to put away fro a rainy day let alone to have anything saved for when I am gone.

This is where my OCD thoughts take over and run amuck. My biggest fear is I will not have anything for my girls nor will I be able to have anything set aside to help my youngest with whatever she may need as far as help in the future. I still have no idea how independent she will be. She is on the higher functioning side of the spectrum & I know she will be a functioning member of society, but she will always have things to battle and she will need some sort of continuing care.

Sometimes life seems so lopsided that I even have to think of this now & not 10 years or more down the road. There are so many things I still need to look into like wills & other things. I think they should offer classes or something. These are just things that go through my mind & things I am dealing with at this moment in time. I did not mean for this to be a platform for me to be like “Oh look at how bad I have it.” or for anyone to feel sorry for me. This is just my reality & what I face every day.

Play Date for PA = Sleepless Night for Mom

Well the play date did not cause the sleepless night. Actually the thought of the play date is causing the sleepless night for me. See I LOVE the fact PA is having a play date & also that she has been talking about this for days. I think it is wonderful.

See PA does not always play well with others & frankly I do not know this lovely lady very well. I mean I know her she goes to my church & she is a wonderful mom to four beautiful children. Most people adore her & she is a very pleasant person. I actually like her & would love to get to know her better.

Then what the hell is my problem right? Well yes, see it’s complicated. Truthfully not so complicated. I talk all the time about how PA has a hard time with playing with kids. She doesn’t play with them. More like around them. She loves to be around kids, but has a hard time relating to them.

Until tonight I never thought of my own insecurities with other people.

As a kid my father was in the Army & we moved around a lot. I never learned to make friends. It never really interested me. The fact we moved a lot made it so much easier because it didn’t matter if I didn’t make any friends at one post, because well we were only going to move. It didn’t matter. I also had 3 sisters at the time so if I had to have a friend well I just awkwardly attached myself to one of theirs. I faked it much of the time just so I would look like I fit in.

Come on we all have things we struggle with. I have a really hard time relating to most people in person. On line I can be just like everyone else or I think I do a pretty good job anyway. As a kid I never fit in. I was always the one picked last for games. I was always just a little slower than most and was the kid who got beat up on the way to school every day. Yes, this really happened.

It was the longest time we had been at any one post was in Germany On the way to school every morning this kid from down the street would beat me up. Keep in mind I had 2 sisters I walked to school with every morning. One of who is 11 months younger than I. How did I get separated? Simple, I always lagged behind saw something shiny & inevitably would lose track of time. I was often late to school because of this.

One day this kid got a god shot in & knocked me out. People got worried, as I was later than normal. Someone found me in a little park that was on the way to school. MP’s were called & I ended up at home trying to explain what happened.

I am still unsure how this really went down, but without knowing months earlier accidently hit this kid over the head with my metal roller-skates. Well I may have known I did this, but honestly forgot to apologize. I was not the most tactful child. I really don’t remember much of the detail but I was made to apologize for hitting him over the head. I don’t remember if he apologized, but he must have.

As I grew up I was able to learn how to make friends, had relationships even got married and stayed married (I have a very patient husband who puts up with a lot). However even with the years behind me of having successful relationships (many more unsuccessful than not) I still lose sleep at the thought of getting to know someone new.

So tomorrow this lovely lady is coming over with her 4 wonderful children & here I sit tonight freaking out over the possibility of saying something completely inappropriate or doing something so awkward that this poor woman might never want to be in the same room with me again. I know this sounds completely unrealistic, but a genuine fear for me right at this moment. I know full well it will be fine & the worst thing that will happen is I will dominate the conversation and she might think twice about spending any length of time with me for a while.

Just goes to show in some areas we may not be so different from our children.