The Reality of Life

The reality of life. Four little words that can carry such a heavy load for so many people today. I have made it a point over the years to only write about art related things on my blog. I am a private person. Only my closest friends and family know my personal business. And to be honest holding back has made me feel like a fraud some of the time. Because even though I am a private person if you know me and I think of you as a close friend I do not hold anything back. I am one of those people who is straight to the point and tell it like it is.

My art or as I used to call it my crafting was what has kept me out of the insane asylum. It didn't start out that way. I was just crafty and whatever craft I was interested in I did. I taught myself just by reading books and magazines because back when I started there was no internet. I would go to the library and check books out and learn that way.

Four or five years ago when I found mixed media things started to go bad for my family. I can't even blame the current economy for the way our lives have changed because our problems started long before the rest of the country took a downfall. We may have dug ourselves out of the hole we fell into if things had gone on as before but when the recession hit the rest of the country we were too far behind to recover. My husband works very hard. He kills himself six or sometimes even seven days a week but it isn't enough. He is an electrician and anyone who is in any of the construction trades knows just how bad it is. It doesn't matter where you live the jobs just aren't there anymore and if you are self employed like my husband it is even harder.

This blog post isn't an oh woe is me post.  I haven't even gotten to the main problem that is troubling me today and has me writing all of this yet.

One question first...like any other artist I like to keep up with all the blogs and websites. I love looking at other artists work. I get inspiration from the artist that I admire. I like to know what the latest and greatest new products are even if I can't afford to buy them I can dream that one day I will be able to. Not that I would buy all of those products even if the money was there. But hey who knows maybe one day I will win the lottery lol. Guess I should buy a ticket once in awhile to up my odds huh?

So my question is this how in the world can people afford to buy all this stuff when the money is so tight every where in the country. Now I am not talking about the artists out there that actually make a living from their art. Your running a business and of course you have business costs and art and craft supplies are the things you need to keep generating an income. So when I am reading a blog and I see some other stay at home mom who is buying all the latest and greatest I want to know what her husband does for a living because maybe my husband needs to find a new line of work.

Now onto what brought me here today. I have two granddaughters and another on the way. As most grandparents these days I have found myself having to help my children with their children. 

To be honest I am selfish and fought it as long as I could. At this point in my life back when I was dreaming about grandchildren I had this little fantasy about having my own art studio. My own kids either moved out or old enough that they didn't have to be tended to every minute of the day.  That Grammy and Grampy would be settled in life and the grandkids would come over on the weekends, maybe spend the night once in awhile. Visions of crafting and baking cookies with them and then packing them back up and sending them home with their parents. Well wasn't I in for a big surprise!

Now for the reality. My nineteen year old son has a seven month old daughter. Surprise!! We never saw that one coming! He and his girlfriend and the baby live with Grammy and Grampy. Grammy now watches the seven month old while her son is at work ( thank God he finally found a job with the help of his girlfriends father because there are no jobs for the inexperienced when there are fifty people filling out an application for one position at McD's these days) and his girlfriend goes to school during the mornings and works part time at two different jobs a couple of nights a week and the weekends. 

Here is a picture of the little sweetness as she naps at the very moment I am typing this.


My oldest daughter has a 3 1/2 year old daughter and is seven months pregnant. During her pregnancy with Hailey there was always something scary going on. Low amniotic fluid and issue with an artery in her uterus or placenta to name a few. We were wrought with anxiety most of the nine months she was pregnant. When delivery time came around she ended up having a c-section and although Haileys head was little out of shape from the struggle of trying to push her way out of an uncooperating pelvic bone all was well. She was perfect. Nothing was wrong and we cursed the doctor and specilist for causing us undue anxiety.

 Here is Hailey at the park this past weekend.

Now fast forward to my daughters second pregnancy. All is not well with little baby Addison as she has been named. First we get a high level blood test. I don't know what the blood test is called but it is the one that checks for down syndrome and spina bifida. Any woman who has ever been pregnant knows what I am talking about. This test can be grossly inaccurate. Matter of fact during my pregnancy with my youngest, who is 12 now I had a high level and had to go to the specialist and geneticist. A possibility of down syndrome was what I was told. I refused the amino and delivered a healthy baby, no down syndrome.

So when my daughter gets the same results I am a little anxious but not panicking yet. Here we go again I think. My daughter is only 24 years old. Down Syndrome happens to older women....... the test is wrong! We will go get the special ultra sound. The 3D one where they check for down syndrome markers and we will be done with it. My daughter who tends to panic alot, like her mother goes to the first visit with her husband. During the first pregnancy when the problems started I went with her but now I have to watch her daughter Hailey and Emma the baby so I can't go.

She gets the ultra sound. They can't tell if the baby has Down Syndrome. Of course they can't tell from the ultra sound! The only way to tell before birth is with an amnio. She refuses the amnio because of the risk of losing the baby.
Even though they can't tell us anything about the baby having Down Syndrome they find a problem with the baby's heart. They don't even really tell my daughter that there is a problem but that they need her to come back so they can look at the heart again. Hello! Red flag time.

Down Syndrome. Who cares about Down Syndrome now! Down Syndrome we can deal with even though at this point I know nothing about Down Syndrome. Just that it is a chromosome defect and that the baby will have learning issues.

Now I take the heart news in stride. Ok so they want to look at the babies heart again. Sometimes this happens they want to look at it again to check on something. Something they might have seen. Ok so maybe they seen something. Sometimes they see things and they aren't really there. Sometimes they see things and it fixes itself. Sometimes you are expecting something bad and when the baby is born by some miracle the problem is gone. These are the things that are racing through my mind and I am telling my daughter to keep her from having a breakdown.

It seems like a month before the next visit. Why do doctors do this to people? Tell you or hint that something might be wrong and then make you wait FOREVER to get it checked out.

Second ultrasound I go. Not only for moral support but to ask questions that my daughter is bound to forget because of the stress. I didn't have to ask any questions. The doctor was straight to the point. The baby has a couple of problems with her heart. Not just one problem! A couple. The one problem they can see is that one of the chambers are open and should be closed. Instead of the four chambers that a normal heart has Addison has only two.

Now my daughter has to go to one of the two nearest Children's Hospitals in our area. She chooses St Petersburg/Tampa Children's hospital. We have a friend who's daughter was born premature and had heart problems. They used that hospital and was very happy with the care. 

It 's almost 3 hours away. Another month before she can get an appointment! We do know before this appointment that now my daughter will have to deliver the baby in St Pete. We are not sure at this point how this is going to work. She will have to have a scheduled c-section. When we find this out she says Mom you have to go with me. You don't have to go to the appointments but I have to have you there for the birth. That is a big thing......... me not going to the appointments with her. I know how much she needs and relies on me in times just like this. But how are we going to do this? How is this going to work? Who will take my 12 year old to and from school? Who will watch the 3 1/2 old while me, her mother and father are in St Pete? Who is going to watch baby Emma while her mother is in school? Well I will tell you this......two months later and we still don't know how we are going to work this!

At the doctors appointment in St Pete they tell my daughter there are three problems with the babies heart. I don't know the correct medical term but in layman's terms the baby has something wrong with the chambers of her heart. She has a problem with the aorta and the pulmonary valve. This is all very scary and stressful but the bottom line is that they can fix everything! 

How and when the surgeries will be done will depend on the baby when she is born. She will have to stay in the hospital for observation for at least a week. They will watch to see how she is breathing. If she has any issue with her breathing they will do the surgery immediately on the pulmonary valve. If that happens the baby will be in the hospital for at least a month if no complications come up. The surgeries will not be done at the same time so there will be more then one surgery. The baby has also developed a leaky valve, spotted at the last visit. The doctor said that is connected to the other issues and they will just fix it.

Back to Down Syndrome. They also told her that ninety percent of the time a baby with these specific heart defects will have Down Syndrome. We can deal with the Down Syndrome! I know the odds are against little Addie but I am still holding out for a miracle. Just because the odds are so high there is still a ten percent chance that she will not have Down Syndrome. Maybe this is my way of dealing with it all and maybe I am in denial as my daughter likes to tell me but as long as there is a chance that she does not have it I am expecting the worst and hoping for the best.

In this sense we are lucky. We found this out during the pregnancy.We have time to prepare ourselves the best we can in this situation. There are plenty of families out there who did not have the chance to prepare and had to deal with this news at the delivery of their child.

So I wanted all of my readers to know why I have not been posting much lately. Between taking care of the grandchildren and all of this I am not getting much art time. I plan to take an art kit with me to the hospital because I know I will need to do something with myself to relieve the stress of this situation while I am up there at the hospital with my daughter. Even if I never have a minute to work an anything just the fact of having some paper glue and paints with me will help because I will know that if I get a minute or NEED something to take my mind off things I will have some supplies to work with.

If you have stuck with me and read my entire post I thank you!
Why did I do this after keeping my blog free of anything personal? To be honest I don't know. Maybe I will connect with some other families out there dealing with this same type of situation. Or maybe just writing it all out will make it more real. Or hopefully it will relieve some of the stress I feel from not being able to use my art as a stress reliever as much as I would like to right now.
Thanks for stopping by. If you feel the need to respond but would like to do it in private you can find my email address in my profile.

I am going to hurry up and hit publish before I change my mind!

Arlene

Comments

winnsangels said…
May angels be with you and yours Arlene.
Barbara Hagerty said…
God Bless You Arlene!!

I don't think it's a mistake to remain positive. A positive attitude is not the same thing as denial.

My daughter was supposed to be a downs syndrome baby. Like you, I refused the amnio. She was born perfectly fine. In her case, the test was inaccurate.

My son was supposed to be a dwarf. He is now 16 years old and 6ft tall. But his test was based on an accurate measurement of the femur before birth, a possible pituitary problem, plus a family history on my husband's side. He did not grow at all between 3 and 9 months of age, which made uw, and all the specialists certain. In preschool, he had some dwarf-like characteristics (I don't know the terms, so I hope I'm not offending anyone by my ignorance), and we didn't question that he'd be a dwarf. Then when he was 5, he got and unrelated case of RSV, and was very seriously ill. At one point in a high fever, when both my husband and I were with him, he said to us, "All that matters is that we love each other." We both broke down and cried because it sounded so much like last words! But he recovered. As he recovered, he was very thin, and very hungry. Since then, he is still thin, has never lost his huge appetite, and from that moment, he started growing upward! He has remained hungry and healthy as he has gotten taller and taller. He is now the same height as my husband. The doctors and nurses have just shrugged their shoulders, and watched him grow, taller and taller!

This is just one case. Everyone's experience is unique, and I'm not trying to give you false hope, or encourage you to indulge in a fantasy. Just have realistic hope. Because really, you never know what will happen in life, even in the midst of facing the worst, or the best. And even when things don't turn out the way you hope today, there's still tomorrow's hope.

We're going through some very rough times ourselves. It seems easier sometimes to just give up. But that's never, ever the best thing. Just keep dealing with what life brings, and keep hoping. Things change sometimes when you least expect them, but I'm sure you already know this and don't need me to say anymore.

Take care!! You're not alone!!
Gardanne said…
Arlene I am so sorry for all that is going on in your life right now. Your daughter and entire family is so lucky to have such a supportive Mom.
Tami said…
~hugs~
and here all i do is talk about myself.
Heather said…
I stumbled upon your site while looking for advice on dyeing fabric. Your post is very touching and my heart goes out to you and your family. I hope everything will work out for you family in some way. For those things that don't go as you'd like them, I hope you find the support you need to deal with these difficult situations.
Tina Grimes said…
Just stumbled across your blog while looking for art inspiration. Found this post and had to read it all...we have very much in common. I haven't gone through the medical issues with the baby, but my heart went out to you as I read about it.

I do have a 24 year old daughter and 2 grandbabies. I helped raise my 6 yr old grandson--working all day, then watching him while my daughter worked, and still running my online business and helping the Hubs with his business. I have a husband who is a self-employed plumber and contractor...and we struggle in these tough economic times (I no longer work outside the home--and it has greatly affected us, and it's been impossible to find a job).

I, too wonder how some artsy and crafty folks can afford to buy all the latest goodies and gadgets, when I have to find things to sell to afford mine most of the time! But I do what I can, because working on my art and crafts makes me feel whole. And it sounds corny, but it feeds my soul.

At any rate, your blog post touched me so I had to comment. I love your art. And I'm sending you hugs across cyberspace--from one artsy mom and grandma to another. Take care.
tgiff76 said…
I was just cruising the blogs on my network blogs from facebook and this post just touched my heart! I feel the enormous amount of love you have for your family. Your strength is absolute. I pray for blessing for your family and darling grandchild.

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