blacksquirrelgallery’s blog

My blog is primarily about a family living with the struggles of chronic illness. Please believe me when I say that I love having nothing to say about hospitals, bleeds and gimpy husbands. It just seems that I am at an impasse on blogging here. But I love blogging on vox, it's comfy, and friendly so I don't want to just let it sit for now.
So what do I write about when we are all doing so well? Do I change the theme a bit and make it another boring family blog? Do I add my volunteer work (which is pretty odd and fun) or do I add our artwork and photography? Maybe I'll go frugal, as my life is very frugal indeed. Ooo, gardening!

For a while I' think I'll do a little of all of the above and have some unstructured playtime. I hope you don't get confused but life is too beautiful to talk about being sickies all of the time. We are well rounded people here.
Or maybe it's just that I am finally seeing that and am ready to move on to another subject or two.

When a family goes through personal strife some people seem to jump ship and some people step up to the plate.
I am truly thankful for the one that was here daily. But in all honesty, that person starting taking over and the small attempts to change my belief system were just too much to deal with after a while. At first needed someone to take over the task of holding me up. Isn't that pathetic? It's true though, but why didn't I think of asking my husband? She let me know anger was a natural progression in dealing with a broken baby and told me that taking care of me was the only way I could take care of Fairy Princess and Little Man. She was right and I will never take that away. But when her own disappointments turned towards me and mine, I realized that mama hurts come and go and yes, she is having a hard year. One of her Bars are both having a very hard year, and anger at the world is her outlet of choice. But leave Fairy Princess out of your line of fire.

When a family is going through personal strife, it is really way to easy let someone take over, little by little you are no longer in control. Maybe give yourself a chance and see how strong you are; maybe give a ship jumper a call and see what where the hell they've been and why they disappeared. You may be very surprised with the answer. Mostly, it's fear and not knowing what to do or say to you.

Maybe, when you are feeling strong enough, you can teach a little. Teach people that not knowing what to do and say is just fine. Sometimes we don't anything more than an old friend to hang out with for a few hours. Every mama, even those with perfectly healthy children need to escape now and then. And even mama's with perfectly healthy children have hurts and fears and need to talk. It's possible that they don't think their worries are worthy of a mama with "real fears and hardships". So think about giving an old friend and call and be weary of the new ones that swoop in from down the block...

I usually don't put many photo's of my kids, but we've had such am amazing 2 weeks of fun, nice weather and friends visiting. I have to share. We played in the hole to China, had crafty fun on rainy days, Fairy Princess had camera fun and we played with friends. It was all good!

I grew up singing Jesus Loves Me, I knew that my two hands made a steeple atop a chapel full of parishioners. I knew we were going to heaven; a beautiful green place that smelt of wildflowers and jelly beans. I knew my beagle, Floyd, would run with other dogs and lions and even a few lambs.

God was this ancient guru figure with long grey hair and a beard that always blew in the wind, he wore a toga. And i did what he said to do. Or didn't do what he said not to.

Angels were benign beings that only love. My guardian angel wrapped his wings around my body at night to protect me from bad dreams. And the boogie man that lived in the hollow tree across the street.

We go to church sometimes. Honestly, it's so difficult to shop for a new church once you've been so let down by the people that are supposed to teach you higher thinking.
But how is it that my kids are afraid of angels, like ghosts?
When I sat Fairy Princess down to really explain God, Jesus and Angels all she got out of it is that God is HUGE, and his angels are basically fairies flying around doing good deeds.  At least she isn't afraid of her room any longer. But I think it's time we buckle down and find a place where people are much better teachers.
After all, I want my kids to know the pleasure of dreaming of heaven, seeing "God Clouds" and knowing when I'm not there with them,  they aren't alone.

Like many home bound mamas, I like to look into what other mamas are up too. I particularly like looking into what hip mama's have to say. There are some kick ass moms doing amazing things outside of my four walls. I find hip mamas from around the world inspiring and head scratching. Some are just amazingly nuts, but whatever works for you, do it with gusto! You're at least entertaining.

Unfortunately, I went to look up hip mama's and I typed in hot mama dot com. WARNING! Never look up hot mama dot com. Not only are they not hip nor hot, they are infected! My computer had a nasty virus from them and I totally blame the horrible cold I have on them too.

I have been off line for a week and have learned a lesson my carpenter husband reminded me of. Measure twice and cut once can work in many aspects of life. So take a lesson from me, know the address of the sight you want to visit.

Taking care of a family is tiring.  Every parent knows this.
Taking care of a family when one or more of you has a chronic illness is exhausting. Only some of us know what this is like.
"Hospital weeks" feel like a death march on body and soul. I hope there are only a very small handful of you who, like me, knows what this is like.

It's been nearly a year and a half since Little Man had his first Bleed. It's been nearly a year and a half of worry, fear and the loss of dreams. I'm a mama, we tend to lose ourselves with the passing of the placenta.
Mama's are the whole of someone else's needs and we tend to forget or is that ignore own own needs often. Add a baby with medical needs and you are lost.  We've all forgotten to brush our teeth until 11:00am, we don't shower for 3 days at a time and breakfast often consists of finishing up the cold oatmeal the toddler left behind in her bowl. Mmmm, breakfast of champions. 

After Little Man had that first bleed, we spent months going to and from the hospital. One afternoon, Miss S. stopped by. I answered the door a lumpy, smelly, cold oatmeal eating mess. Miss S. is one of my best friends and she did what any true friend would. She sat me down and gave me a lecture, uh. Make that the best advise anyone ever had ever given me...

 Take care Mama! It went something like this...

"What the hell? You look like Amy Winehouse on a good day and you smell like swiss cheese." Can't you just feel the love? "Do you think you're doing anyone any good with this self deprivation?  Well you're not. Go take a shower and for God's sake, brush your teeth before they start dropping out of your mouth." I just stared at her.  "I've got the kids handled.  Go!" She may or may not have muttered something about my being a dumb-ass, and my trepidation was a slight on her parenting and nursing skills.

I worried all the way up the stairs.
And then I started the shower water...
The hot streaming water and the soap washed away the filth made up of anxieties. I then put on a new layer, of fresh clothes that smelt of Tide and not of despair.

When I finally made my way downstairs, I did not find Little Man in the puddle of blood my imagination had me mopping clean. Instead, I found my sweet baby napping in his play-crib . All the while, Fairy Princess glued hearts and glitter onto a paper hat.

After a cup of tea and more "advise" from a mama in the know (years before she thought she might lose one of her own little Monkey Men to illness). Maybe it was the high from the deodorant fumes or the giddiness from the apple blossom scented shampoo, but I vowed take better care of myself. In all honestly, there are days that I don't get to shower until bedtime and I did eat Girl Scout cookies for breakfast, just this morning. But I do shower and I leave the last of the cold oatmeal alone. I am still sleep deprived and overly caffeinated, but the stench of the past is long gone.

Honesty in writing about parenthood has been the main topic of conversation between my dear friend, Little Miss S and myself. She has been worried that she hasn't been honest, funny, herself, real to her readers. Has she been too sweet in the delights of her offspring? After all, who wants to read about a mommy wanting to sell the kids to the gypsies, as my own dear sweet mother used to say. I do!

I want to read about other families struggles along with the daily delights..

In her struggles with this honesty, I learned that I have not been honest myself. Who am I protecting from being offended? Life is a daily struggle of bruises, blood, sibling rivalry and glitter around here. I truly do love my life. If Little Man were "perfect", I wouldn't know myself as I do. I wouldn't know how compassionate Fairy Princess is and Mr. has gone far beyond what I ever expected from him as a daddy and husband. Still, it's really hard around here. I'm jumpy, I worry and I feel resentful that Little Man isn't "perfect"; whatever that is.

So this is a new Black Squirrel from here on out. At least I hope it is. You will still see fairy dreams and garden beauty. This blog is about our life, and our life is more than bruises, blood and fear, but I have to be more honest about all aspects of our life. My life.
Possibly you will enjoy the writing, learn from it and think yourself or someone you know that could use a little help or an extra prayer. You might possibly be offended by what I have to say, and that is ok too.
Maybe what I have to say will get you thinking about the health insurance crises our county has, maybe you will become an advocate for families who cannot afford child care, therefore, cannot afford to have 2 incomes, maybe you will just think before speaking and maybe, you will simply hold the door open for the next mama you see trying to juggle her kids, diaper bag and packages. I hope you will come away from this little blog of mine with a deeper understanding what families who live with chronic illness go through day to day.

So I have to thank a dear friend who has been worried about her own voice. She made me realize that I have been sugar coating my life and my words. This is a new beginning.

Yesterday she made a wish. She made a wish in the special wishing fountain with the magically lit, sky painted ceiling. "Make me a true fairy and give me a pet unicorn to ride", she whispered in that quiet way 5 year olds have, so I could easily hear.

When I tucked her into bed, she said to me, "Now mama, don't worry that I won't be here in the morning. I'll be with the fairies and I'll come back to get you and daddy and Ian to live with me. I promise".  I promise is a very special phrase in this household, we don't make promises lightly. She really meant that she would be living with the fairies and that she would have them to take us all in, as a family.
How could I have the heart not to go along? How could I take her beautiful dream away just then? I couldn't. I accepted her promise and made my own promise. I promised that I would have the fairies bring Flower and Lulu along when they came to bring us to live with them too. I tucked her in tight, gave her extra big hugs and kisses and told her I would see her soon. I promised that I wouldn't worry.

Before I went to bed, I had to check in on her. She was so convinced, I wasn't sure she would still be in her bed. But she was;  cozy with Lulu and her Lovey, looking small and sweet. How disappointed she would be to wake up in her pink room, without wings, and not in a bed of thyme and a flower pillow. She knew the fairies would come and get her. So I left her a fairy pebble and a very small note with a picture of a flower beside her bed. When she did wake this morning, she was sad that they had come to visit and left her without even waking her. But the special pebble and note were proof that they would come and get her soon. "Maybe they need to build a house for us. maybe they need to make space, it's awfully cold for them to be gathering for a home." She tells me that she will talk to them and explain that her daddy is a carpenter and he can build a house for us to live in. And then the fairies will come for her.

One day my baby won't be in her bed, all tucked in with Lulu and her Lovey. I hope that when the time comes, she is living like a fairy with a thyme scented bed and a pillow of flowers.

I predicted Factor, tears and take out calories.
What we got was an 18 month well visit without immunizations.
Hmmm. 
On One hand, I am relieved that we didn't spend an evening in the Hemo. Clinic. On the other, Little Man didn't get his shots because he is too symptomatic just now, and that makes me nervous and sad.
We'll try again in a month. If he is still drippy and bruised, I have to cancel the appointment and make another.

Doesn't it figure that the week I have everything planned out and I have me nerves somewhat in check, we don't have to go? I had it all planned out - 1. Drop my charge off to her own mommy 2. take Fairy Princess to the Tucks, for an evening of grandparent-like spoiling  3. Husband was to meet me at the hospital  4. A feel good, dinner of creamy potato soup, Kentucky biscuits and brownies was waiting to be warmed.
I hadn't noticed how nervous I was until Friday night. I ate more than my fair share of creamy soup and brownies, and I read an entire book. Yes, a full novel from the dedication to 'the end' before turning off my lamp. Granted, it was chick-lit, but still, my mind had to escape to places other than my own.  Saturday woke to a craving for Chinese New Year celebrations. Life goes on and so does my mind.

We will see what happens next month. I'll plan a cozy dinner, grandparent-like fun for Fairy Princess and I'll pick up another light read. Hopefully, with all my planning, we will spend another Friday night at home and a Saturday full of family fun.