Gah!

Something I might not have shared with you in the past is that, in the past, I have suffered from crippling panic attacks. It has been a while since I feared them but, this past week, that has changed.

Out of the blue, this past Tuesday I had a full blown attack. It popped up, seemingly, out of nowhere. I was so thankful that Isabella wasn’t with me as I have no idea how she might have reacted to her Booboo freaking out.

What does one of these attacks look like for me? The pressure in my chest makes me fear a heart attack. Sometimes some pain in my left arm almost convinces me. I tend to feel very hot. I believe I said out loud, “Oh, dear God, help me!” I left my seat in the living room and walked to the kitchen where I held on to the counter for dear life and remembered my training from the Claire Weekes book Hope and Help for Your Nerves .

Self talk:

You are having a panic attack
You have survived them before.
Accept that you are having this panic attack
Your heart is a very strong muscle and it will not explode.
Breathe and float through it.

Sounds too simple, right? Well, it took years for me to be able to work through this. Still, it is a horrible experience.

Why am I talking about this? Why do I talk about most things? To get the word out that we are not alone with our ills and heartaches. I could write about only rosey, wonderful things happening in my life and you could say, “Oh, what a lovely life she has!” Well, I do have a pretty good life but it is not all flowers and butterflys! It has ugliness in it. However, I always have hope.

Hope. How glorious is hope?! I know that this earthly shell is temporary and that I have a heavenly home being prepared for me. When I get there, I will not have panic attacks or fibromyalgia or weight issues. My Isabella will join me there and her autism will be left behind (Or maybe not because her autism is part of what makes her so special). My grammy, whose Parkinson’s stole her expressive face, will greet me with her smile. Oh, what a wonderful hope!

Early, Very Early

Another change 2014 brought was my early risings (five’ish) on days that my Isabella is here by 6:30 AM.

I have been caring for my precious girl since she is an infant and it has always been my wont to sleep as late as possible.  This meant that I didn’t spend time with God until she was off to school nearly two hours later.

This is not the perfect way to start the day.

Ask my mom and she will tell you that, from the cradle, I have not woken up well.  It is best to stay away for at least a half hour.  However, my new routine has changed that…..on the four to five days a week Bells is with me.

With hot tea in hand, I go to my desk and start writing out my prayers (this keeps my attention on what I am doing) and reading my Bible.  Sometimes I work on a Bible study.  Saturdays I pray for everyone in the church directory (we have a small church).  Daily, I pray for family and missionaries I have a relationship with.

Not that time spent with God is limited to the waking hours.  It is an all day event.  However, time spent alone, in the dark, is the sweetest time of the day.

(almost) Unbearable

When we decide to have children, we think of precious newborns, inquisitive toddlers, cuteness and innocence. What we don’t think of is an emerging human being with opinions and weaknesses, rebellion and pain.

Seeing one of my children or my granddaughter in pain can do me in. There are times I think it is unbearable. Even prayer and reading the Word of God can have little effect…or so I think…

Last week, there was a night I thought I was going to break, literally. A number of years ago, I was hospitalized (my choice) for depression and anxiety but have grown enough in knowledge and faith to be able to stand up to the demons that plague me.

My precious granddaughter has been going through a rough time and I became so upset that I felt like nothing could bring me strength. People are praying about the situation and there is comfort in that but I was about to crack.

For several months, I have been writing out my prayers so I went to my prayer spot and cried out my pain and the injustice of what is happening to my girl. I reminded God of His promises to those who love Him and trust Him. I laid it all on His broad, broad shoulders.

And I slept well for the first time in a very long time.

Awareness…nah

It’s that time again…Autism Awareness Month. Uh, I do believe that most of the people in the literate world are well aware of autism.

What we need to work on is acceptance and education.

One of my favorite autism bloggers, Jess Wilson of A Diary of a Mom, has taught me that age appropriate is just words. That is why I purchased a Baby Einstein Baby Neptune toy for my granddaughter who is eight years old. She loves it.

Jess has also taught me that wherever my girl is is just fine with me. She doesn’t have to fit in. She doesn’t have to fit a mold.

My Isabella is fun and smart and loving. She puts on a brave face all day long and, sometimes, cries at night to release all the tension she has from putting on that brave face. My girl is one of the strongest people I have ever met and I admire her grit. A

Accept people where they are at. Learn what they are all about.

Life Goes On

The last few weeks have flashed by in a whirlwind.

The Girl and Bells moved into a new place close by and we helped with that. Exhausting for all involved and we are hoping for the best.

Establishing Isabella in her new schedule at school has been difficult. Instead of being in the contained classroom all day, she has been entering school with the “neuro-typical” (N.T.) class (e.g. regular kindergarten class) and doing all her specials (library, phys. ed., music, etc.) with that class whilst doing her academics in the contained (autism) classroom. Her teacher from last year and the child study team leader felt she was ready for this. However, our nearly always happy girl has shown anxiety like never before.

Fortunately, her child study team leader saw her crying when she was leaving the gym one day and Bells was able to express that it was too noisy and too many kids and whatever else was bothering her. As a result, the team leader was able to ascertain which specials Bells felt comfortable. Things are going a bit better now. Maybe one more week will show a greater change. I want my happy girl back.<ins datetime=”2011-10-16T22:36:47+00:00″>

Yesterday, I gave Himself the day off and went to a wedding and reception with some friends. You know, I just might make a habit of this! We have gone to so many wedding receptions because of the number of children his friends have that it tends to get old. He is older than I am and some of MY friends’ children are of marrying age now. If he isn’t friends as a couple with my friends I will probably go the weddings by myself!

With all that has been going on, I am beat. When you don’t give in to the fatique of fibromyalgia, it will bite you in the bum. Today has been a true day of rest as in staying in bed until mid afternoon and doing no work at all. It’s a crazy balancing act but at least I am not experiencing a lot of pain. Yea! (That was last week when I didn’t give in! Flat on my back and sleeping for a day but that’s okay.)

All in all, life hasn’t been all that bad. Our bellies are full, we have clothing on our backs, a roof over our heads and a loving Father in heaven who meets all our needs.

Blessings to all, g

A Walk in the, uh, College Campus

Yesterday, we walked for Autism Speaks. The organization is not perfect but it a big help for families dealing with the autism spectrum.

As the team captain, the weeks leading up to the walk are stressful to me. I did nowhere near as much fundraising through sponsors as I did last year as I was paralyzed by what I saw as the immensity of it. It really isn’t a big deal but, in my mind, it was of gargantuan proportions.

Last week, not only did my fms flare but my ibs decided to come along for the ride. Ugh. I am so thankful that I was able to nap and function well enough to do what I had to do.

Our team Isabella came out beautifully! The girl wanted pink but I put my foot down and we settled on orchid (pale purple). A couple of the guys were not thrilled but real men do wear purple!

How wonderful it was to have both our side of the family, Isabella’s dad’s side of the family and dear friends join us in support of our girl! Even my mother-in-love, who has issues with her legs, joined us in a wheelchair for the second year in a row! It was wonderful to push her along the 1.6 mile route.

After the walk, most of us broke bread at a local eatery and continued our fellowship and good time. Our girl, Bells, did so very well. We couldn’t be prouder.

Will we walk again next year? As long as children are newly diagnosed, we have the strength and we are able, yes. Will I get all worked up? Probably. Let’s just hope I start earlier and get more productive with corporate sponsorship!

blessings to all, g

Mother’s Day and Such

It is just after 10:30 PM this Mother’s Day of 2011. It was a good day.

Himself and I grabbed a bite last night – although we had to leave because the place we chose was so crowded I got overwhelmed and we had to take the meal to go. It was better at home anyway!

After church, I started to prepare the meal I am going to serve my parents when they visit tomorrow. We so rarely get to see each other and I want to have something special for them. Sunday afternoons are usually for napping but we had to go to Himself’s mom’s house. It was so good to see everyone there.

Isabella, at age five, is the oldest of the great-grandchildren. Her cousin Giuliana is just thirteen months old and cousin Tyler is just four weeks old. My poor Bells was so upset at not being the center of attention. When I picked up Tyler, the look on my girl’s face was like I had put a knife through her heart.

We sometimes expect to be able to reason with our girl as we would an NT (neuro-typical) child but often we can’t. What is going on in her mind; her intelligent, wonderful, complex mind? How does she process what she sees and hears? Is she acting like a brat or like a hurt child unable to understand that our love for other children will never take away from our love for her?

There is a very loaded question in the autism community: if you could take away your child’s autism, would you? Some say a resounding, “No!” as if you are insulting their child. Those who are on the spectrum and can answer for themselves often say no.

For the parents and families of people with autism who can not communicate or are afflicted with anxiety and frustration, there is often a resounding, “Yes!”

Would I take away Isabella’s autism if I could? Get back to me in a few years when she is no longer an adorable five year old; when other kids can hurt her more than they can now; when she realizes she is “different.” I’ll let you know then.

For now, I will love her and hug her and joyfully swim in the wonder of her hugs and kisses and her requests to sit with me, sitting so closely I can’t tell where she begins and I end. I will hope that she never stops calling me Booboo replacing this special name with the generic names grandmothers go by because Booboo makes me feel special. I will walk to raise money to help others on the spectrum. I will advocate and go to meetings at school and support my daughter as best I can on this journey.

I am not a saint. I am a tired, worn out mom and grandmother not always trying my best but doing what I can when I can. There are times when I just sit and play on my netbook or watch tv and knit. I give myself permission to be lazy whenever possible. Thankfully, my best is good enough for Bells. And that is what matters.