Thursday, February 10, 2011

{Trying to Find Solid Ground}


It's been a little while since I last had a spare moment to just simply sit and write.  Oh, goodness do I have a million things I could share with you all today, but I'll try to stick with the condensed version.  Last week Angela, like the majority of people around our area, was sick.  RSV and pneumonia to be exact.  It was no fun for any parties involved.  She was admitted to a hospital we were not comfortable with and it just was a crazy experience.  It's one thing for your children to get sick -- it's an entirely different ballgame when a child, who even though you consider to be your very own -- is really not quite yet, gets sick and put in the hospital.  Let's just pray we never have to do that again.  

Even with the whirlwind of sickness life goes on and all her therapies have started and are in full force.  She receives physical, occupational, vision and speech therapies either once or twice a week.  I'm all for therapy but I have some pretty strong opinions about the chaos is creates in a families life.  I like to question the benefit sometimes -- but for now since we are still learning Angela it has been wonderful and very helpful. Since Angela is turning three in June, we are also beginning the process of transferring her records over to the educational system -- which again brings on many more strong opinions, but for now we are just going with the flow and exploring all of our options.

With all these things happening, we also have been having crazy weather here in the north, which has left us with one shattered back windshield and a missing right side mirror, whose demise is also credited to Mrs. Nature.  Ugh.  We are also in search for a home nurse so that I can go back to work part time with more stable hours and also have a much needed sanity break.  We had an interview set up for this week but she was a no show.  Bummer. On top of everything Angela's current medicaid is dropping her at the end of the month, which basically means we will need to start all over again in the insurance world -- all new letters of medical necessity, a new PCP and another new system to learn.  Oh -- I just can't wait!


So, as you can see the chaos is back in full force.  I'm searching harder than ever for some solid ground to keep me not only sane -- but I just want to remain Karen -- not just a mother with a chaotic life, a mother of a special needs child, or a mother still grieving the loss of her child.  I am a firm believer that there is nothing wrong with that.  I've seen so many families who give up life -- and slowly drown in the special needs world.  Yes, our children need us to be advocates and push them to reach their full potential, but if mommy is drowning, how in the world can I teach my kids to swim?  I'm trying.  I'm holding on to the truths that God has spoken over me.  I'm daily reminding myself that he is my solid ground -- no need to look so hard.  

This has been a crazy road.  It's all pretty much what I expected, but really, let's be honest,  until you're really living in the depths of this reality you can never really comprehend how it changes life.  We are learning everyday -- slowing adapting our world to once again become our new normal.

Even though it's a crazy life, I'm so grateful that God would allow Adam and I to do just this.


Makenzies Miracle said...

I thank you for your honesty! My daughter receives 10 hours of therapy a week and there are weeks that I just want to call it all off but sometimes that is all that keeps me sane.

I have formed very amazing friendships with each and every one of Makenzie's therapists and they are great sounding boards both for stuff going on with Makenzie but also for me and the need to be in conversation and relationship with adults!

It has been almost 4 years since I joined the special needs club. I have finally begun to find a balance between me, my boys, and the special needs my daughter has. It is consuming and it does take time to find solid ground but you will find it!

I am so glad that everyone is feeling better.

Karen Owens said...

I agree! Some of Gavin's old Therapists were great friends and also happen to now be Angela's therapist too!

Chicken aka Emily said...

You don't know me. I'm an adoptive mom and a special needs mom, too, who happened to stumble across your blog a while back and started following it.

I just wanted to thank you for your post today. This morning, I truly felt like I was drowning in mommy/nursing duties, therapy assignments, and the chaos of toddler-hood. And then I sat down and read this post and it helped me find a little bit of my own solid ground. Thank you for reminding me that it's ok to sometimes just want to be me.

Hang in there! Raising a child with special needs is hard enough. But having to juggle the adoption legalities, insurance loopholes, and all the other red tape that comes with parenting a child who is yours in your heart but not quite yet on paper is exhausting! I remember just sitting down and sobbing when my son was in the hospital and I didn't have the legal power to consent without birthparent consent as well. And then again when the Medicaid went away and I had to sort out the insurance on my own. But at least, unlike so many other things, one day all that red tape is done and once it's done, it stays done and you can just be mom.. well, mom and nurse and therapist and advocate and chauffuer and medical billing coding specialist and...

Phyllis said...

It's one thing to take on a special needs child [or two] when you give birth to them and don't really have a say in it. It is another altogether to choose to raise a special needs child like you, Adam and Madi have done. I know you say that you are blessed to have Angela and you are, but you are also amazing people to knowingly step back into the crazy world of therapies and doctors in order to be a family for one lucky little girl. I can't imagine how any other family would take care of her so well. You will find that solid ground because you are someone who is always reflecting and prayerfully considering decisions that you make for yourself and your family. Sorry this is so long.

Shelly said...

Hey Karen, I am a pediatric OT doing early intervention, so I see my kiddos in their homes. Thank you so much for writing this. I can't even imagine how you and all the parents I see deal with all of us coming in and taking over your lives for the time we are there.

One of the things I love is chatting with the parents, to see how they are doing. The great thing about EI is the fact that we do get to come into your homes and be there to support everyone! Sometimes siblings get more OT from me than the kid I'm seeing, just because it's one of those days and they need some love and attention too!

I hope things start coming together soon for you. Angela is so lucky to have found you and your amazing family!

Nathan said...

Gosh, you guys have really been through the ringer this past month! We've been praying for you guys and that all the pieces will fall into place and settle down for you.

gri said...

waooo went read all ur story i curent stop craying and make realise the we r bless because i stil faiting in the hospital with my son with his legs wormers