Jeremiah 29:11

"For I know the plans I have for you," says the Lord. "Plans to prosper you, and not to harm you. Plans for a hope and a future."

Tuesday, October 18, 2011

Progress

"Progress, of the best kind, is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step." ~Samuel Smiles

Progress is progress....right?

Ever wonder why we push so hard to make sure we're always first? Is it really always that important?

Many times the faster the progress, the better......

I'm learning, though, that there is something bittersweet about slow progress.

This time last year, Zeta was in the hospital (again) fighting for her life. The whole admission lasted almost 2 months and she ended up with a trach in order to survive. There were times during that admission that I can honestly say devastated us, but there were also times we were ecstatic.....

I remember after she was trached and I finally got to hold her (she had been very ill and sedated for almost a month). I began crying uncontrollably when the respiratory therapist handed her to me. He (the RT) told me that it would be ok - that we would get used to the trach. Only, I told him, he didn't understand that I was crying tears of great joy. I realized that Zeta had made it through another obstacle. The progress had been slow, and it wasn't what we would have wanted or expected at the time, but our baby was breathing. She was awake, alive, and breathing, and she was not struggling to take each breath. Yes, it was progress. Yes, I cried tears of joy!

Lately, I realize just how much progress we have made.

Zeta has not had a 'sick' hospital admission since the beginning of July - that was 3 months ago. Prior to that she had only made it about a month out of the hospital - and only twice had she accomplished that feat......So, yes, 3 months without a sick hospital admission is excellent progress!!

She has recently experienced some small breakthrough seizure activity and experienced some ups and downs with her health (for instance, a mosquito bite can make her quite ill) BUT through every illness she has experienced since her brain surgery, we have- fortunately- avoided the hospital!! Now THAT's progress!

This past week we have been talking with doctors about the steps necessary to begin weaning Zeta from the vent and toward downsizing her trach. Granted, this is just talk right now, and the process itself could take a year or more - but hey, that's progress.....

We have made progress as a family this year. I would like to say that we take a lot less for granted!



I realize just how much the 'little' things mean. I understand that what may be progress to me may not mean anything at all to someone else. I think I realize these things more because I have two special boys that are typical and a special little girl that is anything but......

I've always tried to teach my children how important it is to love one another and to respect people and our differences. I realize now that I've never had a complete understanding of just how important it is..... I'm not just talking about children with special needs....I'm talking about anyone that is different from me......anyone that seems to be having a bad day.....anyone that is angry......ANYONE that doesn't fit MY EXPECTATIONS.........

I would like to think that every single one of us possesses intrinsic good in our hearts. After all, God made each and every one of us. I suppose that is why it is so easy for me to get emotionally involved. We all have problems. We all have ups and downs. We all have a story. Just because someone doesn't meet our expectations or because they don't seem to be making, what we consider, progress does not mean that we get to write them off.......

Example #1:

I have a friend that works with underprivileged children. Her husband asks, "Do you really think you can save them all?"

When you look at it that way it is easy to become overwhelmed and give up on even attempting to try to help the situation. But, when I think about my daughter and how that scenario could easily be(and at times probably has been) transferred to her situation it really makes me think.....What if all doctors assumed that it was pointless to work on trying to save a child with so many health issues....to ME it's a huge deal....now imagine....WHAT IF IT WERE YOUR CHILD? Would it make a difference then? Don't you think that if my friend can help even one underprivileged child then it's worth it?

Example #2:

I have a friend that is not a 'hugger'. Sometimes, this is very hard for me to comprehend because I'm pretty touchy-feely, although I try to respect those who are not. There have been times that I've thought that non-huggers must be kind of, let's say, non-caring. In reality I understand that this is not true. It truly hit home for me last week. My friend told me that I should feel good because I'm a hugger. She told me to imagine NOT being a hugger (like her). She said that she could not remember the last time someone just hugged her and told her it would be ok. In some ways, I know (or at least I think) she was craving this contact, but for her a hug would mean the possibility of openly expressing emotion (crying) and that might indicate weakness. I understand that completely. So I will try to be better about at least offering a word of comfort or maybe just a kind word every now and then to let her know I'm thinking of her (and yes I'm going to sneak a hug in there next time I see her too:)



We all feel like the world is caving in on us sometimes. Sometimes we accept it and try to move on. Sometimes we just get stuck. We all deal in different ways. When I'm having an especially difficult time I absolutely will NOT talk on the phone - weird I know, but true (oh, and I can consume BAGS of Reeses during those times too). It doesn't mean that I don't appreciate anyone who is trying to talk to me, it just means I don't know how to handle the emotions of it all at that particular time. I guess it's kind of the same with non-huggers, or the people who scream profanities, or those who transfer their anger to whomever happens to be around. Yes, we all handle things differently.... My hope is that I can always try to remember to take that into consideration when encountering someone that I feel hasn't made the progress that he/she should (ie doesn't progress in the way I expect)......

Always remember.....progress IS progress....and change can be beneficial.....things may not always go the way we plan or the way that we want, but without change there is not progress....without the experiences that life affords us we may never reach our full potential.....and without faith we may not even recognize the progress that we have made........

"Don't wait until everything is just right. It will never be perfect. There will always be challenges, obstacles and less than perfect conditions. So what. Get started now. With each step you take, you will grow stronger and stronger, more and more skilled, more and more self-confident and more and more successful." ~Mark Victor Hansen

Wednesday, October 5, 2011

Being infinitely patient means having an absolute knowing
 that you're in vibrational harmony with the all-creating force
 that intended you here. You know that everything will happen
 at just the right time, at just the right place, with just the right people.
 Dr. Wayne Dyer

Wait for the Lord; be strong
and let your heart take
courage; yes, wait for the
Lord.
Psalm 27:14


I've officially let Zeta get rid of her no-no's

Only I think she may have thought it was a trick.....She wasn't very sure whether or not she should put her fingers in her mouth.

It didn't take her long to change her mind though.





I spend a lot of time pondering the meaning of a print in my kitchen.......

At some point I thought that I had at least some understanding of how to make things simple....

If life were really simple, I would not rack my brain every day trying to figure out what the latest research says about microcephaly, blindness, developmental delays, chronic illness, seizures, rare multiple congenital anomalies and a host of other baffling medical issues.

If life were simple, I would not be counting the days and weeks between hospital admissions.  I would not worry because we don't have an official name for whatever is happening with our baby.

I would not have that little voice in my head - the one that I hear every time I hear about a new pregnancy.  The one that tells me I must pray relentlessly that this child and family will not encounter the circumstance of anything less than perfect health.

I would not avoid answering the phone when it rings.  I would be able to have a normal conversation with a friend.

If life were simple, I would not fall apart when my husband walks through the door if I've been home alone all day.

If life were simple, I would not spend nights watching each child sleep and  then crying over what could have been or how I've messed up in some way.  I would not worry that each of them is getting the nurturing love and attention they each so richly deserve. I would not worry that each ache or pain could possibly be life threatening, and I wouldn't worry that they have been just as deeply affected by our experiences as I.

No life is not simple.

Not just for me - but for any of us.  We all have days like this.  Granted, some more than others. BUT when you have a problem or a difficult circumstance it IS THE MOST IMPORTANT and the worst possible thing that could be....because it affects YOU, YOUR child, or YOUR family........and then life isn't so simple anymore....

God never promised easy, BUT He does promise never to forsake us.

"Be anxious for nothing,
but in everything by prayer
and supplication with thanksgiving
let your requests be made known to God.
And the peace of God,
which surpasses all comprehension,
shall guard your hearts
and your minds in Christ Jesus."
Philippians 4:6-7

The foundation many have worked to build under me has given me the assurance that I can place my faith in the Lord.  I pray because I have to....I also pray because I want to..... I pray because it gives me solace.  I pray because it strengthens my faith.  Funny thing is....Faith has also strengthened my prayer life. 

Above all, PRAYER SIMPLIFIES THINGS.......

How much more simple can you get than to give it to the One to which it belongs....just as our lives are not our own or problems are not all our own either.




If I CHOOSE to spend every waking moment wrapped in fear.....If I CHOOSE to question every single thing that has happened in my life.....If I CHOOSE to be timid - I LOSE.  Life loses it simplicity and I simply become wrapped up in all of the what ifs.....

For God has not given us a
spirit of timidity, but of power
and love and discipline
2 Timothy 1:7


I tell myself each day I HAVE to CHOOSE to simplify..........
THIS is why -

Isaiah 40:29
He (God) gives strength to
the weary, and to him who
lacks might He increases
power.