Unexpected Blessings

Let the young rain of tears come,

Let the calm hands of grief come.

It's not all as evil as you think.

~Rolf Jacobsen

I don’t quite know where to start.

After the information I shared in my last post I’m at a loss for words myself. I’m still kind of shocked that I shared such a personal experience to the world, but I’m glad that I did. 

The least I can do is thank everyone for their heartfelt words and prayers of encouragement.  I don’t know where our family would be without the firm foundation of support we rely on so much!

This whole month has been filled with ups and downs!  Of course, in life I suppose that’s nothing really new.  Zeta has continued to have less than great health.  Nothing crazy, but enough to disrupt her respiratory status at times and increase her seizure activity.  The culprit seems to be her ears.  In all honesty, I don’t think she has made it back to her completely “good’ status since her big seizures back in March.  We’ve been in discussion with neurology and are consulting with her team in Phoenix too.  In theory, we should be traveling back to Phoenix for her one- year follow-up from surgery….but unless they can do something life altering there that can’t be done here, I just don’t see putting Zeta through another medical flight and all that goes along with getting her across the country.  It goes without saying though, if they were to call and tell me that they had another magical fix we would be on the next flight out there.  We were blessed to see Zeta in the best health ever for a few months after surgery…..My prayer is that we’re able to get to that point again!

In the meantime, we’ve stopped her immunizations again (another reason to keep her confined) and have drastically reduced her therapy schedules. In reality, she hasn’t been able to attend therapy as scheduled for a few months due to her health, but we’re trying to eliminate as much stress for her as possible.  This has been a hard step for me.  With my early childhood background, all I can think is repetition, intervention, education……..what I really need to accept is that we have to get her healthy first….and then we’re going to take it slow……

We met with the the geneticist (only a 3 hour appointment) again this month and had the labs drawn to go to Baylor for the Whole Exome Sequencing.  It will take four months to get the results back.  Hopefully, we will gain some useful information from this. We’ve also scheduled Zeta’s next surgery.  Nothing major, just the annual airway stuff and they’re going to place a broviac (in simple terms it’s a permanent type of access for blood draws, medications,etc.)  There have been various times we’ve been in discussion about Zeta keeping a line in for home use.  The pros are that we’ll have more permanent access so that means less needle sticks for Zeta, and we plan to utilize the access to facilitate her staying out of the hospital more.  The big drawback is the risk of infection.  I think that is the major thing that has kept us from coming home with a line in the past (that and the fact that we’ve never really had a definitive diagnosis and the hope has always been that eventually she would not always need all the medical care she requires). This should all be a simple, overnight stay, but please be in prayer for Zeta…for the doctors and staff….for our family. I keep telling myself, “It’s not brain surgery.”…..but in Zeta time it has been a while since she has been under anesthesia and I’m getting myself a bit all worked up over it!

In the rest of our real life – Steven contracted cellulitis in his leg somehow so we spent Sunday at Doctors care.  Of course, all I could imagine is the flesh eating bacteria that has been all over the news lately.  Thankfully, though, the antibiotics seem to be working and his leg is looking better. By Monday, Chancelor had a fever and a sore throat.  I just had to laugh (he’s ok)…….but I had to laugh, and then THANK GOD that I don’t have 3 chronically ill children!  I realize every day that in comparison to many others we live a very blessed life, but that doesn’t mean that there aren’t moments every day that overwhelm me. 

I’m still working on me.  Some days are great.  Some days, I don’t want to get out of bed.  Every day, I feel selfish for how I’m feeling and I feel guilty for everything that everyone else does for me.  Every day, I try to remind myself of how good we really have it.  Every day, I look at how much everyone around us strives to make our life the best that it can be…..and EVERY day…………..I’M THANKFUL.  Regardless of how many ‘why me’ moments I have- I KNOW that I’m blessed.  I know that God has given me the gift of LOVE, the gift of FAITH, the gift of HOPE, and the gift of another day with all those that I love.  My prayer is that I never lose sight of this….what is truly important!

The last of the human freedoms is to choose one's attitude in any given set of circumstances.

~Victor Frankl