Thursday, May 9, 2013

Faith in the Fish Bowl of a Suffering Child

Faith in the Fish Bowl of a Suffering Child 
By Candace Segrove 

Few people can understand 
The constant torture of the soul 
That is endured by a parent 
Watching, waiting, watching, waiting 
Your child suffering into the night 
Fearing the morning light 
Or what a new horizon may bring 
The ways you learn to overcome
The daily gnawing of your heart
Of unanswered questions
And incurable disease and disorder
How can faith begin to compensate
For the courage you have to muster
Just to hold your baby
perhaps a moment longer
And hold back your tears,
so you can live
And just function
And give all your love to this child
Wonderful child
To pray... yet, another prayer
Wave upon waves of unending prayers...
To feed them
and clean them
And serve them each hour
And still believe in Gods power
To intervene in miraculous ways
That is the type of faith that is tried by fire and sticks like glue
Not many people will understand
Nor be able to do
What you do ... What we do
But i still believe, if I reach deep down
God must see every sacrifice
and each tear in the night?
Each time that I cry?
Each question and each "why"
And each time I choose to believe
In a God that is present and loving and wise
Who still loves us when it seems
He has turned aside
From looking at us
Kept His favor from us
Finding it harder and harder to trust
Swimming in pain
no escaping the routine
The cycle of heartbreak and exhaustion that each day brings
The innocence of a face that glows everywhere it goes
As if there is something beyond what we know
I'm searching for treasure
as each shipwrecked day starts
But I'm finding that Hope
is as rare as gold in these parts

the pressure cooker of life

Daily life has been feeling like a pressure cooker for us... there's so much going on it's hard to even know where to begin, I suppose that's partly why I've been avoiding posting an update.. just seems like too much to write about. The 5th anniversary of Grandpa Edmond's death was in March, as well as Adonis' grandmother passed away to be with the Lord at the end of this March. This has been a big adjustment for the whole family in grieving the loss of their mother and grandmother and great grandmother... Uncle Bob has had to move out of the apartment complex, but lives close and still comes to watch Edmond during the day at our apartment for now. He is a true blessing for us in being faithful to help us with Edmond as well as Grandma Vernie and Grandma Liz and the rest of our family.

 I think I will do some bullet points for the rest of this update.

  • On a good note, Edmond was deemed eligible for Medi-Cal and was approved for 40 hours of nursing care a week. On the flip side, the first nurse was elderly and appeared a little disabled herself in getting around, so I couldn't hire her for Edmond. The 2nd and 3rd nurse I interviewed were great but then they both didn't want to take Edmond's case, one didn't give a reason and the other said it was too much lifting. So that was discouraging. We are still having to interview other nurses. 
  • Another option I am exploring is having Uncle Bob and Grandma Liz care for Edmond and be paid by In Home Support Services and just completely forego the nursing care. I just had an intake interview with IHSS and will be hearing from a social worker to assess Edmond within 8 weeks time frame. This may be a better fit for all of us, especially since I'm having less faith in the nursing system, but if we ever needed to reinstate nurses or use them part-time we could. And no one could love Edmond more than our family does, so we would know he is getting the best care... as well as the fact that our relative can also keep an eye on our other kids and a nurse is not able to do so. 
  • Edmond is doing really well with his GTube. We switched to overnight formula feeds, which has made feeding a great deal easier on us since we just run the pump slowly over 10 hours at night. In the morning Edmond has already had half of his calories he needs for the day and we can easily give him flush feeds of 4 oz of water at a time through his GTube and feed him pureed. He has a better appetite during the day now and is more alert too, so it's a good fit for him and for us.
  • Seizure activity has not climbed but he is still at 3-5 daily and some days seizure free. They are very short, about a minute or less and he will rest for a while or sleep and then be awake again, so they are not interrupting the whole day. We have had trouble this month getting the feeding bags and formula refill through our insurance and I"m not sure what the hold up is, but it's been anxiety producing since we rely on these supplies to keep Edmond nourished. THey sent me a few feeding bags to tie us over until everything get's authorized. It's alot of coordinating on a weekly basis for things. 
  • As of June 1, Adonis health insurance plan premium is going to quadruple to $460 a month, since his company suddenly switched providers. We only had Eden on with Adonis, but we were planning on adding the new baby too, and it would have been reasonable to do this with the old plan, but not anymore. Edmond is on my insurance, and mine is reasonable but if I add another dependent, mine also quadruples to $480 a month, and I cant switch to Kaiser which would be only $200 a month for all of us, until Open Enrollment in January. On top of this I am only working until July or August and then going on pregnancy disability to have the baby... so we will have less money per month, along with these large premiums to cover... a little stressful, we just gotta tightly budget I guess until January, just trusting it will work out. 
  • We will definitely need to get a mini van sooner than later and are just trying to figure out what would be best for our family to do. With the new baby on the way, time is ticking and we wont be able to go anywhere as a whole family without a larger car. The car Adonis uses is on loan from Grandma Liz, but it is on it's last legs, so we continue to need another vehicle and soon. 
  • The apartment downstairs is being remodeled now and we will probably move down there in the next few months so that we don't have to climb stairs with Edmond and his equipment anymore and plus we will have 3 little ones, so easy access is better altogether. 
  • We were able to get a pediatric wheelchair on loan from California Children Services. I'll post the picture in here. I'm told the vendor has finally ordered our feeding chair and bath chair, after a huge mix up and miscommunication that needed to be sorted out... which is why we still have no medical equipment for Edmond, it's crazy how incompetent people are, and your kid has special needs!!... makes me wonder why are they working in this line of work. We have an appointment on the 16th to have him fitted for his own wheelchair as well. He is outgrowing his stroller and I had an incident where we took him with us to the movies with Eden and the little 20 year old manager came out and had to speak to us about the "No stroller policy" but allowed us to go in since Edmond is disabled, but then stated... "just bring a wheelchair next time".... well I almost gave him a piece of my mind and Adonis had to steer me away... it's not easy to get a wheelchair for your child, which we have had to learn the hard way and for some young punk to casually say that to me... as if I could run to Walgreens and pick one up, that was a little hard to handle at the moment, we had a good time at the movies though. But it will be better when Edmond can be in his own medical chair. 
  • Next week we are going to San Jose to check out a stander for Edmond that we can borrow from a non profit called, who lend out used medical equipment to families.. this will help Edmond to put some weight on his legs and see how that feels for him. We have to see if he fits in it, and then we have to consider if it will fit in our house, alot of equipment is really large. 
  • My job is unbelievably stressful and coordinating all of the above on top of working full time, including my own prenatal care appointments has been extremely difficult for me. Keep me in prayer, it really is overwhelming and some days I feel unable to get through the pressure and just am pretty much in survival mode. My doctor wants to put me out in July to help with stress relief, but I just learned that I will not have my full protected family leave if I go out any sooner than 2 weeks before my due date of August 20th, because I haven't worked 1250 hours since I came back from my leave from caring for Edmond. But at this point I dont think I can make it to August and will have to leave in July, it's really just too crazy to juggle everything... and just figure it out as I go... hopefully my job will approve the leave that I request... I really need favor with this. I am praying for a way that I wont have to work for very much longer in my current profession... it's too taxing and too intense and I need my energy to fight battles for Edmond and just care for my family. Thanks for reading about our family and Edmond. -Candace