Darkness always creeps in

     I guess it is slightly reassuring knowing that while I am here watching the pieces of this puzzle called life come together… There is a divine plan. I get frustrated with those center pieces, they don’t give you any idea where things are going. I haven’t put many intricate puzzles together, but I like to see the picture and work from the outside in.

Well God sees the picture, and puts the puzzle together in his own perfect order. To me, it looks confusing: lots of pieces floating in space that aren’t connected and I cannot make out the full picture. I get frustrated and wonder why we can’t do this puzzle in a more logical order, or can I just see the picture so I know what’s going on here.

I know I can get through the tunnel if I see there’s light at the end, and many days I have to fight to get myself up instead of staying curled up in a ball because it’s too dark in here.

Maybe that’s because my perspective is off and I am trying to look at the big picture, which I am not intended to understand, yet. I believe one day it will all be crystal clear, and I will see all the connections and understand why things happened as they did, and how all the pieces fit perfectly together.

My instinct is to cram those pieces together, like a toddler, make them fit, cut off all the corners whatever you have to do.

Oh man, could you imagine trying to put the puzzle together backwards? Where you can’t see any of the picture? I guess it could be worse!


Enough ramblings, here's what's going on...

On one hand, things have been going pretty well, incredibly even. We raised a ton of money at our yard sale. The amount was astounding to me, far beyond my wildest expectations! It has given me the oomph to keep moving forward, and the faith that things will work out. I just have to let go of the reins and let God do things the way he has planned. It’s easier said than done, I am a control freak after all.

On the other hand, I am struggling with a few things all at once. Keegan got sick almost two months ago, got better, got sick again, and got better again. But he isn’t eating. Normally he will not eat well for a short amount of time before and after he gets sick. He hasn’t eaten normally in about two months. This has been torture, torture for Keegan, torture for me. We are at our wits end. Then I was bold and asked questions when we saw the neurologist that I have been afraid to ask. I didn’t really get any clear answers, nor did I get any hope.

Keegan is severely developmentally delayed. I would say his developmental age ranges from six to twelve months, give or take. I always thought when he was two that being a year behind wasn’t that bad. When he was three, he was only two or so years behind. When he was four, he was only three years behind. What will it matter when he is thirty if he is three or four years behind anyway? Well, he will be six in June, and that gap is growing wider every year.

Do I push harder?

Get him in as many therapies as many days and hours possible?

Will that help bridge this gap?

Thus far… no.

So I asked the doctor if there was any way to know what he could be capable of, and what he simply isn’t going to be able to do. So far nobody has limited him in any way, aside from saying he is completely  blind (you can read about that in our previous blog). I am starting to wonder if that is because they didn’t think I could handle the news. I always expected he would be walking and talking by now. Every year around his birthday, life is a little hard for me. I cross another year off the list, assess the damage, realize what Keegan “should” be doing at this age that he doesn’t, stare at the huge gap. I’ve never seen the Grand Canyon but I am desperately fighting to keep that gap smaller than the Grand Canyon.

I am not a negative person. I can find a positive in just about any situation. So if you have never experienced this don’t take it the wrong way. I try just as desperately to appreciate the positives, to recognize the small gains. I think anyone with kids can admit they have huge dreams for them. I can’t seem to let go of those dreams for Keegan. 

 What’s the alternative?

I don’t know if I am supposed to keep fighting. I don’t know how to not fight. Because I will fight until I am gasping for air and collapse to the ground.

 I am really stubborn.

If you are keeping an inventory, mark that one in large letters. The idea of giving up those dreams is even more heartbreaking than the thought of them not coming true, in this life.

It’s a lot of pressure to be the only person who can care for him. Keegan’s biological dad isn’t actively involved in his life, and has never taken any great interest in him. My husband, his dad, loves him and is amazingly supportive. He helps out, as do some family and friends. I don’t want to take away from that in any way.  I don’t believe anyone else feels the kind of pressure I do, so I am only speaking from my experience. I could not leave him in the (permanent) care of someone else, nobody else is going to care about him the way that I do.  I take him to his appointments. I sit with him every night he is in the hospital. I spend hours making his food. There are many things I am able to let others do, I just don’t believe anyone would be able to be me. So it’s not like I can just give up.

My biggest fear is that nothing will change. I wish I could fast forward and see where things are going. I don’t feel like I can continue on this way for years on end with no change.

What’s the purpose in that?

The one thing I can find comfort in is that one day he will be able to do all of these things he isn’t able to. One day he will see, and speak, and walk, and EVERYTHING.

That doesn’t always make things easier right here and now. That doesn’t give me any answers either.

Anyway, back to our appointment; the neurologist recommended we see someone where they have had the opportunity to track conditions like his for many years. We are looking to go to UCSF. He thinks they might be able to do more tests to give us an idea of what Keegan may be capable of, or at least have more information. He also urged us to attend the convention In Chicago, in hopes of finding some answers. I want answers, I don’t just want to give him some medication and dope him up. I don’t want to see doctors every three months just to say hello and get a prescription. I would love to see a doctor who can tell me something instead of always telling them everything.

I am also getting a referral to see a GI doctor, which terrifies me. I have been fighting to keep Keegan from needing a G-tube since he was born. We’ve narrowly escaped its clutches so many times. I started to think we were all clear but it keeps sneaking back up on me. Keegan was scheduled to have surgery for a G-tube when he was about two weeks old. I went to visit Keegan the day of his planned surgery and the Endocrinologist came during her rounds and told them to wait. Lab results came back that his growth hormones were low. She recommended he start GH replacement, and that many times she’s seen kids perk up and eat. It would take a few days to get the medicine, I would have to be trained to give him the injection, and it should start to work in a few days. So I held off on the surgery, and he did start eating more. Eventually they took the tube out of his nose, and we were released! I was so relieved! I never thought I would hear G-tube again! Since then it’s been mentioned several times. Every time I hunker down and start beefing up Keegan’s meals with calories and supplement with as much pediasure as we can. I have been waging war against the G-tube for almost six years and I feel defeated to even consider it.  The alternative is getting too ugly.

Keegan Will. Not. Eat. Rather Keegan Will. Not. Eat. Well.

He will usually eat at least one meal, or maybe two halves, or a few bites each time you try. Usually. There are also the days where he flat out Will. Not. Eat. Period.

I felt like I would get hauled away for child abuse because I have to hold his arms down, plug his nose, hope he would unclench his jaw and open his mouth just a tiny bit so I could force a spoonful of food in. Then I have to cover his mouth so he can’t spit it back out. All of this just to get his medicine in. During which, he’s thrashing and crying and yelling at me. I am yelling (in my head) and crying and reasoning and pleading with him.

If he doesn’t get his medications he will end up in the hospital again, or worse.

So I don’t really have a choice, but I feel like a horrible mother.

 This happens every day. It’s been pretty miserable around meal times, and I get so anxious. I don’t even want to feed him anymore. I had a great conversation with friends who have been through a similar situation and chose to have the surgery. They said it was a very positive experience for them; they had many of the same concerns and feelings I do. They were also very happy once they did, and it was such a relief. So I am cautiously considering it, getting more information, and trying to be open-minded. I have to change my perception of this evil lurking G-tube, because it might just be what rescues us from this dark place.

I am glad we held out for as long as we did. I don’t think doing it any of the other times was for the right reasons. Most of the time all we needed was a little creativity and a lot of diligence to get Keegan to gain some weight. The other big excuse was that we can get pediasure through our insurance with a G-tube, but cannot without one. Pediasure gets pretty costly when you have three or more a day! That whole bit really infuriates me! We are at a point now where there isn’t any amount of creativity or hard work that will solve this.

I am optimistically hoping things will calm down and the rest of the journey to Chicago can be smooth… At least on Keegan’s end.

As always we appreciate your thoughts and prayers.