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The Waiting Place

There is a family that is dear to my heart. They recently announced that they feel that God wants them to move. They don’t know where to, but they know, after much confirmation from prayer and Bible reading, that God is sending them somewhere. The husband has stepped down from his job and they have listed their house for sale. (It sounds insane, I know) They are blogging about their journey over at The Wading Pool and I’ve been reading along as their journey progresses, secretly hoping that it’s just a big test and they won’t actually be leaving us for new things. Several posts lately have focused on their waiting; waiting for affirmation, waiting for the house to sell, waiting to see where they will go next. So, I was praying for them, because, I, of all people, know the agony of waiting for God to reveal His next steps, when it occurs to me, ” I should share with her that I know exactly how she is feeling and just let her know that she’s not alone.”

I don’t like to just sit down and type. I have to plan ahead exactly what I want to say… and then I usually revise my writings at least 3 times. So there I am, going about my day, distractedly planning my note to this friend, when it occurs to me that maybe someone else out there needs to know that they aren’t the only one waiting on God.

I start revising my note again. This time it is a blog post and it is going to list all of the things that we are currently waiting on God to do, when God derails my train of thought.

Sometimes God says to us “I’m going to do something amazing! Keep your eyes on me so that you don’t miss it.” And we, being the awesome children that we are, we hear “My Daddy is going to solve this problem for me by doing exactly what I dream of in exactly the way that I dream it will happen.” We take our eyes off of him, we watch down the road in the direction that we think the awesome thing is coming from, and we miss what God had planned.

For example: (Go ahead and grab a tissue.)

I’ve mentioned on here a few times, that when Matthew was a few days old and clinging to life, the doctors asked us to choose if we wanted this difficult life for him or if we wanted to let him peacefully drift off to heaven. And, I’ve also mentioned, that we prayed. We prayed hard and felt very strongly that God had big plans for Matthew.  So we fought for him and we still fight for him and we wait for this ‘big thing’. We wait, because when we heard God say “I have plans for him”, what we really heard was “I’m going to heal him and he’s going to walk and talk and no one will ever believe that he suffered a traumatic brain injury”. So here I am, planning a blog post in which I say that we are still waiting on God to do this miraculous healing when He replays a scene in my mind.

Rusty and I have just left the hospital, after hours of meeting with doctors and crying over our son, whose buried behind machines and lines, and we are exhausted and confused. In a haze, we wander into a Taco Bell, where we sit and talk and don’t really eat our food. We are trying to talk over ‘what we want for Matthew’ and a very public place like Taco Bell somehow seemed like the right place for this intimidating conversation. I remember mustering the courage to look Rusty in the eye and almost inaudibly utter “I just don’t want us to be the only ones who love him. I need him to be loved.” I’m not dumb. I know how a lot of people see the special needs community. I know that they are intimidating and scary. I know that I was scared of these kids too. I wanted him to grow up, to get married, and to have his own family. I know now that this is unlikely. I’ve learned that children with his type of mobility issues often die in their teen years from complications that arise from being sedentary. Now I desperately want people to see the joy that he brings, the humor that he possesses, his compassion, his frustrations, his humanity.

This is what this blog is about. This is why he has a Facebook page. So that people can see him and love him for the awesome little man that he is. This is what God has done with his life. He has used us to help dissipate some of the fear surrounding the ‘different’ , to challenge people to see the beauty in his life, in all life, and to make sure that we are not the only ones who love him.

Are you waiting on God? I still believe that there are more great things to come both for Matthew and as a result of his little life. However, I am missing the message if I fail to see the amazing things that God has already done: the many times that he has spared Matthew’s life, the astounding support network that surrounds us, the joy and intimacy that our family has been gifted as a result of Matthew’s presence, and much more.  If you are in a waiting place, take a minute to look back on the path that you have traveled. I guarantee that you missed (or forgot) one or two of the amazing things that God has already done in your life. And be encouraged, because the best is yet to come!

For since the world began, no ear has heard and no eye has seen a God like you, who works for those who wait for him! – Isaiah 65:17

That is what the Scriptures mean when they say, “No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.” – 1 Corinthians 2:9

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The Rocking Chair

I’m in Matthew’s room, packing for a weekend trip. Erynn has been following me around the house chatting away with excitement about our weekend. But now she is quietly sitting in Matthew’s rocking chair and is quiet. 

And then she says, “I hope I get to rock a baby to sleep some day.”

I think I told her something simple like “maybe”, or “it’s a possibility”, or “hopefully”. 

But then I started thinking about it. Erynn is a carrier of OTC. Just like Ruth. Just like me. It’s entirely possible that she may not; that she has bitter sweet moments to rock her own OTC baby; or, that she has babies that aren’t carriers and are at no risk of devastating ammonia spikes. 

The science is there. Or, at least on the horizon. It sounds like something out of a science fiction movie and for many people, it’s a terrifying idea. But for me, it’s a giant bright, shiny beacon of hope. A hope that someday it will be possible and acceptable for doctors to remove the OTC gene and replace it with DNA that codes for a functioning urea cycle.

Is it playing God? Maybe. But I believe that God gave those scientist and doctors the knowledge and the skills to create these tools. I believe that God uses them to save a family from heartache and uncertainty.

I hope that some day both of my girls can fearlessly have children and spend the wee hours of the morning peacefully rocking their babies to sleep.

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After all…

I’m feeling a bit of rage coursing through me.

I’m afraid for the next person who says to me “I’m just a little concerned about his breathing.”. They may or may not end up with a broken nose.

Here’s the thing. I know you are concerned, but your statement implies that I am ignoring a serous problem; that I am not concerned.

Here’s what you should know. He was seen by 3 PICU doctors who did not offer any help or advice about this ‘breathing problem’ when he was hospitalized this summer. He was seen by his pediatrician, who was “concerned” and sent us to a pulmonologist. The pulmonologist was “concerned” but said it wasn’t her problem and sent us to an ENT. The ENT said there wasn’t a problem and put him on Nasonex. And then the problem continued to grow.

His nurse was “concerned”. The home-health nursing supervisor was “concerned” and curious about what we were ‘doing about it.’  The nurses that draw his weekly labs mentioned every single week that they were “concerned”. His three therapists were “concerned”

We tried to get back in to see the ENT earlier than planned and couldn’t. His geneticist tried to get us in earlier and couldn’t. His hematologist was “concerned” and wanted to admit us to the hospital so that we could get seen sooner. I didn’t want this so, we saw the pediatrician again, who was “Very Concerned” and sent us to the hospital, where he spent 4 days in the PICU. While there, he saw more ENTs and was scoped to get a clear picture of his sinuses and throat. He also saw several PICU doctors. They tried mixing helium and oxygen as well as various flow rates of oxygen. Nothing helped. The ENT once again said it wasn’t their problem. It’s neurological. The on call neuro agreed that we needed to have an MRI and see his neurologist.

Today we saw neurology. I’ll give you one chance to guess what she said.

Yep. She’s concerned about his breathing and wants to know when he’s going back to the ENT. She’s agreed to schedule an MRI but doesn’t think we’ll find anything helpful. After all, he does have a severe brain injury.

I mentioned his sudden loss of strength in his neck and legs. But… he does have a severe brain injury. Now, I’m no neurologist. Or doctor of any kind, for that matter. But, it just doesn’t seem right that an overnight loss of muscle control can be blamed on an old injury and that there is nothing to be done for him.

It’s a common problem when it comes to Matthew. Everything is “Well, he does have a brain injury.” or “We know what to do for kids with this problem who are older, but we have no idea what to do with a kid as young as Matthew.” (To which I would like to scream, “Then Google it!”)

Most people want to stop there, as if that excuse is enough. I won’t. I can’t.

I need a punching bag.

 

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Tornado Tango

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I left an appointment the other day, with my mind spinning with information, the doctor’s concerned, and the list of doctors that I needed to make an appointment with. It hit me. Our lives are like we are dancing with a tornado. There is a massive storm spinning on our horizon. Every once I a…
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Prayers and Reality

Me With You

Recently Erynn and Ruth have been having trouble sleeping. I’m pretty sure that it’s the manifestation of their anxiety after Matthew’s three weeks in the hospital this summer. We’ve been praying with them, but a couple of weeks ago, we switched from praying with them to getting them to try to voice their prayers on…
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The Unexpected

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Recently, the time came for Matthew’s physical therapy plan of care to be updated. We were very excited about this, because he has been making a lot of progress and showing interest in working hard. We just knew that the therapist would have her socks knocked off by his general awesomeness. Evaluation day came. We…
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Patience

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When we lived in Raleigh, I was part of a close-knit group of  amazing ladies. We have shared many laughs and tears together. Thankfully, when we moved to Virginia, those friendships were not left behind. They have inspired me and lifted my spirits countless times over the last several years. I love them and I…
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Birthdays

Matthew being happy

As many of you know, Matthew has two older sisters. Many people don’t  realize, however, how narrowly Matthew escaped sharing his birthday with one of them. Yesterday, May 28th, we celebrated big sister Ruth’s fourth birthday. Today we celebrate Matthew’s second birthday. For a moment, though, I would like to take a break from our…
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