Saturday, May 25, 2013


I should first say that I intended to post this on the 22nd, for "ask my about 22q" day. But I had a hard time finishing, and kept having to come back. Tonight I was able to finish this post, and with the permission of all people mentioned, I'm sharing something very near and dear to my heart.


Last September Roman had a procedure to repair his sub mucous cleft. It was causing many issues, like aspiration and air escaping through his nose when he would talk, so we were excited to have this finally done. During the surgery the Surgeon decided to also to take out the old set of ear tubes, clean out his teeny tiny canals, and put new tubes in. She informed us, however, that when she went into the ear to do this that she found a large mass behind the drum. She suspected it was a toma, and it had developed from the numerous ear surgeries he had already had. We became even more worried when she said how close it was to the nerve that controls that side of his facial movements, and also that it was weaving between the bones of the inner ear, which removal could cause significant damage and hearing loss.

Roman healed up from his procedure and soon we were facing another one. We first had a CT scan to confirm what exactly it was, and wasn't-  like a tumor, thank God. But it was in fact there, it was large, it needed to come out and it was going to take a very delicate hand to do so. We were grateful that this was found "by accident." Had she not decided to go ahead and put in new tubes, who knows how long till it would've been found. Maybe by then it would've been too late. Our doctor convinced me that it was ok to try to get through the winter's cold season and then schedule the surgery.

That February started a pretty hefty round of doctor appointments for Roman. Follow ups, scans, clearance and so on, to get this show on the road. As we would come and go at our local Children's Hospital, we would try to meet with a friend of ours, Marti, who, unfortunately, was experiencing some extended stays in the same hospital with her son, Lake. Both our boys had a condition called 22q11.2 deletion. While the effects of it on our boys were very different, the kids themselves had a lot of similarities. When I first moved to Georgia and started a face book support group, she was one of the first persons to reach out to me. We instantly hit it off when we found out we were both from Northern Ohio! What are the odds? Soon we met for coffee and had a several hour long talk, and that followed with face book messaging, and then texts. What started as talking about our children's conditions soon turned into conversations about faith, family, God, the "why's" and "why me's" and lots of back and forth encouragement. Me and Roman were able to met up with them after Romans pre-op appt. We walked around the hospital, we prayed for her marriage, for he strength, for her son. Even in the midst of some uncertain and scary times, she encouraged me and spoke life over my situation.

A couple weeks later it was time for Roman's procedure. I was told the plan was to make and incision in the ear drum and then make a skin graft to patch it OR make an incision behind the actual ear and work from there. Both had their risks, and both required a 48 hour stay in the hospital afterwards. As a way to comfort us the surgeon let us know there would be a sensor placed on the nerve that controls facial paralysis, and every time they would come near it an alarm would sound. However, this really did not make me feel better.  She let us know there was a chance of non-permanent facial paralysis that would eventually come back after some therapy. I was starting to slightly panic. She ensured me that she was going to take her time as she unwound the mass around his tiny bones in his ear. We were nervous, but had faith everything was going to be ok. We had prayed that the surgery would go smoothly, that the spirit of the Lord would fill the room, and his hands guide the surgeons. We believed in complete healing through the work of this surgery. We believed we had already received a miracle by the Doctor "mistakenly" finding this mass. They took him back, me and my husband held hands... this was now the 5th time we had handed over our oldest, littlest boy into the hands of mere human beings, practicing medicine, behind closed double doors, without us there.

Upstairs there was another Husband and wife hold tightly to each other. There son was in the cardiac intensive care unit, as doctors scratched their heads about what to do next. From room to room in the Children's Hospital I picture many families locking hands and waiting for their miracle. Some maybe not even sure what to believe, or who to believe in, but I can tell you this, when your child is sick, and you are facing the scariest of situations, you will want to believe in something. I think of the angels among us, walking halls, and standing over babies. Administering protection and sometimes taking children home...

45 minutes later my Husband and I were sitting in the waiting room, poking around at our food, making that small talk we were getting used to making. I thought about Marti, I thought about the other little girl in the support group who was also having a procedure done that day. I tried not to think about a knife on my child's skin. I tried not to think about the risks. I tried not to think about all the Ct scans he would need in the future to make sure the mass doesn't return. Just poking at my food, talking about what a nice day it was....

The front desk notified me that the surgeon was coming out to speak with us. I wasnt sure why, but I thought maybe she was there to tell me which way she decided to operate prior to actually doing it. I watched her come through the double doors, pull her face mask down, her eyes big saucers, throw her hands in the air and LOUDLY exclaiming "TOMA? WHAT TOMA?!"

I think both our mouths hit the floor. I didn't understand. I asked her what she meant, and she just kept rambling about how the body doesn't heal itself of these things, and that, and I quote "ya'll must be livin' right, cause this just does not happen." We didn't say anything. We were just stunned. She said he was coming out soon, she just put some T-tubes in, and he can go home shortly. We were there but a couple hours. I just couldn't believe it. We both acted like we didn't know what to do. We had made so many arrangements for work and babysitting and over night stays but now we were going home!

I hurried back to the post op room and waited for him to roll on in. I sat there, in disbelief just thinking to myself "why?" Yup, "Why?" You see, I had prayed for things to go smoothly, I had prayed for him to heal quickly, what I hadn't prayed for was a miraculous healing, but in spite of me, and how small I sometimes make my God, that is what he decided he was going to do. Of course my heart desired such a thing, but my flesh was just happy to get what I could get.

If I could continue to be even more candid- I think sometimes when you are in a position like us special needs moms, you begin to adapt a mentality of only having so many "miracles"-if you will. When you are faced with the BIG STUFF, that's when you pull out the BIG PRAYERS, THE BIG REQUESTS. But when things seem like you can somehow manage with the outcome, you are more selective with your requests. Maybe you are reading this and you really don't get it. I don't know how else to explain. We had seen God perform some miraculous things, just recently through the birth of our daughter Sophia, and you better believe we were pounding on heavens doors every minute, of every day in the midst of that situation. I guess we forget sometimes that with God, nothings too small or too insignificant to ask for. You might wonder why I would even look at this situation with Roman as "insignificant" but remember, I have a dear friend who's sons life is hanging in the balance just floors above me. Living in situations like these can sometimes blur your idea of what's important to God.

The nurses came in with my sweet boy. The first nurse told me that she just couldn't believe her eyes. That she was in the operating room when the toma was first found. And that they were looking into the ear and then back to CT scan results over and over, in awe. The second nurse said it was "truly a miracle" and started sharing some other testimonies of healing she had witnessed in the past. But that she had never seen a toma remove itself. Soon we went home. Soon we were sitting on the couch, watching TV together, him sleepy due to anesthia, me misty eyed as I kept glancing at our packed bags in the corner.

A week and a half had past. My husband was having a difficult time healing from a procedure he had later in the same week as Roman. He had an abdominal hernia repaired. A couple days later I had to call 911 as he thought maybe he was having a heart attack. Soon we found out he had developed blood clots and they had made it to his lungs. Following a few more days in the hospital he was sent home on more medication, including blood thinners. A couple days after being home he had to be rushed back to the hospital because his liver was shutting down due to the blood thinners. He was again in the hospital for a week. He was finally able to go home on mine and Romans birthday. And is currently doing much better.

Remember the little girl I mentioned who was also having a procedure done the same day as Roman? She too has 22q11.2 deletion, just like Lake and Roman. Her mother had to leave the O.R. with uncertainty as her daughters ear surgery didn't go as well as hoped. Her daughter recently received a hearing aid and hope is now restored.
Its now been a couple weeks since I was sitting on the living room floor folding laundry. I was thinking about Marti and her husband, thinking about Lake, praying for them as I went through the clothes. I was wondering what I could do to cheer there spirits. To make Lake feel special. We belong to a special community of families who rally around each other when we are faced with tough times with our kiddos. So I thought to make a card drive for Lake. I text Marti to check in, and to see if this would be ok.

Everything was set up, and in true fashion, this beautiful community willing joined in. Lake was gearing up for another heart procedure. He had already received a pace maker to regulate his heart rhythm. It hadn't been working as they had hoped for and now they were going to try to something different.
I text Marti to see how he was doing.

Lake passed away soon after that procedure. His family was able to be around his bed, able to say goodbye.

I am having trouble right now just typing and trying to form words. As a mother of a child who had the same genetic disorder, I felt fear that I cant quite form into words. As just one mother to another I felt a tremendous burden to intercede on her behalf. As a believer, I questioned God and His ways. As a friend I felt utterly helpless.

A few days later a few of us from the support group gathered at Lakes viewing. My heart ached in a way that I have never felt before. I couldn't help but think of the weeks prior. The prayers that had been prayed. The things that had been questioned. Why God made moves the way he did. Why healing doesn't always come as we had prayed.

But knowing that it does always come.

He is the author and the finisher. I don't understand why he does what he does. Its clear His ways are higher than my ways. I know that healing can manifest in a multitude of ways. Through the use of a surgeons hands, through the work of a device, after a period of touch and go, and yes, even through death.

I'm not sure how to end this post. My heart is still very heavy.  I rejoice there is a child who HAS BEEN HEALED, who has been made new, with a perfect body, inside it- a PERFECT heart, running through the streets of heaven, and resting in the arms of Jesus. My heart hurts that a family is left behind picking up the pieces.

Why God choses to heal the way he does...
Why he allows the pain that he does...
Why in this life are their families who struggle, suffer and worry... daily...

I don't know. I guess I will have to ask him when I get there.

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