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It was 5:30 at night and I stood in the shower letting the hot water soothe away the stress.
Ah… the quiet.
I finished and stepped out and immediately I was bombarded by the sound of my son dumping huge masses of toys all over the place, my husband talking loudly on the phone, and my two month old screaming.
I stood there for a minute. Never in my 27 years did I ever imagine that I would be where I am today. What is today? Today is my birthday. Today, I spent my time cleaning up after my special needs toddler, dealt with two therapists in my house for four hours, made sure my newborn was happy, fed right, and I meticulously logged all her feedings.
While I had always imagined and hoped that I would be a mom and a wife I never realized how difficult that road would be and how different from anything I had ever imagined.
I’m mom to a son with Autism, SPD, Apraxia, and a feeding disorder. You would think that’s more than enough for one family to handle. But God has other plans.
Yesterday we found out that my ten week old daughter is having swallowing difficulties. In turn, this is causing her to choke, gag, and aspirate when we feed her. Fluid is filling her lungs and they told us we are very lucky we caught it before it turned into pneumonia or RSV.
She also is having trouble with reflux which was one of the main reasons in the first place that the doctor ordered the tests done. She has been projectile vomiting her bottles up and the first medicine and formula change didn’t work.
She’s only two months old and already on the line of “failure to thrive” due to spitting up her food so much. Her reflux also comes back up an hour or two after eating and then she is choking and aspirating on that. It’s a crazy mess and a crazy cycle.
After the first test at the children’s hospital we were told that we needed to add rice cereal to her bottle, and feed her in a certain way so that she is not choking and aspirating.
They referred us to see pulmonary specialist to check her lungs since she had fluid in them, and for her breathing stridor. They also referred us to see a feeding therapist and an occupational therapist to learn how to properly feed her and to help with everything.
We have a second test we have to get for her on Monday – an upper GI to see how bad her reflux is. Depending on the results of this test she will most likely need to see a GI specialist as well.
They are saying that this may be something she will grow out of, or it may be something we will be dealing with for a long time with therapy depending on how it affects her eating in the future. We have to get her re-tested again in three months with a barium swallow test and then go from there.
Meanwhile, I am already dealing with my son’s 15 hours of therapy a week. Now we will be adding on two specialists and two more therapies for my daughter. I’m not sure what the second test on Monday will bring, but I am not sure how much more I can handle.
I try to think back to easier days… days before visits to multiple doctors and specialist, days before hours of therapy and talks of special needs filled my day. I can’t really remember much about those days.
I’m not sure why God chose me to mother two special needs children. There is nothing special or extra ordinary about me. I’m just a mom who wants what’s best for her kids and hopes that one day she will not have to watch her children struggle so hard.
We are told to trust God, to know that He wants what’s best. That He is kind and loving.
I’m not sure what God’s plans are but right now I am taking it one day at a time. I am trusting God that He has an amazing plan for my kids. That someday, I will look back and know it was not for nothing. I will think what a wonderful and amazing plan God had and be happy that I learned to trust.