Friday, May 3, 2013


Today is Trenton's 1st birthday! We have looked forward to this day the whole year Our doctors told us that Trenton would be most at risk his first year, and statistics say the early years are the hardest for CHARGE syndrome. Thankfully, he has only had one serious cold and one mild one this year. Thankfully, he has not gotten aspiration pneumonia necessitating hospital visits. There is so much to be thankful for. Trenton has begun to show his personality more and more. He is a sweet boy with a determination that combined with strength from the Lord, will help him succeed in life.

As his birthday has arrived, it is different than with our first son. Our life is different, and it is something I just would like to share because I know there are so many others who have probably gone through the same thing. Whether you have cancer, special needs of your own, or a child with special needs, birthdays are different. In many ways they are a happy time because you have made it to another birthday, but to be honest it is bittersweet at times. It is likely some wrong thinking, but because we all have a sin nature, I know that I am probably not the only one who has struggled with these feelings.

This morning, we woke up and Trenton seemed pretty happy. A few minutes later he was gagging for no apparent reason. If we don't stop him, he will likely spit up, and with his problems, spit up is more than spit up. It is a risk of aspriration and pneumonia. This has been a daily thing lately. I'm not complaining, but it plays a role in helping people understand the day of someone with a special needs child. There are moments of wonder at accomplishment, and the next moment, could be a moment of dread or fear.

Thankfully, we have had several weeks at a time that were not filled with these feelings. We have been able to relax many days since Trenton was born. It is hard to explain when issues come up with Trenton. A cold or pneumonia is one of the worst things that can happen with him, but it is often the day to day issues that can wear on a person.

As Trenton's birthday approached, I was thankful. Thankful to have this year behind us, and looking forward to getting passed the next several. I look forward to the days when we may know the mysteries of his illness, when we can communicate with him by mouth or through signs, when perhaps he will eat by mouth or at least is adjusted and old enough to understand what is going on with tube feeding. I feel bad that I look forward to these days. I try to enjoy the small and major steps forward that he makes. I look forward to the new therapist that we will have coming soon, and I am hopeful that Trenton will make great strides. Afterall, God did save his life for a purpose. We know that to be true.

We know that all things work for the growth of those who trust in Christ (Romans 8:28). Although I often have struggled to think positively about our situation, I do know that God is in control. This may be a strangely, discouraging sounding post for someone whose son is having his 1st birthday, but I'm sharing because I know that there are others out there who have children with issues like my son's or much worse. I know there are those who have cancer or are affected by a debilitating disease, and birthdays are a blessing, but they are a blessing that can so easily turn bittersweet in our thinking.

I hope that this helps those going through difficult birthdays to realize that they are not alone, and I hope it helps those not in a situation to understand how those who are going through these times might be feeling on their special day. I hope that this will help all of us know how to pray for each other in a better way as well. So thankful that I am not doing this alone. I have a best friend in heaven (Christ) and a best friend on earth (Ryan), and they are both there to take this road with me.

1 comment:

  1. I agree wholeheartedly. When my son has a birthday it is such a mix of emotions. So thrilled at another year, so excited about his accomplishments, and so aware of what other 5 year old boys enjoy that he doesn't. It really is overwhelming.

    Jesus knew that he would raise Lazarus and yet he wept. Angie Smith says (in her book "I Will Carry You") that she believes he wept because his friends couldn't see what he could and he realized their pain.

    Even though my brain sees that Liam is such a gift and my eyes of faith KNOW that my God is in control and he loves Liam and has a plan for Liam, my human mother's heart just wants my 5 year old to be a healthy, typical 5 year old. And I imagine that while I will love him and know all of these things with my brain and my eyes of faith, every birthday and milestone will bring mixed emotions for the rest of his life. And I think that is okay. In between those moments, I pray fervently that the Holy Spirit will strengthen my faith so that I will keep perspective even when my human mother's heart would prefer a plan that is different.

    Thank you so much for your honesty. I can truly relate and am praying for you.