Brayden turned 5 on July 14th. Although involuntary breath holding spells are still part of our life, they aren't part of our daily life, as they used to be. These spells still come and go in waves, and we are in a more active pattern right now, however, even this active pattern isn't as bad as our worst days.
Prior to Christmas Eve 2014, Brayden was having one spell every 3 months. That light at the end of the proverbial tunnel was getting brighter and brighter for us. We relaxed around Brayden. It was as if, we were all able to "catch our breath". Beginning on Christmas Eve 2014, things started to pick up again. He had a spell on Christmas Eve, again in the beginning of January, and in mid February. March and April he had two spells each. May he had 3 spells within 2 weeks, and in June he had 5 spells. This month (July) he has had 4. Now, if you've been following this blog, or have just read through this entire blog, you know...this is nothing compared to what he's been through. I would still say that the condition has improved. I would include that this is without a doubt the most unpredictable condition I have ever known.
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| July 14, 2010: Brayden had his first severe spell |
Time Teaches. When I think back to September 11, 2011, and Brayden's first severe spell since his birth...the fear, the confusion, the what ifs that followed our conversation with the doctor and a trip to the ER, the mounting concerns and unanswered questions. I was a wreck. Each time a spell hit, I couldn't control every emotion that swept through me. I was outside myself watching this happen to my son, my heart. He stopped breathing, turned blue or pale, his body became so stiff and arched, it looked like he would break in two. Seizures overcame him and he would lose consciousness. To a parent watching this suffering of her child, it looks like death. Experiencing this several times a day, can break you. It broke me. I'm not ashamed to admit it. I was broken. And the pieces were so shattered and tiny, it was inconceivable that I could ever be put back together.
But time teaches. And what time taught me was that all the fear, and worry in the world, won't change anything, but it will drive you to make things better. Time taught me that no matter how many degrees the doctor had that told me I couldn't help my son, the one thing they didn't learn in med school was that the will of a mother is far superior than the knowledge of a doctor. Time also taught me to trust...in myself, my abilities as a mom, my capabilities as a person. For so long I doubted that the one gift I had, the unconditional, undying love of a mom for her child, was enough to help him through these terrifying episodes. What time taught me, and showed me, was that love is more powerful, more healing than any drug. I was there for Brayden, I comforted him during spells, I cuddled and loved him after the spells, I protected him from situations that were known to cause his spells. He trusts me, and he feels that love, and that feels great as a mom. Time taught me how to calm myself during these spells, so I could better comfort my son. It taught me that even in my weakest moments, I am strong. It taught me that crying behind closed doors, and in a hot shower were not signs of weakness, despite how weak it made me feel. It taught me that the one thing that can break you down to your very core, can also build you back up much stronger than you could ever imagine.
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| July 14, 2015: He's my hero! |
Time Can Do Many Things...Time Can NOT Heal All Wounds. Time can heal many wounds, but not all of them. Yes, I am calmer during spells. Yes, I feel more confident in my abilities to help my son. But there are many things that have changed in me because of this condition, that have not healed yet. I don't trust anything I can't control. For example, most literature on IBHS suggests that some kids "outgrow" this condition by age 4, most kids by age 8, and a small percentage will have these episodes into adulthood (which is later diagnosed as expiratory apnea). I can no longer let myself believe that Brayden will "outgrow" this. So many times, I felt we were at the end. The improvements were and still are monumental considering how bad it was, however, for each step forward, we take several steps back. This has been our pattern. I can't let myself believe he will "outgrow" it, because, I can't take the hurt and disappointment when each set back proves to me that what I think I know, I know nothing about.
Time can't stop a mother from worrying. Every mother worries about her children...its just how things work. But the worry you have for your child when you feel that you are their protective bubble, and the consequences of you not being 10 steps ahead could lead to your child having a seizure and losing consciousness, is far different than the worries that you have for your healthier children. When my 12 year old son leaves the house to walk to a friends house, I worry about all the horrible things that could happen in that short walk, but I don't feel the need to hover over him when he's at home. With Brayden, the fear isn't just there if he's not with me. It's there if he's not in my direct line of sight, even when we are at home. I worry about the dangers of him climbing up the stairs backwards, as he likes to do. I worry when he decides to be a daredevil and wants to jump off the 5th step. I worry about him on the trampoline with his brothers, I worry about going on vacation and what the change in environment and routine might do, I worry about him not getting enough sleep, or when he loses his appetite, I worry, and worry, and worry. Will all these worries change anything...improve anything...no...time taught me that. But those worries have been instilled in me since day one, of this journey, and may never change. However, I have learned to not let them hold Brayden back from being the little boy he is, and enjoying himself. He jumps on the trampoline, and off the steps...walks up the steps backwards, climbs anything he can, and is the biggest daredevil. I don't mind the suffering of worry (and gray hairs) if it means he's living his life. I also, feel that this is a sign that this condition, has not scarred him in ways it could have, and I'm thankful for that.
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| Me & my buddy! Working to raise awareness and help support families caring for children with IBHS. "Strength In Every Breath" |
In Conclusion. Life can be difficult. It throws curve balls. The unexpected can happen to anyone. No one is excluded from these things. All you can do is learn from it, change with it, be kind to yourself when you are faced with something far beyond what you could have imagined. Allow yourself to "have a moment" without beating yourself up over it. You will adjust, and you will move forward. Set backs are inevitable, but so is progress. Find support from those in a similar situation, because only they can truly "imagine" what you are going through. Don't let the comments and judgments of others become part of your beliefs, they know nothing about the battle you are fighting everyday. Don't expect anyone to understand what it's like to walk in your shoes, its unfair to them. Don't isolate yourself, if you build too many walls, you will lose the people who can bring you out of those dark moments. Finally, hope and faith are funny things. They are the strongest tools to have, but so hard to keep sometimes. Make sure you have people around who can help you in those moments when you feel hope & faith slipping away. People who are going through a similar situation and have found a way to keep hope & faith above everything else and are willing to be there for you are the best friends you can find. Do they have to live close...absolutely not!! The people who have been there for me in my darkest moments and have lifted me up are scattered around the country and the world!! "Present" doesn't necessarily mean close, its the people who have proven that they can be there for you in ways much more powerful than physical presence. Those people are true gifts!
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