A Home For Joshua and His Family

Hello. My name is Christine Brennan.  I am 37 years old and a resident of Long Beach, California.  I am a single mother of four wonderful children.  Thirteen years ago, I was blessed with healthy identical twin boys.  Most people’s idea of a dream come true, but this dream come true quickly became any parents worst nightmare… my worst nightmare.

My beautiful boys were born March 29, 2001, just three weeks before my due date, which is common for twin pregnancies.  They were beautiful and perfect in every way.  I named them Joshua and Jacob.  Tragically, Joshua stopped breathing on April 25, 2001 when he was only three weeks old.   Although he was sleeping on his back, the doctors determined it was SIDS related.  There was no way to determine how long Joshua went without oxygen, and therefore what, if any, permanent damage might have been done.

Joshua was immediately hospitalized and intubated upon arrival. This means that they put a breathing tube down his throat and into his lungs that was attached to a machine called a ventilator that would breathe for him.  The doctors insisted Joshua needed a tracheostomy, which is an artificial airway, in order to come off of the breathing machine. The doctors re-explained they were unable to determine the extent of any temporary or permanent damage that might have been sustained, the tracheostomy was needed to prevent against possible apnea or aspirating saliva into the lungs which would cause pneumonia or even death.  My instincts told me no, but I was young and naive, and I signed the consent for the surgery.  Joshua also received a gastrostomy tube which is a tube that is placed into his stomach to feed him through.  Through all of this, I realized I had to be strong because my son needed me and although I wanted to crumble, I instead chose to put my faith in my higher power, God, and I continuously spoke life to my sweet baby boy.  I never gave up on him or the hope that he, (we), would pull through this horrendous nightmare.  I was always by his side, everyday.

Joshua was in the hospital for around six months.  He was showing positive signs of recovery and healing.  His hand/arm and foot/ankle splints, (braces), were discontinued because he no longer needed them.  He was reaching for his crib mobile and other objects and he was extremely alert and aware of his surroundings.  The speech pathologist of the hospital came to me and suggested Joshua undergo a swallow study in order to determine his ability to swallow safely.  The results of this swallow study would determine if the tracheostomy would still be medically necessary. You see, when there has been a lack of oxygen to the brain, it can affect how the brain functions, and sometimes reflexes are negatively affected to the point that they are weak, or in extreme cases, no longer present.  The swallow study results indicated that Joshua was still able to swallow safely.  This was very encouraging! It was determined that Joshua was a good candidate for having his tracheostomy, (the artificial airway), removed so he would breathe normally.  The speech pathologist then asked me if I wanted to have the hospital wean him off of his tracheostomy, or if I wanted to take him home to do it myself.  I will forever regret my decision.  I chose to have the hospital do the weaning because it just seemed safer to me.  I felt they were better equipped with knowledge, experience, and equipment to safely wean my child from his tracheostomy.  I thought Joshua would be safe and I thought our nightmare was finally coming to an end.   I was wrong.

On September 13, 2001, just two days after our nations devastating attack on the Twin Towers, the unthinkable happened.  Joshua stopped breathing again.  The hospital called me and told me there had been an incident with Joshua and that I needed to return, but that I shouldn’t worry, that he was fine.  I really didn’t know what to think.  I rushed there and was horrified by what I saw when I arrived.  Joshua was in a comatose like state and was experiencing intermittent seizure activity which had him violently shaking his arms and legs sporadically.  He was transported to CHOC in Orange County where he was “stabilized”.  Joshua at this point now required 24 hour oxygen, a ventilator at night, and he was on approximately 10 medications.  The progress and healing that we had worked so hard to achieve was now lost, permanently.  I was in a state of shock and denial.  I was angry at God, the hospital, and the world.  All I was able to do for a long time was cry.  I finally took my son home and just resumed my decision to be strong for Joshua and his identical twin Jacob, who was still very much needing me too.  I was a literal mess, but I knew I had to work very hard with Joshua and that my boys needed me to be very strong. 

Over the course of the following year, I worked tirelessly.  I was able to wean Joshua off oxygen day and night.  He also got strong enough that he no longer needed the ventilator at all.  I weaned him off of every single medication as well with the help of his doctors.  I kept talking to him and finding resources for him that provided early intervention services such as Regional Center and California Children’s Services to help him with his very special developmental needs.  Joshua also qualified for home health nursing services.  Surprisingly, many of the nurses that had come to potentially work with Joshua over the years lacked much of the experience and procedural knowledge that you would assume all nurses have.  As a result, I ended up training several nurses on numerous skilled nursing procedures.  After several years of doing this, I realized I should return to school for my nursing license.  It was apparent that my own son had been training me to be a nurse for 13 years.  Training I wish I didn’t have.  But the fact of the matter was that this training could and would help me provide a better life for all of my children.  I graduated in 2012 with honors with my LVN.  I am currently working on my RN. 

Through all of the painful trials that can be experienced in life, I feel like this has definitely been one of the hardest.  The only trial that would be harder is what Joshua has to live on a daily basis.  Not being able to move, not being able to communicate, not being able to enjoy free will in a body that works, but instead being trapped in one that doesn’t.  It is so hard for me to see him like this, but I talk to him and treat him just like I do my other kids, (with lots of extra TLC of course), and I expect his brothers and his sister to do the same.  Joshua loves going on family outings, ex: movies, park, Disneyland, etc.  Joshua was also provided a computer through his school district that he is learning to control with his eyes.  He is truly remarkable.  I continue to work hard to include him in everything and I try to normalize some of the negative effects that unfortunately often come with disability.   It is said that one’s true character is defined by trials and tests and by actions and attitude.  Nothing could have prepared me for what we have experienced.

Currently I am trying to work on providing my children with our own home.  We pay very high rent and it should be a mortgage payment.  Unfortunately though, it is so difficult for me to save for the down payment with the many financial demands that come with raising children.  Being a single parent only further complicates saving money.  Thats why I have decided to reach out to all of you. Would you please search your heart for a small donation that my children and I can use for a home?  I am so thankful for all of you and any size donation you might be able to afford. I want to say thank you for taking the time to read our story and I pray you are blessed.  Thank you so much for your thoughtful and generous consideration.

Sincerely,

Christine Brennan