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If a picture paints a thousand words: A mother's story


If a picture paints a thousand words, then looking at this picture of Jaime will tell you she knew how to enjoy life for her smile was always present.

I was an lpn for 10 ten years, I’ve been a wife for 28 years and a mother for 26 1/2 years.

I want to share with you my story of Jaime, who is still so much a part of our lives.

Jaime was born with a diagnosis of CP and hydrocephalus. However, by the time she turned 2, she became a medical mystery to us and to the medical profession. She had status seizures which were uncontrolled by medications. She suffered from numerous pneumonias, had a gastrostomy tube inserted when she was 5 and a trach tube at the age of 7 and shortly afterwards put on a cpap machine for about 18 hours/day.
During these 12 years of her life, Jaime watched movies, rarely slept, and only left home to go to hospital for one emergency after another. It became our second home. Yet Jaime always had a smile for you all day and all night. To us that smile kept you going at 3 a.m. when she would look at you to welcome you to join her party-time and you were suffering from sleep deprivation due to her needing to be turned, suctioned etc. Her tolerance for stimulation in those days was always low so we had to keep things fairly quiet for her.

At the age of 12, the seizures stopped, we withdrew many meds except for one and our life as a family began. Jaime went to school, mall shopping (she hoped to be a professional mall shopper), church and family holidays to Nashville, and Disneyworld.

Six years later however, Jaime had a 2 ½ hour seizure that started us back on the physical and emotional roller coaster of life. She required to be put on a respirator and had a port A catheter inserted. She became bed-ridden again and only left to go to hospital. The seizures were uncontrolled, and many other physical problems emerged. It was harder to take this time – this lifestyle – knowing how she had enjoyed being out and about – but she assured me with that smile of hers that just being with us was the most important thing we could do for her.

Jaime and I had such an intuitive lifestyle – I pretty much knew even before it happened when she was getting sick – even if I was away on holidays– I would ultimately call and ask how things were going and find out that she either had started to run a fever or she would seizure within the half hour of my calling home. I had always told Jaime that I would fight for her life as long as she would fight to stay with us.

I’m not sure when it was in the last year that I noticed Jaime’s smile was not as bright anymore and she was not bouncing back from episodes of illnesses. Maybe it was the daily episodes of short crying spells for a year, which would often turn into days of her not being able to communicate with us. Jaime spoke to us through her eyes, so when she withdrew during these episodes, it was up to us to try and find out what to do for her. However, there was more questions than answers coming to us.

Our nurses, many of whom had been with our family for 20 years met frequently to try and come up with answers to find ways to stabilize Jaime’s health. In a discussion over Jaime’s declining health – one of the nurses, who was a palliative care volunteer, mentioned a conference held here every year with multiple workshops concerning palliative care situations. I picked 2 of our nurses and my oldest daughter and I to attend last September's conference. We each chose the workshops that we felt applied to Jaime and came away with many solutions to try.

At the conference, I felt that I had finally landed on a planet where everyone was talking my language.

The down side to this knowledge was my knowing for sure now that Jaime had indeed stopped fighting for her life and was telling me I had to stop as well. I would define that day as the day I started to mourn her death!

I called the palliative care offices that week to find out if Jaime would qualify to become one of their clients. After our initial assessment, it was agreed to take on Jaime and forego the “death within 6 months” factor. – especially since the doctors had told us at birth that Jaime would only live for 6 months and she was now 23 ½ years old. All we had to go on that the end was near was my intuition that Jaime was too tired to go on.

It was almost like Jaime knew the end was coming – after meeting with the wonderful palliative care doctors and nurses at our home (not the hospital), it was eventually agreed upon to put Jaime on hydromorphon to control these episodes of pain where she would become non-communicative. Jaime became more relaxed and calmer with these necessary increased dosages. She let it be known that all she wanted was for you to sit and read to her or watch movies with her.

About 1½ weeks before she passed away, the respirator alarms went off at about 3 a.m. The night respite worker and I quickly checked the machines, and I realized that the problem wasn’t with the machines, it was with Jaime. I immediately called the palliative care nurse on call and we began to give Jaime increased meds to try and calm her down as she had also begun panicking at not being able to breathe sufficiently. It was hours of very intense and at times frightening moments to help Jaime be able to breathe again with the aid of her respirator.

Well, 5 hours later, Jaime was still with us but now heavily sedated. My sister and I met with members of the palliative care team later that day to discuss our options at this time.

We were given 3 options –

1) Keep her sedated and see if she bounced back in a few days.

2) Wait and see what happens next – yet if Jaime had another episode, it was unlikely that we would have everybody in place to help ease her discomfort as she passed away.

3) Do a controlled respirator withdrawal – wait to see if she further declined and if so, then pick a day to come and start an iv and give her medications to keep her comfortable and not panicky, then withdraw the respirator over a period time and let her slip away.

I held a family meeting that night and even though it was an intense and emotional time – it was decided in Jaime’s best interest to do the controlled respirator withdrawal and let her go.’

Jaime did decline more over the next few days and I called the palliative care team and asked to set up a date. It was set for the following Wednesday. The next few days were definitely bittersweet for all of us, knowing that our time with our princess was coming to an end – “for sure this time”. I tried and failed to not watch the time go by.

On the Wednesday morning, the nurse, Kelly and I got Jaime settled as quickly as we could as Jaime did not tolerate much movement by this time. Kelly picked one of her movies to put on and we watched it with her until the doctors came. Jaime listened to the movie with her eyes closed and gave us small smiles at her favorite parts. The smiles were making us wonder if we had made the right decision yet, my heart knew it was time to let go – Jaime had given us all she could and it was her time now.

We said our goodbyes to Jaime after the respirator was withdrawn and promised to not leave her side. It had been explained that she would probably only last an hour after the withdrawal. I think I was holding my breath at this point and only taking breaths when she was.
Well, hour after hour went by and, she was still with us. We realized that she was going to do things in her and God’s timing.

Family came and brought us food and drinks so we didn’t have to leave Jaime’s side as we had promised her.

This is so important for people to know and understand the need for families to stay with their loved ones.

Jaime was given scopolomine to help dry up her secrections that night. Simone gave us her pager number in case we needed her. Family brought in easy chairs and we took turns sitting with her and holding her hand and sleeping fitfully through the night as she hung in there.

The next morning members of the palliative care team came by and the physician ordered more meds. However, at 12:02 Jaime’s oxygen levels and heartrate dropped rapidly. She looked at us and sighed her last few breaths and left us at 12:04 that afternoon. I had promised Jaime not to cry until she had really gone and did not realize til later that I had bitten my lip holding back the tears til that moment.

After we had our time with Jaime, the members of the palliative care team came in and finished their reports and then came out and comforted all of us.

I was very relieved at this point that we didn’t have to deal with the pressures of a frantic emergency scene as we had already arranged with the coroner and the funeral home for Jaime to be picked up at home. The funeral home was called “only” once we felt ready to let her go. It was a weird feeling not to go with her and stay with her. You see, we had never left Jaime alone ever in all her 23 ¾ years. The next few days went by in a flurry of planning her memorial service and trying to come to the realization that she was no longer with us. And for me, reminding myself to still breathe.

The CNS from the palliative care program came by a week later to see how we were doing and if they could help in any way. She recommended the palliative care library at Deer Lodge hospital. Kelly and I found very helpful books there, so helpful in fact, that we went out and bought our own copies.

However, even with these books, I still felt a need for more support and understanding of the grieving processes. I tried a few suppport groups and found one called “griefshare” where we were taught that grief is now to be a lifetime resident. We did not have to “get over it” or work through it to get rid of it” and this relieved my mind immediately. I also subscribe to the griefshare web site for daily supportive emails.

In the first 6 months, I did come to realize that I must reconcile myself to the fact of Jaime being gone, however, since that time I have also come to the awful realization that Jaime is never coming back. It’s not that i have lost Jaime – because I know where her beautiful body is and where her spirit is – its more like I’m the one at times who is lost – I’ve lost my identity and now I have to find out who i am. Yet somehow, in the last 8 months of grieving, I have come to know what I have been blessed with in my life . I have 2 beautiful, happy, well-adjusted daughters, a husband whom I love dearly and even though Jaime is not physically present with us, she is definitely with us in spirit – still spreading her sunshine and cheering us on. This is just a new phase of life I’m in now for I still have a home to tend to and a family to care for, which is more than most people get to experience in a lifetime. Oh, I realize that I will still have days when I have to remind myself to breathe. But I also know that as long as I remain thankful, life will still hold precious moments and memories ahead.

I did have one initial question about whether or not we could have made Jaime’s death any easier for her – such as still provide her with oxygen at the end – however, I quickly realized that the oxygen would only have escaped out of her trach tube and mouth and nose and not gone into her lungs at all.

I know deep down that Jaime is happy now and even though I miss her dearly every day, nothing would ever make me wish her back to the life she endured at the end.

My heartfelt thanks goes out to the palliative care team who stood by and helped us through such a difficult time. You helped to make Jaime’s end of life full of comfort and enabled her to not only die peacefully but also with her family surrounding her in love.

I want to encourage these awesome people to be able to continue to reach out to the many others in need of their expertise and compassion.

Many years prior to Jaime passing away, yet in one of her many tentative hanging–onto-life moments, I wrote these words which were on the back of her memorial service bulletin.

How to help us live life without Jaime.

Allow us to grieve, but don’t let us fall into sorrow for that is where despair lives.

Allow us to cry and remember that you cannot “fix it”.

Allow us to feel all our emotions so that we may heal quicker.

Allow us to dream of Jaime, so we can have moments of feeling whole again.

Allow us to whisper her name til peace comes back to us.

Nurture us from our dormant state so we can grow and bloom again.

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