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 Bryan 9/06

Written 1/97

I had considered becoming a foster parent for quite sometime, but doubted whether any agency would consider me because I was single and used a wheelchair due to a disability of Cerebral Palsy. Once I put my doubt aside, I learned through numerous phone calls that my disability or marital status was not an issue with agencies as to whether or not I would be considered a good foster parent candidate. Not long after I made those initial phone calls, I found myself enrolled in the training necessary to become a foster parent.
Three months after I completed the training, I received a phone call from the foster care agency.
“We have a 16 month old medically fragile boy named Bryan. He had a stroke inutero is hydrocephalic (“water on the brain”), diabetic, malnourished, a failure to thrive, profoundly retarded...”
The list of medical conditions seemed endless. Then the question came,
“Are you interested?”
“Yes, very much so,” I responded without hesitation.
In that phone call, I also learned that some professionals involved with Bryan doubted my ability to care for Bryan due to my own physical limitations. I had no doubt, nor did the foster care agency, which was obvious by the fact that they had called me about Bryan.
It seemed all I could think about after the agency called was that there was a little boy lying in a hospital who was in great need of love and nurturing. I wanted to visit Bryan right then, but was unable to do so due to circumstances beyond my control. The following day, however, a friend and I went to the hospital to meet Bryan. I received an incredibly warm greeting from the hospital staff, a very comforting event after knowing about the doubt regarding my ability to care for Bryan. While walking down the hall to Bryan’s room, one staff member commented to me that they wondered how I would manage with Bryan, but then with a smile on her face and a hand on my arm, she said,
“But then we decided it didn’t matter because you would be holding him and loving him all the time!”
When we arrived in Bryan’s room, his nurse for the day, Marty was preparing to get Bryan out of his crib and said to him with joy in her voice,
“Look Bryan! Your new Mommie is here!”
The words sounded funny to me -- me being considered someone’s “Mommie” --
something until that point had only been a far off dream. The words were comforting just the same, and as I thought about them, in my mind I said to myself with great excitement, “This is for real, I really am going to become a foster parent!”
Marty then placed Bryan in my arms and as I looked down upon him, touching his face and holding his hand, I was especially moved by Bryan’s big, beautiful brown eyes. Bryan had little control of his eye muscles, one tended to “wonder,” and it was obviously difficult for him to focus since he also had many random eye movements. I was told before meeting Bryan that there was doubt as to whether or not he was able to see -- nonetheless, his eyes were indeed an outstanding feature. At any rate, as soon as I held Bryan, I knew that God meant for me to take Bryan home and love him.
Talking with Marty I learned that Bryan was born premature and had spent the first four months of his life in the hospital. At that point, Bryan’s mother placed him in a long term care facility, because although she loved him, she did not feel she could adequately care for him. Seven months later, Bryan’s mother decided to take him home, and following numerous hospitalizations while in her care, it was determined that it was necessary for Bryan to be placed in foster care.
My friend and I spent a couple of hours at the hospital that day with Bryan. Our conversation focused on Bryan, and the belief that she and I shared that every child is precious; created on purpose, with a purpose. True, Bryan was very developmentally and physically delayed (he weighed just 17 pounds, and could scarcely do more than move his head from side to side), but there was no doubt in either of our minds that Bryan was aware of what was going on around him -- not what we considered a profoundly retarded child! My friend and I also doubted what the professionals believed about Bryan’s visual abilities. In addition to our conversation, my friend and I said our own silent prayer for
Bryan as we looked upon him, and told him that Jesus loved him and what a special little boy he was.
The time for my friend and I to leave the hospital came much too soon, but I did so basking in the joy and knowledge that God had truly blessed me and given me the desire of my heart. When I became involved with the foster care agency, I was told they did not get babies, and although I could accept that based on my belief that every child needs a home, I wanted a baby more than anything -- and here I was being given an infant foster child for whom I was to care!
The following day I spent much time at the hospital getting to know Bryan and learning to care for him. Bryan was given a majority of his food through a “g” tube, a tube placed surgically that went directly to his stomach, since the muscles required to suck and swallow were not developed in Bryan which made taking a bottle was an incredibly difficult and slow process for him. Because of this, Bryan received continuous feedings overnight through his “g” tube with the use of a feeding pump (similar to an IV pump), to assure that Bryan received the number of calories he needed to gain weight. In addition, it was necessary for me to learn to give injections twice a day since Bryan had a form of diabetes. Although there was a lot to learn due to Bryan’s many medical complications, I was eager to learn and never found myself feeling overwhelmed by any of it -- maybe because my focus was not on Bryan’s condition, but on his need to be loved and cared for as any other child.
Only four days had passed between the time I received the initial phone call about Bryan and the time he came home with me for the first time. The first week or so I wondered if I was going to survive since Bryan’s schedule made it seem like having a newborn in the house. Thankfully, God is faithful in providing His strength, especially in times when we are weak, so as time passed, I was able to adjust to life with Bryan and did not feel exhausted and overwhelmed all the time.
Bryan’s medical condition meant that nothing was simple with him. Bryan’s daytime feedings were not only time consuming, but also often discouraging as reflux (vomiting) was common for Bryan. In fact, sometimes he would lose everything that he had taken while eating. Bryan had to be watched carefully since he did not have the muscle control to get things out of his mouth. Assisting Bryan with getting things out of his mouth was done by quickly leaning him forward or placing him on his side. The most important thing at such times was to keep Bryan from swallowing any formula that came up, for if he were to do so, there was great risk of the fluid getting into his lungs and causing more serious problems, such as pneumonia.
Outside appointments for physical and occupational therapy, and home visits by a speech therapist (with the focus on activities which would increase strength in the muscles involved in sucking and swallowing) were also a part of Bryan’s schedule. Going out with Bryan was far from simple, although both of us enjoyed it, because since I did not have a car we had to depend on public transportation. That meant an uncertainty as to whether or not we would get places on time, and the necessity for me to carry Bryan and his car seat on my lap while maneuvering my wheelchair. Not an easy task I assure you! Had I had a car of my own, life would have been a bit simpler because I would have been able to leave the car seat in the car, thus decreasing the amount of weight with which I had to deal.
All struggles and frustrations aside, time contributed to Bryan progressing beyond any expectation. Physically, Bryan began growing (he gained 2.5 pounds in his first week with me), and with a lot of patience and hard work on both of our parts, Bryan began to take more food by bottle in a shorter period of time. Initially, it took Bryan at least 30 minutes to take one ounce of his bottle, and on a good day, he would take a total of four ounces by bottle. After about four weeks, Bryan proved he could drink two ounces in 30 minutes or less, and averaged between six and eight ounces total daily by bottle. Regardless of what Bryan took by bottle during the day, his overnight continuous feedings were always a part of his schedule, although the amount he received was adjusted according to his daily bottle intake.
Bryan’s progress was not limited to physical and weight gain. Before much time had passed, Bryan’s random eye movements significantly decreased and it appeared easier for him to focus on things. Although I know Bryan did not have “normal” vision, I was convinced that he could see more than shadows and light and dark as the professionals had said at first. Even though Bryan’s vision was not tested at any time while he was in my care, in time, the professionals began saying that I may be right, Byran did appear to see more than it was thought in the beginning. Along with those changes, Bryan began responding to his environment more and more -- even to the point where it was not uncommon for him to smile and coo, something I was told Bryan would not do!
Three weeks after Bryan came home, he was hospitalized with complications from his diabetes. Bryan was in the hospital for four days then, but as the weeks passed, Bryan’s health continued to deteriorate, and his hospitalizations became more frequent and longer in duration. Nearly three months after Bryan first came to live with me, it was determined with great difficulty on the part of everyone involved, that based on his medical condition, Bryan needed to return to a long term care facility.
The day I said goodbye to Bryan was as memorable, though not as pleasant, as the day I met him. When I entered his hospital room, Bryan was asleep; however I immediately took him out of his crib to hold him. Much to my surprise, Bryan did not make a sound when I moved him as he had always done previously. Instead, he snuggled close as soon as he settled in my arms. Bryan then opened his eyes long enough to look at me, and instantly went back to sleep.
It would be dishonest if I were to say I never questioned why Bryan was allowed to suffer as he did, but I continually remind myself that inspite of his medical complications and limitations, Bryan was created on purpose, with a purpose. I know in the time Bryan and I were together, he touched many lives and will continue to do so for as long as he is on this earth. As for now, I hold fond memories of Bryan in my heart and I thank God for blessing me with the opportunity to care for him. Along with that, I wait for the day when Bryan and I will meet in Heaven where he will be made whole and free of all of his limitations. On that day I know, Bryan will come running to me, and I will hear him say the words I saw in his eyes and smiles so many times, “I love you, and thank you for taking care of me!”

 Bryan 10/06

 

 Sure, he'll never smile!

 

Thank you for taking the time to read this!

Please keep watching for more on Bryan's story!

 

Tears On the Keyboard

 

Letters turned to messages

 In years gone by, many people had boxes of letters written by loved ones that they had saved for years. I was one of those people – until I moved a million times (it seemed) and the boxes got lost or thrown away in the shuffle. Now, as I sit at my computer I’m going through my email inbox. Messages I thought I’d get back to, I never did (thankfully, they were mostly junk and not from people I knew). So many messages I’d forgotten where even sent – forwards I really enjoyed and thought I’d save for later. But then came those others – the emails that if they’d been “snail mail” would have been saved in a box for years to come – those which now seem to be a permanent part of my inbox. There were messages from friends sent when my daughter was born (she’s just four years old) – how I wish I could go back in time. There were messages from friends I thought would always be there – that I know haven’t heard from in years…yes, years. 

Then, there were the hardest of all – messages from one who is in Heaven now. Those were the toughest of all I think. The love, encouragement, and sometimes just a lot of “life.”--whatever it was those many messages contained, I so treasure them now as I know I’ll never read new words from her again. Even the messages that really weren’t important – I just can’t delete them.

 

Not a great blog, but words nonetheless

 

Birthdays. I really don't like them. For me, they are a reminder of what's been lost. Not youth, but something much deeper. I was born with an identical twin. She's in a Heaven now. The world never knew her; she lived just over eight hrs. Some could say I didn't even know her. But there's this bond. I don't understand it nor can I explain it, I just know it's there. I'm left to live with emptiness inside. It never goes away. No matter how old I get, the loss is there –as is the ache within. No matter how old I am, I cannot ignore the sadness I feel. Birthdays. I really don't like them.