Boy to a Man 07/01/2010
 I remember the first time I let go of Jaycee long enough for him to go to Hematology camp. He was probably about 10 years old. Oh, this was a huge decision for me. Jaycee had no fear about leaving and was excited about all that camp had to offer; I on the other hand, had already played out in my mind everything that could go wrong. I don’t know if every mother has a tendency to do this, but it seems that I have perfected this ability. (Just for the record it really serves very little positive purpose) There were so many things that were learned through the experience of letting Jaycee go to camp. He learned independence and I was learning to let go. Once again letting go was a lesson that I needed practice at perfecting and I fear that I will never be quite where I need to be with that lesson. I have finally learned that letting go is, in part, a matter of learning to relinquish control. With Hemophilia, at times, I felt there was so very little I truly had control of, but I could control if I was there with him, holding him for sticks, questioning the doctors and nurses, taking down names and titles, researching everything about Hemophilia, knowing who was doing what and why, keeping track of how big a bruise was, where his bleeds were, who he played with, and teaching him to breathe through the sticks. But I determined that with camp, although I was informed of where he was going so on so forth, I was not there to see it for myself and experience it and therefore was not in control. Things have come full circle now……now instead of being gone for a week at camp my 21 year old baby is gone for the summer to an internship with Bayer Healthcare in New Jersey. Let me say that again…….New Jersey!!!! In my opinion that is a loooong way from Ohio. I only know of his experiences by what he shares with me. His experiences are now truly his own and I must learn and embrace that I have very little place in that….. and rightfully so. That is what is healthy and the natural order of things. I am now seeking to continue to discover who I am separate from a mother. Although my experiences of being a mother of a small child with Hemophilia are etched in my memory and my heart, I must now travel to a different place in life that teaches me to relinquish control and be content with what is shared with me by my baby boy who has now become a man. This is your new blog post. Click here and start typing, or drag in elements from the top bar. A Year Ago........ Part Two 02/16/2010
First I want to say that I don’t write this to contribute to anyone’s fear or anxiety about having Hemophilia or having a child with Hemophilia. I also do not recommend that small children with Hemophilia read this blog. In my opinion, this blog is more for young adults, teens, and adults who are impacted by Hemophilia. What I write about are simply my experiences with Hemophilia that have changed me. I chose not to sugar coat them. Not everyone with Hemophilia will experience the trials that have been part of our journey with Hemophilia. Yes, there have been many great times, but these times are not typically what make my story different than most….it is the struggles that I have encountered while raising a child with Hemophilia and my path to acceptance. This is what is on the forefront of my mind. It is what has changed me. (click the play video, it is Jaycee’s hand finally stopped swelling and I thought the worst of the situation was behind us. It was bad enough that his hand was suspended over his head in a contraption that the nurses constructed to help stop the swelling. After a few days his hand begin to turn the deepest color of purple that I have seen in quite some time, but so far Jaycee was tolerating the pain and tightness of the swelling pretty well. He was still able to flirt with the nurses at this point. It was only a matter of time before we were able to go home I thought. With this knowledge I left my 19 year old baby in the hands of the doctors and nurses while I drove to attend some of my college classes and internship that was required for me to graduate college. Because I was still a bit uneasy and feeling guilty about leaving Jaycee “alone” I called upon my sister who had a small window of free time to go to Columbus and sit with Jaycee. She called me several times to keep me up to date on how he was doing. At this time I was completely emotionally torn between being with him and fulfilling my obligations for school. Some may say, “Well there is no competition there,” and if the circumstance were different….if he was still a child… then I would agree, but it wasn’t that easy for me in this case. I often have a hard time allowing Jaycee to be independent and I was fighting with myself to allow this to happen while he was improving at the hospital. I had waited until Jaycee was in high school before I went back to college. Why did I go back college, in part, because one day, if I do my job as mother well, my children will not need me the way they needed be when they were younger. I needed something to help shape me outside of the role of motherhood. While I was gone Jaycee was visited and nurtured by my sister and church members. I still was under the impression that things were tolerable with Jaycee. I went to bed that night with plans to go back to the hospital the next evening. When I awoke I could not shake the feeling that Jaycee needed me. This feeling was so strong it was almost overpowering. The feeling “I need You” was almost audible and I could not shake it. I cancelled my classes and internship and called my husband at work to ask him to drive up to the hospital with me. We left the house and within 20 minutes of a two hour drive my cell phone rang. I looked down and saw that it was Jaycee calling. Just in those few seconds it took for me to answer the phone I thought…. “Good, see Jaycee is fine. You are overreacting once again.” I answered the phone to hear Jaycee SCREAMING!!!!! “Mommy, PLEASE it hurts so bad” Mommy PLEASE HELP ME! My heart flew to my throat. Oh my God what is going on with him? Jaycee managed to say…..the pain….its shooting through my hand…Please make it stop! With that the phone went dead. For a moment I felt like I was going to be sick to my stomach. I tried to call Jaycee back but he wasn’t answering. I began to cry and speed down the highway. I gathered my wits enough to call the nurses’ station… to which I could hear the uncertainty in her voice. I demanded to speak to a doctor. The doctor was so calm that it infuriated me. I assumed the situation was not being taken seriously. I was wrong, but didn’t realize that until much later. I made it to the hospital in record time. By the time I made it to Jaycee’s room he was resting. The doctor’s had given him enough pain medicine to make him comfortable. After speaking with them I was told that although the pain Jaycee was experiencing is excruciating, it is actually a sign that the nerves in his hand are beginning to repair themselves. Prior to this the doctors had feared that the swelling had cause irreversible nerve damage and Jaycee would lose his mobility. This was the start of many sleepless nights for Jaycee and me. I did not leave his side after that episode. After several pain team consults, time, and occupational therapy Jaycee begin to get his pain level to a degree that he could cope through. Even to this day I question my choice of “leaving him” at the hospital for that short time, I have a hard time “reliving” the phone call that he made. One blessing that came from this situation is that Jaycee does not remember “the call” and very little of his hospital stay. I on the other hand remember everything. There were many people that pulled together to help Jaycee and myself get through this extremely tough time. My husband , my sister, my church family, the doctors, nurses, all who sent cards and best wishes, prayers, and a phenomenal psychologist. I do not want to relive that event. I will be honest….. that is one reason why it has taken me so long to finish this chapter of my blog. “God grant me the strength to accept the things I cannot change” A Year Ago........ 10/22/2009
A year ago this October I witnessed Jaycee go through one of his worst bleeds. Things seemed to be going pretty good. Jaycee was going to his college classes every day and was spending a lot more time on campus. He was really getting the hang of treating his Hemophilia and being an independent college student. He would often “hang out” with buddies and spend nights at the dorm. He was also enjoying being involved in the Grande Chorale which is a college audition choir. He was very excited about singing with the choir at the Bob Evans Farm Festival and I was excited to watch him perform. The festival arrived and on opening day the choir performed on stage. They and, of course Jaycee, did great. He was singing his heart out. He was so strong and so grown up. I would briefly look away from the stage and when I would look back I would catch a glimpse of who Jaycee wanted to be…..independent. After the stage performance, I caught Jaycee behind the stage and kissed him telling him how very proud I was of him. The choir was set to do walking performances throughout the day and his friends were waiting, so my congratulations were brief. Later that evening Jaycee called me from the dorm to let me know he was having a bleed in his hand…... No big deal he assured me. I briefly let my mind think of the worst but pulled myself back and talked myself into assuming it wasn’t serious. I had already reminded him to factor, ice, elevate and Tylenol……all of which he had already done. The next day Jaycee called me to let me know he was still having trouble with his hand; although, he didn’t appear to be overly concerned. He stated that he factored again, took more Tylenol, and put his arm in a sling to prevent his had from hanging down. This was to help lessen the swelling. I was desperately fighting against running down to the college and “taking care of my baby,” but he was doing everything for his hand that I would have done. He continued to perform that day, in spite of the insistence of his choir director and friends to go to the doctor. It is amazing what becomes “normal” to those who have Hemophilia. However, this bleed was anything but “normal.” I was unaware of how serious this bleed was getting. Later that afternoon Jaycee called me and said, “Mom I am going down to the hospital my hand is really getting bad.” His friend drove him to the hospital and I left the house immediately. All the way to the hospital I was having a conversation with myself. I would say things like, “I am sure this is no big deal.” Right as I would have that thought I would think, “Oh my Gosh it has to be pretty bad for Jaycee to decide to go to the hospital.” When I got to the hospital and actually saw his hand I was flabbergasted. His hand was HUGE. I asked him, “Jaycee, did you factor?” “How many times?” “Did you bring yourself up to 100%?” Jaycee had done everything right but something was wrong. We ended up going to two local hospitals before Jaycee’s condition was taken seriously. He ended up being transported by the EMS to Nationwide Children Hospital. He stayed a total of 12 days. Bottom line….his factor was not bringing his clotting levels up and he was continuing to bleed into his right hand. His hand became so swollen they were afraid his skin was going to split. At first I thought this was as bad as it could get. I was wrong. To Be Continued.. Time Passes 10/08/2009
 Time passes so quickly and, as a mother, when in the moment you do what you think is best. Looking back there are a few things I would have done differently. I have to admit I was a mother who worried. I don’t know if that came because Jaycee had severe Hemophilia or if I just would have been that type of mother any way. I have made leaps and bounds with regards to this characteristic but I still have not grown out of that “phase” completely……….actually I still have a long way to go. When Jaycee was little he loved to ride his bike I was so fearful of him doing so, but I swallowed by fear and “allowed” him to learn to ride his bike. Actually I was the one suiting him up for the endeavor. I was also the one holding on to the seat of his tiny bike. At first it was “Don’t let go mommy!” Then as time went on it was “Let go Mommy!” Although I was along for that journey with him, I am afraid that I wore my fear on my face. I tried to be strong for him and not let him see my fear, but that was pretty hard especially when he was headed for the only tree we had in the yard. It was hard to let go and allow him to explore and fall and learn, but that was what all mommy’s do…..we let go. It is somehow not fair that to be a good mom you teach your children to leave you. You spend a short time holding on to them and while doing so you seek to teach them independence. When the time is right every child needs this gift….. the gift of letting them be who they chose to be. Jaycee came home the other day and told me about his hideous nose bleed he had during class. My heart ached for him as it always does when he is faced with a challenge. I have had to learn over the years, as he has gotten older, to step back and allow him to seek his own understanding and wisdom through these situations. It has not been easy to " allow" him to do this without me rushing in and trying to "fix it". I have also learned over the years that I cannot fix it. Jaycee has become the strong, insightful, empathetic, determined young man that he is today, in part, due to the life lessons he has learned through his struggles and success while living with Hemophilia. While traveling through this stage of my own life in which I am needed to stand back and let him grow, I lean on the following prayer Serenity Prayer God grant me the Courage to change the things I can change, The Serenity to accept those I cannot change, And the Wisdom to know the difference But God, grant me the Courage not to give up on what I think is right, even though I may think it is hopeless. My View 08/19/2009
I had hoped to write on this blog in order of events of Jaycee’s life, but I am going to divert from that plan. I must write about what is in my heart currently.  What I see when I look at this Picture. The train track represents the track to manhood...He is giving me one final look back...I know this sounds weird but it is what I see. When he was in kindergarten every morning he would wave at me from the bus window until he couldn't see me anymore. He would look back until I faded from his sight. Then one day it changed...he climbed the steps to the bus and sat in his regular bus seat. I was prepared, as I always had, to reassure him with my gentle waving until he was out of my view. Instead of seeing his little face pressed against the window waving feverishly on this day, his attention had been taken by a little blond haired girl. It was happening. Although it would be years before he would break from my sheltered grasp, he was one step closer to the man he would become and one step further from the child that I had protected. One thing factor won’t fix…………is a broken heart. THE BEGINNING CHAPTER 2 05/13/2009
Jaycee was flown to Children’s Hospital in Columbus Ohio. After what seemed like a life time I was told that he would probably not make it through the night. I was beyond sad. One of the worst feelings I have experienced thus far in life is the feeling that your child is in pain or danger and you are helpless to fix it. Well, Jaycee was a fighter and made it through the night to the astonishment of the doctors. I was then told that although he had survived the night that there was little hope that he would ever be able to be to function typically. He would not be capable of feeding or dressing himself and would need extensive care for the entirety of his life. I do not know how I processed that information….I was numb. The Beginning 01/29/2009
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Hi, my name is Candie and I am a mother of a 21 year old son (Jaycee) who has severe Hemophilia A. I am also the mother of a 17 year old son (Nick) who does not have Hemophilia and a 16year old daughter (Kaylee) who is a carrier. |