MOTHER'S DAY

What Should A Grieving Parent Be Referred As?

Spring 2003

When contemplating Mother's Day this year, it is with a lot of pain and trepidation. It's been seven months since my son passed and just the thought of facing this day (last weekend and all week) has been hard. There are no time constraints or limits for grieving and it hits me sometimes out of nowhere. When I am around others is the most challenging because I never feel that I can show vulnerable emotions, such as crying. Attempting to control the emotions within this grieving can be like swallowing a glass full of nails at times; only leaving me feeling more drained. Either way, I haven't been looking forward to this Sunday. Through out the year there have been challenges, many holidays I managed to get through Thanksgiving and Christmas (thanks to my support around me). My birthday was very challenging, which surprised me. I finally figured out it was because Kaleb has always been with me on my birthdays and I remembered all the times we spent together. And now, this Sunday is Mother's Day, last weekend when this revelation hit, it was like a brick wall collapsed on my chest. Instantly I was upset and just had the mental picture of being at Kaleb's grave site no. This Mother's Day my son is in heaven. He never could verbally say "I love you Mommy", he might not have been able to put his arms around me to give hugs either, but his smiles were confirmation of his love. So this Mother's Day I will remember those smiles.

Summer 2013

telling myself "Happy Mother's Day". I've read various things about how there are no terms for a parent that has lost a child; simply because words cannot begin to form or describe within the spectrum of the loss. Then there is the question of whether or not I would still be considered a mother. This was quickly resolved; yes. I will always be a mother. When worrying about facing this weekend my mother suggested that I should be happy and celebrate my son. However, I have found that most suggestions are easier said than done. The best advice is just to take one day at a time. It's o.k. to say "today's a rough day" and you don't have to explain yourself. I've always been an open book, so if someone asked me something (no matter how personal) I would answer them. I figured I don't have anything to hide. I still would like to consider myself that open-book, however with maturity I know that I have the right to say no.

Mother Mary

Contemplating the day we celebrate mothers, I had a slight epiphany: Which I'm sure it is addressed in sermons, however it is a great distraction for me to consider Jesus' mother and how we should all celebrate the mother of our salvation - right? Today, hearing about a young woman having a child out of wedlock is nothing, but back in Mary's day it was considered a high offense. She had full faith in God that he would see her through what He was bestowing upon her. I like to consider this the soul of the mother (and you don't have to have given 'birth' to be considered a mother). The soul of the mother is that unconditional Godly love, the sacrifice of yourself for another soul. Mary knew she would would be chastised for becoming pregnant out of wedlock (it was a capitol offense). She remained faithful to God and He saw her through it. I often have thought about how she must have suffered as a mother, knowing her son was going to face great opposition; still she remained faithful upon the Lord. How horrid it must have been for her to watch her first born be crucified before her; still she remained faithful upon the Lord. To me, she faced so much and clung to her faith and He was with her. Never doubt the possibilities of a mother!!

Z is for Zoo

Fun Field Trips to the Zoo!

There are two wonderful memories I have with Kaleb at the Zoo. One was when his father and I were still married and we took Kaleb to the zoo for the day. It was his first experience and it didn't help that we tried putting him on the hot sculpture of a lion for a photo-op. The second memory is probably my favorite, it was only a few years ago and the school I had been working in at the time, and Kaleb's school had field trips to the zoo on the same day. It was great timing! I got to spend some of Kaleb's field trip with him and we had a wonderful time! I couldn't say if Kaleb ever had a favorite animal - I know he was bombarded by a couple puppies through the years and that could have turned him off to animals. My old cat use to lay in his bed with him, Kaleb would play with him with his feet and Smokie wouldn't move (unless he'd had enough or Kaleb got upset). I think Kaleb preferred the time with the people he loves.We were so blessed that we were able to give Kaleb the experiences and the life that he did get to live. Never take life for granted!!

X is for Xi

In looking for something to write about for the letter "X" challenge in the April Blogging A to Z Challenge, I originally thought like "X marks the spot" or something else. When researching words I came across Xi, which means the cardinal number for 10 (X) and 1 (i) which would mean 11. My son Kaleb would have been 11 this past October, he passed just before his 11th birthday. He died on October 6th, 2013 and his birthday was October 28th. We were planning on having a Baltimore Ravens themed party for him. His Aunt (my sister) and I were starting to brainstorm great ideas and thought it was appropriate that we have the party on his birthday weekend because it was our home-team's bi-week. Besides, Kaleb loved us routing for the games and how crazy we would get - "the crazier the better" - I could just hear him say (not that he could talk - but he esp'ed it to me). Instead, our family got together and I got 11 read balloons. We all wrote messages to Kaleb and then went outside and released them. On the notes attached we wrote about Kaleb, the message of love, and about his awesome smile.

I think there are only 10 balloons in the picture because 1 had popped

G is for Grief

Everyone's Grieving Process is Different

I consider myself blessed that I did not experience a deep loss of death in my family until I was an adult. Growing up I remember being very sad about having to put a cherished family pet to sleep and overall I have always had an understanding about death. But what if you are unclear about death? How could that affect how you view the grieving process? Simple: you question it and the uncertainty could lead to further emotions of anxiety and anger (along with other feelings). I have never questioned my faith or what comes after this life. After the death of my son I find myself questioning everything. After reading about grief, I understand it is part of the grieving process.

Honor the Loss

Before Kaleb had passed I had set up a page where everyone that knows Kaleb or wanted to know what was going on with him could connect. After Kaleb's death it has transformed now into, not only part of my grieving process, but now a beacon of awareness. It's someplace where I can still honor his memory. Number 18 of Good Grief Center's tips for grieving states that working through the grieving process we should "consider reviewing memorabilia, photos, home movies, or videos." Kaleb's page is also a place of healing. Don't forget, it's o.k. and you should talk about your loss. Sometimes I hold so much inside, but I feel better once I talk-it-out and am able to process everything that I had been holding hostage. Also, if you are with someone who has lost a loved one, don't be afraid to talk to them about the individual. I feel like sometimes people might not speak Kaleb's name in fear of upsetting me. It's o.k. - honor their memories by talking about their life and share with one another, you never know...

Take Care of Yourself

Looking back on the past few months there is something that I would have changed. In my grieving process I neglected my physical wellness. I focused too much within my head, as an over-analyzer I often do this. After reading and researching about grief, all of the articles will tell you to take care of yourself. I had a friend who had told me that I should take walks, but I didn't listen (that and we had a hard winter); I do regret letting my health slip. Also, I am an emotional eater... put the two together and it has only complicated the grieving process. Within the Good Grief Center's tips, it also mentioned how "grieving puts a heavy burden of stress on your body" how sleep can be disturbed and lead to other illnesses such as depression, immune deficiencies, and other problems; "grief is not a disease but it can become one." Keep in mind that the process is not a determined amount of time either, grieving can affect you when you least expect it. Just the other day I received something from Kaleb's school teacher in the mail. It was something that was usually sent home on a daily basis when Kaleb was in school letting us know how his day was. It was unexpected and I broke down crying. Grieving does take it's toll; after breaking down I was exhausted. Give yourself time to grieve.

Grief Comes in Different Forms

Another tip that I just read that I might try, is to write a letter to whomever your grieving over. I know when my ex-husband left and I was grieving that loss, I had written a lot out - it helped my brain to process everything that was going on inside of me. You feel relief too because you've gotten it off of your chest. I'm going to do this for Kaleb. Because I wasn't with him when he passed, I feel like there is a missing puzzle piece. I know I am not responsible for his death, as his primary care giver because he was with his father for his allotted visitation, and I was not there - I do feel a sense of uncontrollable loss that I need to address. Then again, when is loosing a loved one controlled? Because I was Kaleb's primary care giver I was his advocate, he required 24/7 care, and we have always been praised for the care and love that we gave to our K-man. So, loosing him so unexpectedly has added to the grieving void.  I'm going to try writing him a letter and when I visit his grave I'll read it aloud.

Stay Healthy - Keep Positive

I think it is crucial that you DO NOT seek an 'escape' - DO NOT abuse alcohol or drugs in trying to mute the pain that you are feeling. I have tried to focus more on my writing during this process. A healthier option would be to cultivate your interests and hobbies, to occupy your mind for a duration of time. Recently I have returned to work. I had once worked at the school that Kaleb had attended, prior to his birth. In considering if I would be able to return there to work, I thought that I should be able to because I had worked there before Kaleb. Being there has been challenging emotionally, but more importantly I found that I feel him more there. It has reminded me how much I enjoy working with challenged children and how valuable I can be to their lives. While Kaleb was here, he not only blessed our lives, but we helped him through his journey here. Now, it's time that I help other children on their journey as well.

Links

Good Grief Center for Bereavement Support - 20 Tips

HelpGuide.org

WebMD Coping with Grief

F is for Faith

FAITH

A loose interpretation of Matthew 17:20 suggests that if we have the smallest of faith (as small as a mustard seed), we can move mountains "Nothing will be impossible for you."  By definition faith is a complete confidence or trust in something or someone. Like the video below demonstrates, as Christians we put our faith in Jesus, the son of God.

There have been plenty of times within my life that I have slipped, or thought I was slipping away from my faith. Not so. When I was mad at God after my son was born with special needs, he calmed my spirit and told me it's o.k.' it's o.k. to be mad at God. I transformed and he gave me the knowledge that He had been preparing me for my son, Kaleb. I had worked in the special education field for years before we were blessed with Kaleb; God was preparing me.

Since I was young I have battled suicidal thoughts. When I was 14 I attempted to take my life by swallowing some pills. To look back now, I was struggling with my life and the hardships that I was going through. If I could tell that girl something, I would tell her life is going to get much tougher and she would be amazed at the strength that she is capable of. What has always pulled me away from the vale of darkness, has been my faith in knowing God has better plans for my life. Also, in battling with these thoughts for so long now, I have realized that life is a gift from Him and I don't want to be disrespectful. I want to go to heaven, especially now more than ever, so that I can be reunited with Kaleb and my loved ones. When I think of ending it all, it has always been because I have lost sight of hope and feel consumed by hopelessness. It is faith that brightens the darkness; faith that I will get to heaven and have the ultimate experience to see Kaleb running around, laughing, and ultimately running up to me to give me a huge hug and telling me "I love you Mommy."

What does faith mean to you?

E is for Epilepsy

Stats and Experience

Epilepsy affects over 2 million in the U.S. (CDC)  and can be referred to as a seizure disorder. Seizures occur when there are disturbances in the brain; I like to think of it as if you were trying to hook up the connectors to jump-start a car battery. Our brain is a vast neuro-electric-pulsing machine that at times could spark and cause a seizure. There are many reasons why a person could have a seizure; reoccurring seizures are part of the definition of Epilepsy.

According to the Epilepsy Foundation, epilepsy is a  "condition which affects the nervous system." There are different types of seizures as well. My son Kaleb had epilepsy and suffered tonic seizures. Kaleb was diagnosed with Epilepsy after suffering severe dehydration, resulting in massive brain tissue loss, before he turned 2 years old. Kaleb was j-tube fed, not through his stomach, but through his jejunum. Because of this he was always nutrition sensitive. We were always concerned about keeping Kaleb hydrated. However, after his doctor's and nutritionist changed his formula, there were major complications that were severe and profound. As a result, never having seizures before, Kaleb was now diagnosed (adding to his other conditions) as having Epilepsy. His seizures would only last seconds, but there are seizures that last much longer within the spectrum and can have severe affects on the body. I have friends that are also diagnosed as having Epilepsy and you would never know. 

Me & K-man Summer 2013

Kaleb's seizures could be triggered by a number of things; a loud sound, lights, touch, heat, and sleep. When I was younger, I was once told that to interrupt a seizure, or seizure like activity, tap the person having a seizure on their nose (not too hard, just lightly). However, when I referred to this at Kaleb's Neurology appointment his doctor (who I never did like very much) informed me that the action would not stop a true seizure. Some say that the full moon will also increase seizure activity, although there are no scientific studies to suggest this is valid. But, I know from experience this to be true.  

His longest seizure was nearly 2 minutes long, he would get reddish in his face (most of the time this was due to him not breathing); not that he didn't always breath. He would draw his body in; meaning his body would stiffen and his arms would stretch out and then in toward one another. His legs would stretch and stiffen as well. Sometimes he would laugh during a seizure and sometimes when coming out of a seizure he would laugh, we referred to this as him "talking to the angels" or a "party seizure". Some seizures include other ticks, such as mouth and eye movements. As well, other seizures would cause Kaleb to become lethargic afterward and he would need to rest. 

While we do not know of what claimed Kaleb's life; his father and I are divorced and Kaleb had been with his father when Kaleb passed.  We still want to be beacons for people to understand his conditions, to spread the wealth of knowledge that we have obtained, and not only share his story but his love. 

To Learn More About Epilepsy, Click on the Links

Centers for Disease Control & Prevention - Epilepsy

Epilepsy Foundation

Mayo Clinic - Epilepsy

CHARGE Syndrome

Kaleb Campbell Townsend 10/28/02 - 10/06/13

Kaleb Was A CHARGEr

CHARGEr refers to an individual that has been diagnosed as having CHARGE Syndrome. To learn more about the syndrome, criteria, and history behind the diagnosis, click here. CHARGE is an acronym; each letter stands for a different abnormality. 

C - Coloboma - Kaleb had a coloboma of his optical discs. What this meant was that he did not see normally. He was considered legally blind.
H - Heart Defects - K-man was born premature, so his heart did not close properly. This was solved in the NICU and he never had heart issues prior to being in the NICU.
A - Astresia - for Kaleb, this occurred in his nasal passageway. As he grew older his openings did grow as well, but it was difficult for certain procedures that he had to go through.

R - Retarded Growth - it wasn't until later that I was informed that CHARGEr's are shorter in stature. As well our Kaleb was born with a small stomach and an enlarged liver. 

G - Genital - abnormalities.

E - Ear - individuals that have been diagnosed with CHARGE usually have the square-shaped ear.

Kaleb's CHARGEr square shaped ear

CHARGE is a combination of birth defects and is diagnosed as a genetic disorder. The spectrum goes from individuals that are unaware that thy have CHARGE - to severe medical conditions and handicaps. According to The CHARGE Syndrome Foundations website the disorder "occurs in about one in every 9-10,000 births worldwide". Lucky us! While Kaleb had many challenges, his CHARGEr personality shined through. His smile was proof that no matter the obstacle, the human spirit perseveres. We miss his smile everyday, but are thankful that God blessed us with such a sweet angel. 

Links

The CHARGE Syndrome Foundation

Kaleb's Facebook Page

No Night Nursing

Having a son with special needs, he requires 24/7 care. Through his insurance he is allotted 8 hours of nursing a night. The reason he has to have someone monitoring him around the clock is because he has a trach (tracheotomy) to help him breathe and a J-tube (jejunum) for his formula feeding. Kaleb can have nothing by mouth. We let him have a very tiny taste once in a blue moon, like a little (tiny) bit of icing from his birthday cake. We have to be careful because he has micro aspirations. This is due to his tracheotomy, there is a flap that covers our esophagus so that when we swallow the fluids do not go down our bronchial tube to our lungs. Kaleb's flap does not close enough and small secretions can escape, going to his lungs and could cause further complications.
Because Kaleb requires 24/7 care, we have to have a nurse come into our home for Kaleb. This was very awkward in the beginning, trying to relax and go to bed was nearly impossible when a stranger is watching your medically fragile son. It gets better once you get to know the nurse and build trust. However, I have learned (the hard way) you should keep a professional relationship because, unfortunately, people can take advantage of your trust.
So, when a nurse is unable to fulfill their shift, usually there is no coverage. So then, it is up to me to stay up and take care of Kaleb. This can be more challenging and difficult when multiple nights are required and you have responsibilities during the day that will not permit you to rest. I heard once that interrogators will keep their prisoners awake, and after experience going days without adequate sleep, I can totally see how extreme sleep deprivation can be torturous.
On a positive note - Kaleb went to school today so I was able to get a couple hours of good sound sleep. It is both important for our mental and physical health. Lack of appropriate rest can result in various health concerns that can be very serious. I know when I do not have enough sleep it affects me physically by my symptoms of nauseousness and dizziness and mentally with irritation and depression. As caregivers it is crucial that we take care of ourselves.