Late at night

You know, I always feel a little guilty for staying up late at night. On one hand, it is a time where my husband and I can have some down time after the boys go to bed. On the other hand, we stay up so late! I have always been a nighthawk anyway, so I don't know what to think about this.

Tonight while tooling around on my blog, I have seen things that remind me of Glennie, and remind me of disease and pain and strength and courage. Take Jonah Williams. Jonah is a 3-month-old baby boy with Epidermolysis Bullosa. EB is an extremely rare genetic condition where pressure on the skin causes painful blisters and other problems. You can read about Jonah by clicking on the "Pray for Jonah" button on my sidebar. Many babies with this disease don't make it past one year. Jonah is a beautiful boy, with big blue eyes that remind me a little of Glennie's. Lately I have been drawn to stories of children with serious illnesses. I'm not sure why; I guess I want so much to help in some way. It's amazing to me to see such fragile-bodied children like Jonah and Glennie with such strong and courageous spirits, children who can glow and smile and laugh through what they are enduring. It is also amazing to me the lessons they can teach us and the lessons that God is trying to teach us through these precious little lives.

I don't mean to be a downer, but I really felt the need to write this post. It is at times like this when I wish I had more money or more resources so I could give it away to those who need it the most. For starts, I will pray every day for children like Jonah and their families. I know all to well what it is like to be told your baby is going to die due to a disease you have never heard of. Even if I didn't, prayer is still necessary and needed.

Scrumdiddilyumptious Oatmeal Raisin Cinnamon Chip Cookies

Here is what you need to do: Go to the grocery store, and see if you can find some Hershey's Cinnamon Baking Chips. They are in the baking section next to the chocolate chips. If you can find them, buy them then use this recipe:

http://www.hersheys.com/recipes/recipes/detail.asp?id=6197

I am on a baking kick lately and really seem to like baking and cooking new things. I am always on the lookout for treats that don't involve chocolate but are still tasty to me, as Glenn hates chocolate and I like to make things that everyone can enjoy. I made these in bars, and though they were too crumbly to really cut into squares, they are absolutely delicious. Everyone had a taste, and we are going out again to the grocery store tonight to get some vanilla ice cream to eat with them for dessert tonight. I think I myself may skip dinner and just go for the Oatmeal Raisin Cinnamon Chip bars with vanilla ice cream and a cinnamon dolce latte made from my Dolce Gusto. Making stuff at home rules!

Mother's Day

Our precious boy Glenn III passed away on May 6, 2004. It was a Thursday. We held his memorial service that Sunday, which was Mother's Day. It was a warm, sunny May day that had a surreal feeling about it. Here we were, going to our baby boy's funeral. Come to think of it, Glennie's burial outfit was quite fitting for that day. He was wearing a one-piece outfit that had "Mommy's Little Hero" on the front. We were overwhelmed by all the people that packed into his service to show their love and support; family, friends, Marines from Glenn's squadron, Glennie's doctors from Children's Hospital of Philadelphia and his home care nurses, all who so lovingly cared for him during his illness.

Since that Mother's Day in 2004, there has been a certain uniqueness for me on this day. It is hard to explain, but it is almost like a unique, heavenly sense of peace and comfort. That's all I can think of to describe it. I am very thankful and blessed to be the Mom to my boys Jeff and Jack, and on this day more than anything I just like to enjoy my day in their presence. I also know that I am the Mom of an angel, and I reflect on that more than ever on my very special Mother's Day.

Thank you, Lord, for my three boys. Thank you for their spunk and wildness and laughter. Thank you for choosing us to be their parents. Thank you for Glennie's life and the time we had with him, and thank you for choosing us to love him and care for him. Thank you for my Mother's Day.

The Hand We Are Dealt

Our first son, Glenn III, was born September 16, 2002. Like any parent, it was a day that changed the rest of our lives. He was born without incident and was beautiful, and we were thrilled to take him home and start our new life as a family of three. Throughout the several months after Glennie was born, we had noticed a few strange things about him, but being that we were brand new parents and that his doctors never seemed very concerned, we dismissed the issues. They were things like how Glennie seemed to really breathe hard from his belly and how by 4 months he couldn't lift up his head. At his well-baby appointment, the doctor said that Glennie was just slow in developing and told us to give him some more tummy time to strengthen his neck muscles. Glennie hated tummy time and cried the entire time, but we believed it was for his own good. He also began to sweat when he nursed around that time as well.

When Glennie was 6 months old, we took a trip to New Jersey to visit Glenn's family, and after taking one look at him, Glenn's parents knew something was wrong. A few days into the trip, they convinced us to take him to the Emergency Room at the Children's Hospital of Philadelphia. Once we got there, the doctors knew right away that something was wrong as well, and Glennie was admitted. He lacked muscle tone and was not meeting his milestones.

Throughout the next year, there are some details I remember with absolute clarity and some I don't remember at all. I remember the morning after Glennie was admitted, a doctor named Dr. Finkel came in to talk to me. He was the head doctor on the Neuromuscular Clinic, and his special interest was in Spinal Muscular Atrophy. I don't really remember all that he said, but basically he did say that although the final diagnosis was not made yet, Glennie most certainly had Spinal Muscular Atrophy, type 1, the worst kind. He said usually babies with type 1 don't make it to the age of 2. I was alone in the room at the time Dr. Finkel came in, as I had spent the night there with Glennie. The next thing I can remember from that time is being with a group of people in the hospital room. I know Glenn was there, Glenn's parents, some relatives, and also a few friends from church, and I remember we were all sobbing at this grave news, huddled together knowing that Glennie would die before he had barely even begun to live.

The next year was spent in and out of the hospital. At first, Glennie had to get a gastric tube put in his stomach, as it wouldn't be long before he would lose his ability to swallow. He lost this ability shortly after the tube was placed at about 7 months of age. He never was able to hold up his head or roll over. He could move his hands, feet, fingers and toes and the muscles in his face, and that was all. Such is the nature of SMA, it robs children of the ability of movement and eventually the ability to survive.

Glennie was diagnosed in March of 2003. Over the spring and summer, we spent more time in the hospital than out of it due to surgeries, a colon blockage, and respiratory viruses. Even a cold could be deadly to Glennie, as he had no muscle strength to swallow or to cough up any secretions. One simple cold or virus could cause blockages in his airway and would cause partial collapses of his lung. He would need to be intubated so that he could recover and would have to be slowly weaned from the ventilator, and this process often took months.

From August to December of that year, we were able to spend a miraculous five months at home. Glennie was staying well and although the disease is progressive, he was doing well with our home care nurses and with Glenn and I taking care of him. He received numerous medications and feedings through his G-tube, as he could not take anything by mouth. He received respiratory treatments every 4 hours, which consisted of using an in-exsufflator to pull secretions out of his airway and then suctioning them out. He wore a BiPAP for naps and to sleep at night. Glennie's lungs and weak respiratory muscles worked hard to breathe every day, so the BiPAP machine provided his lungs some rest as he slept by helping him breathe. It also helped rest his lungs if he was sick and wasn't intubated.

A couple weeks before Christmas of 2003, I was awakened in the wee hours of the morning by shouts of our night nurse, Pat. "GLENN!! AMANDA!!" she yelled urgently, twice, before I realized what was going on and leapt out of bed. Glennie was in dire straits. His O2 and heart rate were dropping fast, and Pat was able to get him stabilized as Glenn called 911. One of many fast and furious trips to the ER was made, again, this time by ambulance. Yet again, we waited in the ER with family, wondering if this was going to be the day, wondering how many times in their life a parent can do this, can watch their child, their baby, struggle for life and breath.

That was one of many times Glennie was able to be stabilized, and one of many times we were able to breathe a shaky, temporary sigh of relief; temporary because we knew that unavoidable day was going to come.

Glenn, Glennie, and I spent our Christmas there at Children's Hospital of Philadelphia, our little family of three. Once again, we were in and out of the hospital that winter and spring, and were able to go home yet again at the end of April 2004.

On May 6, I knew that day that something wasn't right with Glennie. He seemed tired, and he had seemed tired since we had been discharged from the hospital at the end of April. He was struggling that day, and by late afternoon the nurse and I were rushing him back to his bedroom to get him started on his O2. As our nurse Angela worked at one side of Glennie's crib, I stood at the other, talking on the phone to one of his doctors from CHOP. As I stood there on the phone, I watching Glennie's numbers plummet once again. I told the doctor I had to hang up and call 911, and she told me to keep her posted. This was the first time in my life I have ever called 911. The paramedics rushed to our apartment, and Glennie was loaded onto the gurney, where I distinctly remember one of the paramedics strangely asking me if Glennie was blind. I think she was taken slightly aback by his very bright blue eyes. We rushed Glennie out of the apartment.

I followed the paramedics and Glennie out of the apartment, and gave Angela a quick hug, as she was going to stay behind and finish her required paperwork at the end of her shift and lock up the house. I walked behind the gurney, and everything almost seemed surreal. I noticed the kids who lived in the apartment below us had come out onto their porch and were watching what was going on. The medics loaded Glennie into the ambulance, and as they did, the bottom of the gurney hit the bottom step of the ambulance, jolting the gurney. I noticed that Glennie did not move. I climbed into the front seat and waited as we prepared to get going. I noticed that it was almost 5 o'clock, according to the clock on the dash. We did not go to the ER at CHOP, as there was not enough time. Glennie just needed to get to the nearest hospital. At some point during this time I had called Glenn, and Glenn and his parents were en route, their phones glued to their hands.

Once we got there, the medics were performing CPR on Glennie as we rushed in. Once in, they got him into a room that became so flooded with medical personnel that some were asked to leave by the doctor in charge. I was taken to a small family waiting room where I met Keva, the social worker. I will never forget her name as long as I live, nor will I forget her beauty and her gentle spirit. I told her about Glennie as we waited and silently prayed. It wasn't long before the doctor came in and gently and sadly told me they were doing all they could and still had some things to try. She left and Keva asked if she could pray with me. We did, and silently in my mind I asked God to take away Glennie's pain, to not let him be afraid. I wanted to be in there with him so that he wouldn't be scared, but I knew I couldn't.

The doctor came back in. With tears in her eyes, she told us they did what they could, but that Glennie was gone. At this point, my mother-in-law had arrived at the ER and raced into the room. "He's gone? HE'S GONE?!" my mother-in-law screamed, as we fell into a heap on the waiting room couch, sobbing hysterically. I cannot even explain that moment, that day, where the sky fell down on top of us.

I was allowed to hold him one more time if I wanted, and I said yes. They cleaned Glennie up a little bit, and I was allowed in the room, the room where Glennie quite possibly breathed his last breath. I sat in a chair and held his body as people began showing up. My father-in-law, and Glenn, who ran into the room frantically and in a panic in his softball gear, only to find out Glennie was already gone. Glenn's sister Sarah came in, as well as our Pastor Joe and our old friend Shari. Shari has known Glenn and his family for a very long time as the mother of Glenn's best friend, Jim. We all stayed for a while, and it was decided that Glenn and I should be the first to go and that our family would do whatever was left to do there at the hospital.

The rest of the day was numb. We went to stay at Glenn's parents' house, as Glenn and I did not want to go back to our own apartment with Glennie's now empty room. I remember we went home and turned on Survivor, our favorite show, just for some mindless entertainment and distraction from the day, but we were pretty much numb to everything. There is not much that can be said at all on the day your child dies.

Glennie died on a Thursday. We held his memorial service that Sunday, which was Mother's Day. We held his burial the next day, on Monday, as I did not want to bury my son on Mother's Day.

A few weeks later, my mother-in-law told me that she knew something was horribly wrong as she ran into the ER that day. She said everywhere she looked, everyone was crying. Doctors, nurses, receptionists, even the EMTs standing out by the ambulance were crying. You simply wouldn't be human if you were not devastated by the struggle of this little boy, this baby.

It wasn't about the struggle Glennie faced just that day, but the one he faced his whole life. He depended on machines to help him breathe, or to breathe for him. He depended on machines to feed him and to keep his airway clear because he didn't have the strength to do it himself. He depended on me, his mom, to exercise his arms and legs every day because he couldn't even move them. He depended on doctors and nurses and even his family to save his life numerous times throughout his 20 months of life because SMA is that cruel and harsh and devastating. This is the nature of SMA, crippling and progressive and fatal and, at this point, incurable. He depended on Glenn and I to do what we thought was best for him and to make life-and-death decisions on his behalf.

There are so many horrific stories that can be told about SMA, even just the ones that Glenn and I and our family experienced firsthand. There were so many times we and our families watched Glennie suffer terribly due to Spinal Muscular Atrophy, and there are many others like him and many families like us who face these devastating circumstances and heart-wrenching decisions every day, families who face uncertainty and know the pain of a broken heart on a daily basis and can feel death at the door.

This post is long, but is only the tip of the iceberg, only a small glimpse into the life of a family who deals with Spinal Muscular Atrophy. I felt moved to write it through the pain and tears because I want others to know about SMA and that we need to do what we can to cure it.

http://www.petitiontocuresma.com/

The signature goal for the Petition to Cure SMA is 100,000, and it is currently at 57,200. We need more signatures!

http://www.fsma.org/

http://www.smasupport.com/

http://www.our-sma-angels.com/

SMA

From time to time, I hear about the passing of another child with Spinal Muscular Atrophy. Tonight I read about a boy named Jarred. He was 9 years old with SMA Type 1 and passed away a few weeks ago. With each child, my heart breaks all over again, because I know exactly what it is like to lose a child to this disease. I know what it is like to go to bed that night, broken and knowing nothing will ever be the same. I know what it is like to wonder, "Where do we go from here?" No words can express what it feels like to lose a child, whether it be to SMA or something else.

Tonight I was looking at the Children's Cancer Association web site, and they have a Hero Kids section. So many kids, including Jarred, who fight daily battles with SMA or leukemia or a number of other horrific things. It's amazing and mind-blowing to me to see the courage and strength and determination of these precious children who are dealing with their fragility and pain and mortality on a daily basis. They show us what life is about, and truly what it means to be strong and have courage. They inspire us to be strong no matter what hand we are dealt in life.

http://www.childrenscancerassociation.org/hero_kids/

When our Glennie was diagnosed with SMA, and throughout his life and even now, me and my husbands favorite verse is Joshua 1:9-

"Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go."

Words to live by.

Cleaning and Junior Fawf

It has been a while since I posted, so I will give a brief update. We went to NJ, where Glenn headed to MSG School in Quantico, VA. We were dropped from the course due to medical issues, and the few weeks he was there was a difficult time, and I will spare you the details. It was difficult because we were unsure every day what was going to happen, I was missing him terribly and also missing my home. However, I think we learned a lot during that time. I learned to lean on God more and to wait for His timing. I also feel that now after living with my mother-in-law, I am managing my time better at home, and I think also keeping up on the laundry a little better. I have OCD with things like germs and checking things, but I think she has OCD with laundry! I also witnessed her going on a cleaning spree at midnight one night that lasted until 3 am, and I actually assisted her with this spree until I got scared and fled for my life, fearful that I would end up in the garbage can with the piles of stuff she was almost blindly chucking away. Oh, and it also happened to be about 1 AM.

So, we are back at home now after 2.5 days on the road. It is nice to be home and in the San Diego weather again. Every day when I get up I just soak in the sunshine and warmth and the light, cool breeze.

Anyway, while we were on our trip home, the second and last hotel we stopped was in Tucumcari, NM. We stayed at a Best Western and woke up early the next morning, eager to reach home that night for a few reasons, one of them being that we couldn't afford another hotel. We got in the van, and Glenn drove up to the hotel entrance to check out. As me and the kids sat there in the waiting car, Jeff said to me, "I have a new name, and it starts with a K now." I asked him what his new name was, and he said, "Junior Fawf." I couldn't understand what he was saying at first, so I asked him a few more times, and finally realized that, according to him, his new name was Junior Fawf. I figure maybe the "K" is silent, like Kjunior Fawf? I asked him where he got this new name, and he said, "In the bed at the hotel." Did God come to him in a dream and tell him that he shall now be called Junior Fawf? I guess we will never know.

My funny guys

The other night, Jeff asked Glenn and I if we wanted to play hide n' seek, and we agreed. I was "it" first, so I sat on the couch and counted to 20. I heard Glenn and Jeff run upstairs, and as I finished couting I announced "READY OR NOT, HERE I COME!' I started up the stairs, and as I did, I could hear, "Hee hee. Hee hee hee." from the bathroom at the top of the stairs. "Hmmm, I wonder where Jeff is," I thought to myself, and found him in the shower, giggling. Jeff was the next one to be "it" so he counted to ten twice (he didn't know how to count to 20) as Glenn and I ran upstairs. I hid in the boys' closet while Glenn hid in ours. I heard Jeff come up the stairs and go into our room. He came back out and then went downstairs again. I then heard a crash and Jack say "Uh-oh", but I suspected it was the high chair that we had put over the gate (so Jack couldn't climb on it) being pushed over. For the next few minutes, I heard nothing except the sounds of Jack playing. I began to get nervous, wondering if Jeff had duped us into playing hide n' seek so that he could wreak havoc downstairs. I crawled out of the closet and found Glenn, and he went downstairs to see what was going on. Apparently, he was still looking for us downstairs I guess, but I still don't know.

At that point, we confined the game to upstairs and decided it was better to have Jack play upstairs. I was "it" again by this time, so I counted to 20 on the landing and went upstairs. As I climbed, I heard Jeff say, "Will you stop it?" I followed the voice into our room and noticed Jack standing by a laundry basket full of clothes. He was poking the clothes on top, and then pulled some of the clothes off the top. There was Jeff's little face, looking up at me from the laundry basket. "I found you!" I exclaimed, as Jack flopped his little hand around in a wave to his brother.

The game went on several more rounds. We decied to quit when Glenn would hide and Jack would stand, crying and screaming, "Daddy!" or when I would hide and he would scream "Mommy!" I know I will never forget the sight of Jack poking the clothes and revealing Jeff's hiding place. Too funny!

Tonight, as I waited for Jeff to get undressed and into the shower, he ran behind the partition wall towards the bedrooms because he didn't want me to see him get undressed. He then came out, naked and giggling. I called him silly, and he pointed at me and said, "You have a silly willy!" I explained to him that I don't have a willy, that I am a girl and girls don't have willys. He then pointed at me and said, "Yes you do, you have a willy in your pants!" I really did not know what to say to that and decided to let Glenn do the willy talk, so I just told him to get in the shower. This kid......