A window to a soul

Having A Special Need Child

Nothing can possibly prepare you to become not just a parent, but a caregiver. To see your child in pain is the worse thing in the world, not to imagine that what my baby was born with is a lethal condition.

Nicky newborn Soon after he was born (by c-section) they showed him to me and he was absolutely perfect, he looked a lot like his big brother Alex who died at full term, but he had a much smaller mouth, had a lot less hair, he was blonde instead of dark haired...and, most important of all, he was breathing (major thing for me after a stillborn baby)!!! They took him to the nursery to run all the newborn tests, and everything "looked" normal at first except for his mouth. After they aspirated all the liquids from his mouth it started bleeding and losing its skin. A few hours later they finally brought him to me to nurse, and this was the first and last time I ever remember thinking of him as a normal baby, even with his mouth problems. I was cradling his little sleeping body in my arms and I was in heaven. The only thing that ruined the moment was my tiredness, I could not keep my eyes open, even with all the adrenaline of seeing and holding my baby! I felt like such an terrible mother. I had gone 2 complete nights without any sleep, I was hungry, tired and I felt horrible. There were tubes attached to me all over the place, but I was at peace seeing my little Nicky sleeping. He refused to nurse, but who could blame him? That was the one and only time that they ever brought him to me.

Around 8 am the pediatrician came into my room to tell me that they had to put Nicky in NICU in an incubator because of the problem with his mouth. They thought is was either a "Staff Infection", "Herpes" or some rare skin disorder called "Epidermolysis Bullosa". By then, in fact, he had started blistering all over the place.
They told me that they had contacted a dermatologist and that he would have come there that same morning on his way to the Children's Hospital in Phoenix from his office in Tucson. When he arrived it was around noon, he told me that he had seen Nicky and did some sort of test with the eraser from a pencil and he wrote down the name of the skin disorder for me... Epidermolysis Bullosa. At this point I had not seen any blisters yet, so I thought... so what, so he blisters easily, big deal, he is alive. In the next few days and weeks, and months, and years I would unfortunately find out what a really BIG deal EB is indeed. Dr. H mumbled something about us having a 25% chance of this reoccurring in another pregnancy and then he wanted my signature on a piece of paper to let them take a skin sample for a biopsy. I was in a fog, I was drugged, I couldn't get out of bed on my own, I would throw up everything I tried to eat, and I still had not had a few good hours of sleep, so my mind was not clear, this is all I remember of Dr. H's visit unfortunately. The nurse took me down to NICU in a wheelchair and then left me. I was stunned to see that my baby had been put in isolation. They had to put an IV on him because he could not eat since his mouth was in such a poor shape, and he was attached to a heart monitor and other things. He was in an incubator to keep him warm, had no clothes on him aside some bandages and the diaper. They were keeping the tubes attached to his tiny body with gauze. They could not use tape. The tape had already damaged his tummy, and the hospital bracelets that they had put on his ankles had done some serious damage as well.

I went back to see him later on with my mom and my MIL, and it was there that Nick called me in tears. Earlier he had come to see us, and I had given him the name of that strange skin disorder. Now he had had the time to research the Internet about it, and he was completely devastated. He told me that he would most likely die from this. The Neonatologist comforted us a lot, and told us that EB is something that could be lived with. Another nurse told us that he had seen a newborn with EB before that did not survive, but that was in much worse shape than Nicky and that, unlike him, this baby's wounds never healed. We did not know what to think.

The following day I walked on my own to see Nicky in NICU and I spent lots of time with him. I got discharged the morning after, Thanksgiving day. I really didn't think I was ready because I was still in a lot of pain, and I didn't like going home without Nicky. Some people told me that they did not know how I could bear going home without Nicky, but I told them that last time I went home without my baby, Alex was in the morgue, and this time it was a lot easier knowing he was simply in NICU. I went to the hospital every day even if I had to be put into a wheelchair from the pain once I entered the hospital. Every day I would spend hours holding him, talking to him, rocking him, feeding him... Nicky in NICU I could have never imagined to love a child as completely as I loved Nicky... yet I was so devastated both that I did not get to enjoy Alex this much, and that Nicky was in this much pain. Since I was pumping the milk for Nicky I could not take too much medication for the pain, but I felt Nicky needed the breastmilk more than I needed the pain to go away. The Neonatologist told me that they could not let me take him home until they figured out a way to make him eat on his own.

Using a little creativity, the nurses and the Neonatologist were successful in making him eat from a bottle. He could not suck much because his mouth was so sore, so they used a "Haberman feeder" to squeeze the milk into his mouth. They used some lidocaine for his mouth so the bottle would not cause any pain if he were to suck. This worked so well that within a couple of days Nicky was off the IV.

Now they wanted me to learn how to medicate his wounds and care for him in every way, so the following Monday night I spent it at the hospital in a room. The nurse instructed me how to care for him and I stayed in a regular hospital room with Nicky and my MIL for the entire night and the next morning. Nicky had a lot of gas during the night, hence a lot of stomach ache, so he cried a lot. At one point I took him out of the room with me and I started walking around the hospital while I talked to him about his daddy, his big brother, the cats that were anxious to meet him and everything else that came into my mind. Looked like my voice soothed him, so that is what I did to calm him down.
I will never forget one nurse's comment on "how well we were dealing with this". But after the experience with Alex, we were just happy we could hold a living baby, blisters or not. The dermatologist came back the following morning, he talked to us for a while and managed to really depress us. Over and over again he did not want to give us any hope for his survival. He told us that we would be in week after week to treat infections, if not worse, and totally painted an extremely bleak picture for us. Afterwards he took us step by step on how to care for his wounds taking extreme care in doing so.

Life with Nicky and EB has not been easy, especially for him. At first we were transformed into nurses, and knowing nothing about medicine there was much to learn, about medications and other occupational hazards... However, 'til this day, Nicky has never been in the hospital to treat any infections, as the dermatologist told us would happen, not to say he has never been on antibiotics, but always for "prevention" only. The parent of an EB baby cannot wear clothes that have buttons or anything that might cause a blister if rubbed against, cannot wear jewelry, including watches, and the nails have to be extremely short. The baby itself cannot wear anything that has too many buttons, or is harsh (like jeans), it needs to be soft and easy to put on with a large hole for his head to pass through without needing to do any pulling. Everything has to be padded, from the stroller to the bed, from the swing to the playpen, and everything you can think of, because anything harsh can and will Nicky 6 months produce either a blister or cause skin to peel off.

This was definitely a world I was not prepared to enter. I was catapulted into a world full of Drs, diagnoses, bandages and wounds. Nicky is such a precious, loving and special child. But it is incredibly painful to see his boo-boos, which can be quite extensive. So far the worse event has been when I accidentally stepped on his hand, degloving it. But other incidents, like the throwing up of blood, the almost constant skinless elbows and knees, and the surprise huge blisters, have all thrown me in despair. Everyday tasks, like a simple diaper change or just picking him up is a nightmare. Baths are awful. He cannot take a bath completely naked due to his many wounds, and when I take him out of the bath I cannot touch him with my fingertips because I have caused many blisters that way. I have to use my arms, and then I have to change all his dressings, some of which might be "attached" to the wound...blah!! Sometimes I don't even feel like a mom, I feel like I am a reluctant nurse. I don't want to see my baby in pain, I don't want to see his blood. It is very, very hard to put a face sometimes. Even if I did not cry as hard as I did with Alex, the pain has been there every single day, because it is every day that Nicky cries out in pain from a blister or a boo-boo. But he himself is the one that keeps me going. Always smiling, always laughing, always hugging. He is the most precious, loving boy. How I wish I could do simple things with him, like picking him up under the armpits, throwing him in the air, let him run around naked... the list goes on and on. I do believe that, one day, he will become an incredible person. Because he already is.
Truth be told, I learned so much from this little boy. He is so smart and will do things 'to help momma', he is so brave, he is such a special soul. My life has been enriched by his presence, and my greatest hope is that he will live to see a cure for this dratted disorder, and that he will be able to fulfill every heart's desire.

From time to time I have had people that make me feel like I am an absolutely awful person for being jealous of a healthy or healthier child. Good grief. "Here is another insensitive and clueless person", I think to myself, someone that cannot see past her nose. If only this person would see what I have to put my child through every day, she would KNOW that my being jealous has nothing to do with not loving my child. It has nothing to do with the fact that I do not accept his disability, or that I do not enjoy him. It has EVERYTHING to do with the fact that I am tired of him being in pain, and that his pain hurts me more than mere words can explain. Yet, I keep going, out of unconditional love, and yes, I am envious of parents that do not have to hurt their children. As long as my child is in pain, I will possibly always be. I am not sure why that is such a hard concept to explain, but, it is. Moms in my shoes, sure know what I am talking about. But, how do you explain, to the parent of a healthy child who just made you feel like a rotten person for being jealous, how it feels to feel so helpless? There are days I cannot stand his continuous crying. His eye hurts, his foot hurts, his elbow hurts, his butt hurts, he's tired, he cannot swallow this, he cannot swallow that, he chokes, he wakes up in the middle of the night and chokes saliva over and over again, etc. It is constant. There is no getting away from it. I yell at him if he whines too much, I am a single mom, so I never get a brake. I tend to really lose it if I am really tired and he is a tiny bit too demanding. What kind of monster am I turning into? And there he is, wanting and requesting great big hug every minute of every day. Nicky, 3, playing videogames Sometimes I feel like the biggest jerk that ever walked the earth. I'm mad at this disease, not him. I'm mad about the "normal" life my child does not have and will never have. I hate the thoughts of my son dying because of this disease. When he is sleeping the thought of how he will look when he dies enters my mind. I am not sure if it's because I know how dead children look like, since I already buried one, or if I am just morbid. One thing for certain, it scares the hell out of me. And I know it can happen, and I know it WILL happen if a cure is not found soon. How do you explain this to the parent of a healthy child? There are days where I feel I cannot see one more blister, one more sore area that won't heal. But, what do I do? Run away? I'm the mom, I can't leave. I am the only person this child has. I have to cope with this weather I like it or not. Everyone says, "I just don't know how you do this everyday." "You're such a great mom." "You are so strong." "He is lucky to have you." "God chose you for a reason." I don't know how I do it everyday. If I'm so great and Nicky is so lucky, why do I feel so helpless? Why was I chosen? Who knows. A mother is made to protect their child and be there when they are sick and have them get better. My son is not getting better. He is sick everyday and I cannot help him. I cannot make his pain better. I want to do it for him, but I can't. It just tears my heart apart. How can I possibly not feel jealous as my child fades and is in more and more pain. And even worse, I am the one that HAS to cause much of that pain, because if I don't - the consequences are unthinkable. I have to do the zombie thing and poke and cut and bathe, smear medicine on areas too sore to even expose to the air without hurting and bandage. This is against everything that is in the handbook of loving parenthood, of nurturing. Deliberately causing pain, even though there is no other choice. In a way, this is a lot like grieving for my Alex, because it is a death of what could have been.

The absolute worse part about Nicky having the Recessive Dystrophic form of EB is that I cannot look forward to him getting better... EVER. If anything, he's just going to go through more surgeries and more pain, with little hope for true normalcy or recovery. Yet it is very evident with these children, that their spirit soars high, and will try their best to be as normal as possible. Most EB kids are straight As students. Nicky, true to that, at 3, he could count to 20, spell his name, and knew the entire alphabet--even knowing words that start with those letters too. Most 5 year olds cannot do that. At 5 year old he had mastered several videogames that are difficult for adults and even 1st grade software. Nicky enjoys the little things other kids might very well take for granted, and his love for people that love him is pure gold. This is the children with EBs (and their parents) greatest gift, the chance to see the world with their eyes, because it is indeed a different and more special world than the one we live in. Yes, a world full of surgeries, hospital stays, g-tubes and Drs, but without a doubt, a more caring world.

I have found it interesting how people that are not parents but have EB themselves have always made me feel like I am a whiner and complainer. I was told that EBers will NEVER feel sorry for their parents because THEY are not the ones in pain. This comment only comes from EBers that are not parents, because EBers that are parents feel a heck of a lot different. Unfortunately many EBers can never be parents, so they will never understand the sacrifices of their parents. V Nicky's 4th birthday party ery sad, won't you say?

I have been able to work from home since Nicky's 4th birthday, and I have been told by other parents how 'lucky' I am... to that I have to say, it is no luck by any stretch of the imagination that I am able to work from home, and it was a fight I fought to the tooth and was 4 years in the making. When he was born I was forced to quit my job because no day care would take him. We were forced into bankruptcy. We lost everything. The house, the cars, credit, you name it, we lost it. We lost our marriage too, a couple of years down the road. Ever since Nicky was born I had been thinking of 'something' to do from home. The only thing I could think about at the time is graphics and web developing. So, in the next couple of years I bought books, visited websites, and self thought myself these crafts. Once the divorce was final I looked long and hard for home work to no avail. I did not know what to do, since no day care still would take Nicky. Then I got in touch with the DDD (dept. of developmental disabilities), which turned Nicky down twice because it did not fit into their 'categories', finally, after a fight I won their attention and Nicky started getting their services. One of their services was respite care. Pressed to find a job I took a position as a sales person for a local computer company. After 6 months of hinting, begging, and, basically, ass kissing (lol), they let me in on their 'web team', even though I had no formal training whatsoever, on a 60 day trial basis. I was so determined to do well, they kept me on. After an entire year of researching the possibilities to work from home for them, after being told 'no, it's not possible' a million times, they finally let me, but only while they were training my 'replacement'. They had basically fired me because I wanted to work from home. But, then, there was some major shake up at the company and they were not able to replace me, and the resources were no longer in place to train, so they changed their mind and let me work for them from home for some time. They told me this after they had actually fired me and I had worked my last day. I was able to work from home for 8 months and now I am working on doing a lot of little work here and there so I can still work from home since I have no choice, nobody will pay for respite and no day care will take him. I am now working on my wedding site, misc. web work, translation work and more...
Life is tough... but I am tougher.

...It is not a slight thing when they, who are so fresh from God, Love us.
-Charles Dickens

Navigate this kingdom with the transporter!