Monday, January 24, 2011

Definitely not what I imagined it to be...

Motherhood, that is...

I knew I wanted to be a mommy since I was at least 7 yrs old. I loved helping to take care of my younger brother. When my older brother left elementary school for middle school, it left me in charge and I was so proud of that!. I started babysitting at 9 yrs old (with mom home) and had my very first official babysitting job when I turned 12 yrs old. Actually, I had TWO of them. I watched 2 little kids, who lived down the street from our house, after school each day and I babysat 2 little ones on the weekends. I LOVED being the caregiver. I couldn't wait to have kids of my own someday (when I was old enough of course!!).

When I imagined what motherhood would be like, I imagined myself and my child singing and dancing together. Reading stories together. Me teaching my baby the alphabet and how to count to 10 in both english and spanish. Going to the park. Weekend trips to the zoo, maybe even on the public transportation bus like me and my grandmother used to do. Going to playgroups. Fieldtrips. Days filled with laughter and smiles.

Jayden and I have done ALL OF THE ABOVE. However, every single one of those things have proven to be difficult for him, and in turn, for me. He doesn't enjoy being sang to. He's finally to a point where I can read a really short story to him, but only on certain days and those days are few and far in between. I did teach my baby the alphabet...he forgot them...he regressed. That definitely wasn't a part of my fantasy. It's hard to go to parks anymore b/c he cannot tolerate the sun, even if it's cold out. The zoo is just a sensory overload nightmare for him. We gave up on playgroups b/c he never fit in and the local playgroup here definitely wasn't as understanding to his behaviors as our beloved playgroup back in MS. We avoid fieldtrips for the same reason we have to avoid the zoo...sensory overload. We DEFINITELY have days filled with laughter and smiles, but we also have our fair share of days filled with sadness, fear, tears and dispair :( That certainly wasn't a part of my childhood fantasy.

Am I sad that it's not exactly the way I expected it to be? Yes.

Would I change anything if I could? Heck yeah! I'd give anything to end my baby's suffering and constant struggle to try and fit in to a world where things just make no sense to him.

Am I envious of the parents who paint this perfect picture of what motherhood in their home is like? Yes, I do. Facebook makes this incredibly hard for me b/c I have several mom friends who brag and boast on how wonderful their kids are. On bad days, this hurts the most.

Am I angry at God for putting us in this situation, after years of battling infertility and praying for a child? No.

Actually, I am grateful. The devil clouds my mind at times and I often catch myself thinking, "Why me Lord?" "Why us?" Then I am reminded that He chose us because we CAN. I wanted a picture perfect motherhood. Jayden needed two strong, devoted parents. God had a plan. It didn't match my fantasy at all. But He knows us better than we know ourselves. Had you asked me, before I became a parent, what I would do if I found out that my child had celiac disease, a chromosome deletion, epilepsy, autistic behaviors, and a host of sensory issues I would have said "There is no way in HELL I could handle that! I just couldn't do it." Heck, you would have lost me at Celiac disease b/c before Jayden, anything that ended with disease was just too much for me to handle.

As I sit here in this hospital tonight, watching my little boy with electrodes protruding from his head while he sits in the hospital bed playing with his action figures, I think of how far I've come. I went from fantasizing about running through fields playing catch, smiling ear to ear, to not even flinching when I tell someone that my child has a disease. Or that he's lethargic and clammy b/c he just had a seizure. Or that he cannot hold a conversation with them just yet b/c he is delayed due to a genetic disorder. It's my life. And I am handling it, even though I would have never believed I could handle something of this extent. Don't be fooled. I have my fair share of bad days. Some days I stay in bed and cry all day. Several nights I don't sleep a wink b/c I'm too busy worrying about my baby's future. Some days I raise my voice more than I'd like to. Many days, I worry too much about what other people think. But in the end, I am succeeding at one thing, and that's being a good mommy to him no matter what.

Sometimes I think to myself "What if motherhood would have been exactly as I'd imagined it to be?", then I realize just how ignorant I would be. I wouldn't understand why any one would want a break from their child. I'd continue to judge those parents in WalMart whose kids pitch fits over the simplest things. I wouldn't have a clue about sensory needs (most kids DO have sensory issues and many parents just overlook them b/c they have no idea). Had motherhood been exactly what I'd imagined it to be, I would take a lot of days with Jayden for granted. Jayden has taught us to celebrate EVERDAY. Not just once a year. We celebrate every single day. We celebrate the smallest of victories like remembering one of those alphabets that he forgot. Or finally being able to CLEARLY say a word that he'd been struggling with. We even celebrate him pointing to a picture and using a sentence to tell what's going on in that picture. At 4 yrs old, people don't understand why we get so excited about things like that but that's their loss. Something they take for granted b/c they have yet to meet a child like our Jayden. What he has taught us is worth more than any perfect picture of motherhood. But there is one thing about my fantasized motherhood that is exactly how I imagined it and maybe even more...just how much he has filled my heart with love. And my UNCONDITIONAL love for him! Thank you, God, for trusting me with one of your most prized angels!!

Thursday, January 20, 2011


I'm having a hard time lately. What it is is that I'm torn between wanting to protect him with my instinct yet not wanting to OVER protect him. I want him to be able to lead as normal a life as possible, despite his disabilities. But the mama in me will not allow me to release my grasp on him b/c I know that he depends on me to take care of him.

I can usually tell when Jayden is going to have a seizure from the very moment that he wakes up. Sometimes it could be the color of his skin (it would just look dull and unhealthy). Other times it could be the look in his eyes. Or sometimes, he's just very whiny and clingy and yawns a lot. Last week, we got him dressed for school and he was whiny and clingy and his eyes looked a bit droopy. I contemplated keeping him home. However, he was walking and talking just fine so I felt like I was just being over protective. Besides, we had some errands to run in New Orleans while he was at school. So we dropped him off and he went into the cafe with no fight. 45 minutes later (we were already in New Orleans, 30 minutes away from his school) my phone rang. I told my husband, "I bet that's Jayden's teacher." Sure enough, it was. And he'd had a seizure. We immediately got on the road to go and pick him up. He was still out of it when we got there and then slept for 5 hours when he got home. I was so upset with myself for sending him when I knew that he wasn't ok that morning.

Well, this morning I questioned bringing him. His skin looked fine, his eyes were fine. He was only slightly whiny. But he was taking very small steps and just not really "with it" this morning. I asked him if he was okay and he said yes. I contemplated keeping him home. But then I had to rethink that because he missed school yesterday to go to the Dr. So, after him making me chase him through the house to put on his jacket (and he laughed the entire time!), we got in the truck and headed to school. He's been there for over an hour now and still no phone call, so that's a great thing.

But how do I handle this. How do I keep my mom instinct from sheltering him. And then how do I overcome the guilt when I ignore that instinct and then something goes wrong?? UGH.

Tuesday, January 18, 2011

Prayers for Jayden please

As you know, Jayden's been going through an extremely long weaning process to get him off of 3 different medications that are not working for him and on to one single medication. First, we started by weaning him on to the one medication he will be taking (if it works for him). He had been doing well with the weaning. A few behavior issues here and there, but no bad issues like increased seizures. I think he's had 2 seizures since the 4th.

Anyway, I've been keeping a daily journal during the process. We increased his dose of the Zonegran on the night of the 15th. Yesterday, the 17th, I went to update his journal for the day and when I was logging his behaviors I noticed there was nothing to report for that day b/c he didn't really do much but lounge around. Of course I won't complain about that b/c we all need that time to regroup! However, he took a really short nap and had a very hard time falling asleep last night. Then this morning, he slept in until 10:10 (he had usually been waking up at 7:30 each morning). I peeked in on him a few times b/c I get really nervous when he sleeps late. At 10:10, he woke up and called for me. I climbed in bed with him and we laid there snuggling and hiding under his covers "from the monsters". Then he said something that I couldn't understand so I asked him to say it again. He struggled to find the words (which he usually doesn't do) and then said "I have to pee pee." I really was not worried about him at all at this point. It was still just a typical morning for us, just with a late start. After he went to the bathroom we went downstairs and I gave him his medicine and he sat at the table and was waiting for his late breakfast/lunch. While I was fixing his sandwich he had a dazed look to his face and he kept asking me for his "mama". Just for reference, he does not call me mama. He calls me mommy. And I know that kids "grow up" and start saying mama b/c it's cooler ;) but this wasn't the case. He wasn't asking for me b/c I was right there and he was still pointing across the room for something else called "mama". I kept asking him what did he mean and he would just repeat "I want MAMA!" and he was getting very upset b/c I didn't understand. My husband came downstairs and Jayden said "Daddy, I want mama." My husband told him, "Your mama is right there." He started crying "No I want mama!" and pointed to our room. My husband took his hand and told Jayden to show him what it is he wanted. We haven't had to do that with him since he was 2 yrs old :( So he led my husband to our bedroom, over to my side of the bed, and pulled back the sheets. Then he said "Mama's gone!" Mike came back in the kitchen and said, "Nia, I think he didn't know who you were for a second." We asked him where is mommy and he got a little frustrated but soon enough, he pointed to me. It hurt my feelings a little but I figured he was just still very tired or something. Well after he ate he continued to talk but much of what he said made no sense. It's hard to explain, but he wasn't babbling which he does a lot when he's playing with toys. He was actually holding conversation with me, but none of it made any sense. He called the front door a "baba". Then, after 2 hours of being awake, he fell asleep on the couch. I didn't want to over react, but I sent a quick email to the Dr (I'm so grateful that she gave me the ability to be able to reach her) with my concern. She immediately emailed me back and told me to bring him in tomorrow morning.

My guess is that he's having a different type of seizure that is making him very tired and confused. I'm definitely ready for him to be well and catch a break! Please keep him in your prayers!

Wednesday, January 12, 2011

Just because I never want to forget it...

I've been working part time at our gym since November and on the nights that I work, I don't get off until 8 or 8:30. Usually when I get home, Jayden is just getting out of the bathtub (we let him stay up a bit later when I work so that I can still say prayers with him and tuck him in) and he comes downstairs to see me. Well last night I worked and his daddy wanted to work out so Jayden ended up in childcare at the gym while I was working. I wasn't in the childcare room, though, I was with the infants. But he was able to see me, talk to me, and kiss me over the half wall. When Mike came to get him, he asked to listen to "dancing" which is what he calls the MP3 player. So he was so preoccupied with listening and dancing that he forgot to tell me goodbye and didn't hear me when I yelled goodbye to him. So I think that is what warranted the dramatic welcome home I got from him when I made it home.

I came in and I heard him getting out of the tub and saying "Mommy? Mommy home? Mommy?" He came down the stairs, smelling fresh and looking so cute in some new pjs. He looked at me and his entire face lit up and he yelled "Mooooo mmmeeeeeeeee!!" Then he took off running, all the while shouting "Mommy Mommy Mommy Mommy!!" straight into my arms!! I picked him up and he started kissing me all over my face and hugging me. WOW!! I loved every minute!! Then he just hugged on me and smiled :) So glad that even at the age of 4, he is still a mommy's boy!

A quick update on his health: He had a little bit of seizure activity on Sunday morning but nothing major. However, he had a pretty bad one at school today and he slept for half the day. Once he woke up he was fine. He will be admitted to the hospital on the 24th for his video EEG and we will go from there.

Tuesday, January 4, 2011

Appointment with new neurologist

So, finally, after exactly 2 LONG months of having no neurologist at all for Jayden, he had his appointment with the new one over at Children's hospital. Of course, it wasn't smooth sailing, although I'm beginning to believe it's some sort of Johnson family omen. Or perhaps the devil trying to see just how hard I am willing to fight for my son. Long story short, Jayden's Tricare referral got lost in the shuffle of paperwork and daily faxes. New Orleans is very low on pediatric neurologists so the offices are jam packed. That's when you have to depend on those computer systems. However, in order to depend on one, you gotta know how to USE one! The receptionist at the neurology clinic asked me to call the general pedi to get it faxed over. The nurse over at the pedi's office couldn't locate the referral for the Dr we were scheduled to see. Instead of returning my call, she just didn't do anything. I called twice and the receptionist called the 3rd time. Still no referral. The neuro nurse called and the nurse at the pediatrician's office told her that we didn't have a referral to see Dr. C, it was for another Dr. So the nurse came out and told us that we were scheduled to see the wrong Dr and that we'd have to see Dr. M next week. Oh hell no!! See, we were scheduled all along to see Dr. M this morning at 10am. When Jayden was discharged from the hospital last week, we rec'd a call from the clinic stating that we should not come to the appt to see Dr. M at 10 and instead take him to the Metairie clinic to see Dr. C at 2pm. I immediately called the general pediatrician's office to check on the referral and she checked the system and saw that he did indeed have a referral to see Dr. C and she faxed it over that same day. That's the referral that was lost somewhere. So I pitched a fit. How dare they even think of sending us home to wait ANOTHER 7 DAYS to get my son seen b/c of a mistake someone in their office made. I understand that the nurse and the office manager's hands were tied, but unfortunately, they had to be a sounding board. I actually had to just say "Let me walk out of here before I go to jail." b/c I seriously felt like punching something. I snatched my cell phone and called the pediatrician's office and demanded to speak to the nurse. The receptionist said she could take a message but I said "No. I've left 3 messages and now the neurologist is about to cancel my child's appointment. I need the nurse on the phone now." I was put on hold for about 3 minutes and then the receptionist comes back on the phone and says she has a referral for Dr M. I said, he also has another referral which is for Dr. C. She goes through it again and says she sees one for Dr. A. No, that's the Dr who we are no longer seeing. She looked again and said "OH!! HERE IT IS!" OMG. I headed back inside and asked that receptionist to grab the nurse and they hounded the fax machine and finally, at 3:45 (his appointment was scheduled for 2), the referral came through. Lord...

So, anyway, I walked in there feeling bad about the way I had to act in order to get him seen, but hey at least he was finally being seen. And the best thing about it all...Dr. C was totally worth the wait. Yeah, I know I could possibly be jumping the gun, but I had a bad taste in my mouth for the previous neurologist from the very first visit and less than a week later we were looking for a new neurologist. Dr. C apologized for the referral issue and went to work getting Jayden's history and the names of the medications that he has tried and the ones that didn't work for him at all. The Dr told us that there are still several medications available that we can try him on (which was a relief b/c the last Dr told us that his chances of having his seizures medically controlled were slim...ugh)and we still have several options before having to pursue surgical options. She wants him to have a 24 hour video EEG done soon. She's adjusting his medication and going to attempt to eliminate the ones that he's taking that are simply not helping at all. We discussed the benefits of a vagus nerve stimulator so that we will know that it's definitely an option for Jayden should the medications not work for him. She told us "We are not going to give up on him. We will stop the seizures or work on reducing the frequency b/c it CAN be done, we just have to figure out how."

Before we left, she gave me her PERSONAL email address b/c she simply does not rely 100% on her office staff b/c they are not 100% reliable (example #1, the referral.) She wants me to keep in touch with her via email while he's weaning on to the new medication and to keep her posted on any abnormal reactions. She told me that her emails go straight to her phone and she checks it often. That is so very reassuring to me, you have no idea. She recently completed her residency over at Tulane so she worked with Dr. Nelson (our 1st WONDERFUL neurologist who relocated) and his wonderful nurse Marc and she mentioned how much she misses Marc b/c he was an excellent nurse. To which I agreed! I still call Marc when our backs are up against the wall and even though Jayden isn't his patient anymore, he does what he can to help! I told her I believe Marc spoiled the both of us, lol! Before we left, I apologized to the nurse once again about getting so upset in the waiting room and both she and the Dr chimed in and said "Oh don't be sorry!! That's your son and you are going to fight for him no matter what. We understand." Thank you Lord. I needed to hear that SOMEONE understands b/c for 4 long months we dealt with a Dr that simply did not understand and didn't care to try and understand. I'm so glad we are starting the new year with a new Dr and a new outlook.