It’s an interesting thing, having your entire world turned upside down, and yet at the same time, remain exactly the same.

This has been a horrible and devastating, normal week. After Tuesday, we still got up way too early, listened to Veggie Tales way too many times, and drove way too many miles to and from school. We had therapy, cuddled a lot, and giggled and cried. Grayson was adorable and difficult. Normal.

Right after I called Ryan on Tuesday and broke the terrible news, I immediately took this picture and texted it to him. I just love this picture and can’t stop looking at it- how cute is my goofy toddler who had no idea he had just an hour before been given a crushing diagnosis?

My family has received so much support this week and we are so grateful. Your blog comments, FB messages, phone calls, texts and prayers have made this awful news perhaps a little more bearable. My mom took Wednesday off to spend the day with us, and when she returned to work yesterday her students spent the first few minutes of the day surrounding her in prayer. So many people around the world are praying and thinking about us and G and we feel so humbled and blessed.

At the same time, I feel distant and removed from it all. I just can’t wrap my brain around it. I read and reread all your comments and it feels like I’m reading them about someone else. I just can’t believe this really could be true. How can this be true? This can’t be happening to my family, to my baby. I can’t even imagine him not being with us forever. I think about him leaving us and I start to cry, but I cry because I think, wow, that would be really horrible if that happened- not when it happens. Is this the denial stage of grief?

I am seeing my counselor on Monday, and I want a plan. I don’t want to just sit on her couch and cry and feel sorry for myself- I can do that at home for free 🙂 I want her to help me find the best ways to go forward from here- to make the most of whatever time we have with Grayson- whether it be a year or many more.

I spent the day with one of my closest friends and we talked a little bit about making the most of the time we have and creating special moments and memories. She suggested doing a photo a day. This probably won’t be too hard, considering I take so many as it is, although I am NOT a photographer. But I did create a little photo op during bath time tonight- I was singing and Grayson was laughing, so I gave him a shampoo mohawk. I love being silly with my G-Man.

This weekend, we have plans to be normal. Ryan is coaching football, I’m working, and I’m taking Grayson to a birthday party for one of his buddies tomorrow. We’ll go to church, listen to a lot of Veggie Tales, and I’ll attempt to start organizing Grayson’s birthday party. And I’m hoping it doesn’t end this weekend- I’m hoping we can just be normal for long, long time.

On September 11, 2001 the world changed forever. Yesterday, September 11, 2012, my family’s world changed forever.

It was a beautiful, clear morning in Houston, not unlike what New Yorkers described eleven years ago before ugly black smoke filled the blue sky. I loaded Grayson in the car and headed to my parents’ house to pick up Hannah, my sister in law who had graciously agreed to go with us to G’s doctors appointment, which I had jokingly promised her would be an “adventure.”

We were seeing Grayson’s Mitochondrial Disease specialist, who you probably remember has been on maternity leave for several months. We had to discuss with her the results of the MRI, spinal tap and genetic testing. However, I have had copies of all of these and had even discussed the results with G’s neurologist. When Ryan asked if he should take off work and come with us to the appointment, I said no. I figured she would say basically the same things we’d heard before, but maybe with a little more clarity.

We talked to a med student, Grayson fussed, we changed his diaper- all “normal” things we do routinely at doctors appointments. Then the doctor came in, and the plane slammed into our building, although the doctor ended life as we knew it with kindness and gentleness. The news was devastating and shocking: Grayson has Leigh’s Disease.

Leigh’s Disease is a rare form of Mitochondrial Disease that is fatal. We do not know how long he will live, but Grayson will most likely not survive childhood.

In a second, I went from Special Needs Mom to Mom of Child with Terminal Illness. How am I supposed to process this? What I am supposed to do? A lot of real life people know the news already and are asking if we are ok and what they can do. No, we are not ok, and I have no idea what they can do. It’s just where I am right now.

Please know if you’ve called, emailed or texted and I haven’t responded it’s not because I don’t appreciate it or don’t want to talk to you- I’m just exhausted and emotionally overwhelmed right now. Bear with me- and know I am so grateful for your prayers and support.

I do know that we are more determined than ever to give Grayson the happiest life we can- however long or short it is. And this little guy certainly doesn’t know anything has changed. We just love him so, so much and will celebrate his life every day (and big time next Saturday when he turns TWO!).

Photos by Rebecca Kline Photography

I know you are tired of looking at pictures of my little boy asleep in his crib, but he’s just so sweet when he sleeps and I think it’s so funny how creative he gets with his bumpers every night- I just can’t resist sneaking into his room and snapping away. Also, I am breathing a huge sign of relief that this is where he is tonight. We (finally) made it through a school Friday without a medical crisis or major meltdown. Yay us!

We spent the night at my parents’ house last night (like we do every Thursday to cut down on miles/week I drive to school) and Grayson was so worn out from Brown Bear Brown Bear day at school (see his very first *assisted* school coloring project- humor me, I embrace anything “normal” he gets to do) that he slept 14 1/2 hours! I was so proud that we were actually going to be on time even though he woke up 45 minutes before school started but I powered through and got us in the car in time to get there. But by the time I closed the door on G’s side and opened my driver’s door, he and his carseat were COVERED in vomit. Sigh. Back in the house we went. Even so, we managed to only be 20 minutes late and I left him happy (read: not crying). Success!

When I picked him up at 3:00, he was sitting on his teacher’s lap intently listening/looking at a book on her ipad. She stood up and when he heard my voice he smiled, popped his thumb in his mouth and lay his head on his teacher’s shoulder. It was the sweetest thing, and made me so happy that he is getting comfortable at school.

*Thursday update: I had my OB appointment and ultrasound. My sister in law went with me, who had never seen a baby ultrasound, so that was a fun experience for both of us. We were walking out and I realized I forgot to ask for a picture- aaa! I do have my anatomy scan week after next, which will give me much better pictures anyway, so I’ll just post those when I get them. Anyway, baby looks great- was wiggling around which was great to see. We are not finding out the sex this time and my OB refused to look for herself- said she would have too hard of a time keeping the secret- ha!

**Wanted to share my “Counting my Blessings/Keeping things in Perspective” moment of the week. Wednesday morning Grayson was having a meltdown and his vision therapist was on her way, so I decided to take him for a walk to calm him down before she got there. It was a beautiful, clear morning and I looked up and saw this, right above our house:

There was another family out for a walk with a toddler about G’s age who was oohing and ahhing over the balloon as he pointed from his stroller. Grayson, of course could not see the balloon and had no idea it was there. Tears filled my eyes as I thought about how much he misses out on, visually. But then, the Whoosh of the burner filled the silence and Grayson startled, looking around for the source of the sound. He hears things. And I am so thankful for his hearing- yes, I get annoyed with his music sometimes, but grateful that he can experience a lot of the world with his ears, if not with his eyes.

Happy Friday everyone!

• So What if I’m disappointed I’m not doing my Wordless Wednesday I had planned- an ultrasound picture of Baby Baker…I was on my way to my appointment when I got a phone call that my doctor had to go to a delivery. Babies and their timing! I rescheduled for tomorrow, but Wordless Thursday just doesn’t have the same ring to it…
• So What if after I took a shower this morning, instead of getting ready, I fell asleep watching True Life: I’m Too Young for my Boyfriend. Oh, MTV.
• So What if after listening to it 600 times a day, I’m having violent thoughts about Veggie Tales. But at the same time I’m planning a Very Veggie Fiesta birthday party for Grayson.
• So What if Grayson’s birthday party preparations so far consist of me thinking about how I better start making preparations.
• So What if I cleaned out my pantry on Monday and I’m counting this as a major accomplishment in my life right now. Every time I open the pantry door it makes me smile.
• So What if this afternoon I made Energy Bites (sooo easy and sooo good) and have already eaten 3 of them
• So What if I am screening calls from the stupid maternity counseling thing I was offered through my insurance company. The calls are like 30 minutes and consist of a nurse asking me things like, “Do you use a bathmat when you get out of the shower so you won’t fall?” and “Do you have plenty of emotional support during this pregnancy?” Yes, and yes, now leave me alone.
• So What if my photographer-extraordinaire sister is in town and I really want her to get some shots of Grayson, but the thought of getting him to cooperate for pictures just makes me tired.
• So What if I will most likely be in bed (and also asleep) before 9:00 tonight.

After another difficult day (lots of puking and fussiness), G’s worn out body finally gave him some peace at bedtime. I just love watching him sleep, even when I question his positioning. Related: maybe it’s time to get him a pillow.

Thank you as always for all your kind, encouraging comments on yesterday’s post. Yes, this is so hard; yes, I love him SO much; and yes, it’s absolutely worth it.

Tonight, I’m exhausted and feeling pretty defeated. I really try not to dwell on the negatives of our particular situation, but I also want to be transparent and admit that sometimes a lot of the time life with Grayson is really hard. The day to day challenges as well as the fear of what his future will be like are difficult to deal with, and sometimes just seem to beat me down temporarily.

Poor Grayson has had a pretty rough go the last few days. After his seizures last Friday, we saw his neurologist for the results of his EEG, which was more abnormal than his last one, 10 months ago. This is discouraging because it’s more evidence that his brain issues are getting worse. Dr. R upped his seizure meds dose again.

The main reason we had the appointment was to get G’s Botox injections. He got 4 injections, 1 in each leg for stiffness and 1 on each side of his neck to try and get his excessive drooling under control. Grayson was already crying before the injections, and of then of course they made him hysterical. It was awful, but we made it. So far I have not seen any difference/improvement.

Wednesday, Grayson had PT and screamed throughout the entire session. We couldn’t do a thing with him because he was so upset. The only thing that calmed him was his swing, which has a 25 pound limit. G is 24 pounds. I am seriously panicking inside about the day where he can’t use the swing anymore.

Thursday was a really great day.  Grayson went to school and had a good day. The news that he LOVED music therapy (they said he laughed during the session and got to “play” an instrument) was about the highlight of my week. I also spent the day with my friend and her kiddos, and had my monthly Mito Moms dinner that night which was great.

Friday morning Grayson woke up irritable and fussy and then fell asleep 15 minutes before we were supposed to leave for school. By the time I got him there, we were late and Grayson started up with the crying again. I could not get him to stop crying and it just escalated into hysterics no matter what I did. I couldn’t leave him like that so I put him back in the car and took him to Target for a little while. When we got back to school he was still fussy, but I was able to leave him and his teacher said he had an ok day.

My sister in law Hannah and I picked him up from school a little early and we drove 3 hours to my parents’ new “ranch”. They bought a gorgeous property a few months ago in East Texas that is 39 acres and has a house and a guest house. This was the first weekend that some of our family was going to stay and G and I were supposed to stay until tomorrow. Ryan had to work this weekend, so he couldn’t come. My mom had bought G a pack n play, an excersaucer, play gym and some toys, so he should have felt right at home.

I don’t know why I think traveling anywhere with Grayson is going to be different than it always is. He does NOT deal well with change and new environments. It’s like his brain just can’t handle it. Grayson did 2 things this weekend: cried, and laid on the floor and listened to Veggie Tales. Lots and lots of crying. Saturday morning he woke up hysterical at 6:00 and didn’t stop crying until 8:30. I was so worried he was going to cause himself to have another seizure. THANK GOD for the weighted blanket– several times it was the only thing that calmed him down.

Last night he woke up all night crying, but thankfully slept until 7 am. But then the crying had started again as well as vomiting- he threw up 5 times before 10 am and obviously did not feel well at all. We decided to head back to Houston with my brother and SIL, who were coming back today anyway. Grayson was SO happy to get home, and even happier to see his Daddy- he just laughed and laughed while Ryan played with him.

It’s just NOT FAIR that we can’t take our almost 2 year old for a weekend away without him melting down for 2 days straight. I should be exhausted because of chasing him as he explored and had adventures outside instead of rocking his stiff little body like a 3 month old baby. I hate admitting that all this upsets me, but it does. I want him to have happy childhood experiences and not be housebound all the time, but after this weekend, I’m not sure how to accomplish that for him.

Thankfully, G is sleeping soundly and hopefully will stay asleep in his comfortable, familiar bed so we can all get some much needed rest tonight. I definitely need a battery recharge!

So I guess Grayson thought it was lame that we had no Friday plans and decided to mix things up.

We got home from school yesterday and I put him in his excersaucer and turned on his music. A few minutes later, he was slumped over and zoned out. I thought he was just exhausted from his day and took his picture, actually planning to post it on Facebook.

I did a few things around the house, and when I went back in to check on him, his head was buried in the excersaucer and he was making a noise- I thought he had fallen asleep and was snoring. I went to take another picture and realized he was seizing. This seizure was unlike any he’s had before- it was more like the “Hollywood” version- convulsing, foaming at the mouth, non responsive, and wet, clammy skin.

By the time the ambulance got here, the first seizure had ended, I put him in his swing, but a few minutes later a second one began. The paramedics laid him on his side on the floor, put an oxygen mask on him and he immediately started vomiting everywhere. They had me administer his emergency rectal gel that we have on hand for seizures lasting more than 5 minutes (we’ve never had to use it before).

The ambulance rushed us to the hospital with sirens and lights, and fortunately, he was stabilized by the time we got there. Ryan met us there, along with his mom, sister and niece. My amazing friend J brought diapers and snacks, because I was so frazzled when we left the house that I forgot to grab the diaper bag. Ryan’s sister went and got me dinner, and we waited. They put in an IV and took blood, and Grayson didn’t cry at all- he was so out of it. He had a CAT scan that came back abnormal- they compared it to the last CAT scan he had a year ago, the night of his first seizure. The two scan scans were very different- not good.

Because of the nature of the seizures, the CAT scan, and Grayson’s Mitochondrial disease, we were transferred downtown by ambulance a few hours later. My brother and his wife met us at that hospital. By the time we got to sleep, I had told his entire medical history (not just what happened yesterday) 4 times. Seriously, why can’t these interns, residents and attendings just talk to each other? It’s so annoying.

I love how the transfer nurse wrote the name of G’s seizure med on his hand- ha!

We were told we would see neurology first thing in the morning and to expect that they would order and EEG and possibly an MRI. Remember Grayson just had an EEG on Wednesday? And he HATES them? So we both went to sleep- G in the cage-like hospital crib and me on the oh-so-comfy “couch”- way less fun when you’re pregnant, let me tell ya.

They were right- a neurology intern came in about 7:15 am- waking G and I up. I won’t complain though, because this was way better than waiting for hours to see a doctor. About 30 minutes later, the entire team came in. The attending neurologist was great- listened carefully to me and answered all my questions. Since we really haven’t ever had Grayson’s MRI results from May discussed with us by a doctor (because our doctor has been on maternity leave), he pulled up the scans on the computer and gave us a detailed explanation. He was also teaching the med students who were with him, so it was a whole “lesson” on our little dude’s brain.

Grayson’s brain is not normal. The doctor explained that due to the abnormalities, his epilepsy is not surprising and expected. He has a very thin corpus collosum, and white matter volume loss. He pointed out on the scans large black areas that should be white. He doesn’t have nearly enough white matter in his brain that would be appropriate for his age. This is why G cannot sit up, crawl, walk, or talk. His brain doesn’t allow his body to do those things. We don’t know whether or not this will get better, stay the same, or get worse.

The doctor surprisingly did not think we needed an EEG today- hallelujah! We see G’s regular neurologist on Tuesday for his Botox injections and will discuss all this with him. The hospital doctor said the seizures yesterday were most likely triggered by the new schedule and increased activity at school. He did say school is very good though, because the new experiences and stimulation will help his brain develop.

We were discharged this morning about 10:30 am, went for Mexican food to celebrate a short hospital stay (G ate a few bites of guacamole!) and went home. And then Grayson proceeded to take a 4 hour nap- poor worn out baby. He woke up happy, played for a few hours, then went right back to sleep at bedtime.

Other than being exhausted, Grayson is back to normal- he was actually in a great mood all day. Hopefully this little incident was just a bump in the road and we can move on and have a great second week of school next week!

Dear Grayson,
Happy 23 months- in one month you will be the Birthday Boy again! I really can’t believe I’m going to have a TWO year old in about 30 days!

You have had a good month. Thankfully, you are sleeping much better than you were last month. You are still waking up once or twice in the early morning hours, and usually your daddy goes in your room and sings to you- it’s so sweet. He always tells you you need to go back to sleep for 3 more hours, and usually you obey him.

Today, we had a rough afternoon. You had an EEG to check for seizures. Each time we do one it gets harder and harder- today you screamed hysterically while the tech put the wires on your head. You fell asleep briefly but were awake and annoyed most of the test. I can’t say I blame you, but it would have been easier on both of us if you had just gone to sleep. I know you hate it, but you do make a pretty cute mummy!

Your second day of school is tomorrow and you have your speech therapy evalulation in the morning. The therapist said to bring your favorite food so she can see you eat. I wonder if I can get Mexican food before 9 am?

I love you so much sweet boy and am looking foward to soaking up every minute of the last month of your second year.

Love,
Mommy

Grayson has had a tough couple of months- his body just won’t relax. He’s really stiff, and there’s the ever-present frustration that his body won’t let him do what he wants it to. I also mentioned before that sleep has been a major issue for us, and I asked for advice on things that may help.

My friend Lisa strongly encouraged me to get Grayson a weighted blanket from SensaCalm. She says:

SensaCalm blankets are a miracle. My son has Autism and struggles with many sensory issues. When the blanket arrived, we immediately put it on him and he was instantly calmed. He had the biggest smile on his face! We use the blanket all the time. My son will now go find it and carry it around with him to bed, to watch tv, to the car, etc. It is such a wonderful feeling to know that he has something to calm him in any and all situations.

My mom generously ordered Grayson one of these blankets a few weeks ago. They are weighted according to the age and size of the child and the company has lots of fabrics and colors to choose from.

Yesterday morning, Grayson woke up WAY too early and was obviously still really tired. Despite this, he wouldn’t go back to sleep and even when I brought him in the living room and turned on his music, he was fidgety and fussy. I put the blanket on him, and he INSTANTLY became calm and very still. This was how he stayed for the next hour and a half! Although he didn’t go back to sleep, the blanket gave his body some much-needed rest.

Later that same afternoon, when Grayson got fussy, I put the blanket on him again, and within minutes he was asleep, and stayed asleep for an hour.

So far, using the weighted blanket in the crib hasn’t worked out as well as I had hoped. I don’t know if it’s because Grayson has never slept with a blanket and just isn’t used to it, or if it’s too bulky and hot, but he wiggles out of it and pushes it with his feet to the end of the crib. However, he has been falling asleep MUCH more quickly and easily the past few nights (no idea why, but I’ll take it!) so him not using the blanket at night hasn’t been an issue.

Most families that order weighted blankets for their children have Autism or Sensory Processing Disorder (which I suspect G has) but SensaCalm’s website lists many other conditions that their blankets could benefit such as anxiety, tantrums and even Restless Leg Syndrome, which I suffer from. I’m going to have to try out Grayson’s blanket on my legs!

I highly recommend a SensaCalm or other weighted blanket to anyone with a child who has sensory issues, or even if they don’t and want something calming to help them relax. So far, it’s been a miracle product for us after just a few days!

Note: I was not contacted about or compensated by SensaCalm for writing this post. I just think they make a great product and wanted to share something that working for us!