How Great Thou Art

I have done a lot of reflecting this week. A friend of ours from our old ward in San Diego lost their little boy to cancer. Whenever someone loses a child I can't help but think about our experiences with losing one also. I feel for them, as the memories of those hours and days after saying goodbye to our boy come flooding back to the front of my mind. This time though, I also felt oddly jealous. I remember right after we lost D3 how much pain there was, but I also remember what a spiritual experience it was. Heaven was opened to me in a way that it never has been before. My heart was so broken that there was not an ounce of pride left in me and I so perfectly understood the plan of salvation and my role in it. The Atonement felt more real to me then ever, and I could literally feel Christ's love around me as if it was a tangible thing holding me up and keeping me safe. I was offered glimpses of Eternity that I will hold close for the rest of my life. Over time that spiritual bubble I was living in faded a bit. Regular life resumed. I still remember everything I learned, but the veil between Heaven and Earth isn't quite as thin as I think Heavenly Father was allowing it to be during that time. Despite the deep, intense pain I was feeling, I sometimes miss that spiritual bubble. Because in the middle of the pain and sorrow, I also had the most moments of pure peace I have ever experienced.

Today while getting ready for church, my thoughts were still on these friends and what they might be feeling at this time. I have been praying for them since I found out about their sweet boy's passing to be able to have those same types of amazing spiritual experiences that I did and to just feel how deeply loved they are.  During church we sang "How Great Thou Art" as an opening song. When it got to the last verse where it says, " When Christ shall come, with shouts of acclamation, and take me home, what joy shall fill my heart. Then I shall bow, in humble adoration, and there proclaim, 'My God How Great Thou Art'" I could hardly hold the tears back. I can't wait for the joy that will fill my heart when I see my little boy again. And I know that this family will get to hold their precious boy again too. I am thankful that Heavenly Father continues to offer me tender mercies and will confirm to my heart again no matter how many times he has before that all is not lost, my family will be made whole, and I will get to cradle my precious little one in my arms again some day.

Month of the Military Child

April was Month of the Military Child (and a million other things I am sure). Our base had little activities for the kids and one large fair type of event.

We discovered Jax loves ponies. All of the other kids his age were terrified of them. They were crying or they wouldn't even get on, but Jax loved it! We will probably be finding somewhere to ride horses for his birthday because he thought it was so fun. We got in line twice to do it because it was his favorite part. We might be looking into Equine Therapy for him since he really did love the horses.

They also had a little petting zoo. Good thing my mom (Nanna Tanna) was visiting because Im not really an animal person so I got to stay outside the petting area and take the pictures while she was inside with Jax.

It was a really fun afternoon for us and we didn't even have to leave base to get there, which was the best part. We will miss all of the fun stuff like this when we move in a couple months. 

All About Jax

I've had a few people asking me about Jax lately, and I am struggling giving the update over and over so I just decided to post an update here.  We seem to have the seizures under control with medication for now. Unfortunately, seizure medication is known for eroding teeth so he has to go to the dentist every couple months for a cleaning, but that is the only side affect for him so far, so we are very grateful for that.

Jax has multiple therapies a week (phyiscal, occupational, speech and feeding all with multiple sessions per week) which keeps me pretty busy. Last week he had check ups with all his doctors also, and will be receiving another EEG soon along with an MRI because the last one didn't show enough. He has to be fully sedated for these scans so that is stressful. His developmental pediatrician completed his usual assessment and updated his diagnosis from Global Developmental Delay due to epilepsy to a Communication Disorder due to epilepsy. We kind of figured this was coming because his Occupational Therapist as well as his Physical Therapist have been telling us that he will probably be able to drop those therapies by the time we move (in 2 months) because he is very close to catching up in those areas. When I inquired further about what exactly a communication disorder means and what Jax's future might look like, I was basically told that he will always have trouble with speech, reading and writing (common among children who have epilepsy) and unless a miracle occurs he will probably not be going to college. He then tried to smooth it over and say sometimes for no reason (aka a miracle) kids catch up and do perfectly fine the rest of their lives, but its not very likely especially since his speech score actually went down from the last time we saw his developmental pediatrician 3 months ago.  I asked if we were really diligent about getting really good therapy for him if that will help him be able to be in regular classes in school and he said "well we never really know if therapy actually helps kids or not". I kind of wondered what would happen if he said that in a room full of therapists.

I don't know if its that we have the seizures under control, or if it is the therapy, but these last 7-8 months Jax has really come out of his shell. What is most frustrating is that he scores really high on problem solving skills, so he is very smart, he just can't communicate that. Sometimes we have tantrum moments where he knows what he wants but he can't tell us and we don't understand him. That is hard for me. I want so badly to just be able to talk with my little boy. We have taught him several signs (American Sign Language) and that has helped some, but he has very few words. He still has not said mama or mom with any sort of meaning behind it, though he can point to me when asked "where is mama?", or "who is mom?". While he does not have autism, I now understand what those moms mean when they say their little one is trapped inside. Sometimes I feel like Jax is trapped inside himself. He wants so bad to tell us what he wants and needs, but he just cant.  We will be continuing with speech therapy for the foreseeable future (even though the doctor claims it doesn't help anything), even if that means we eventually give up on words and go strictly to ASL for him.

The night after the doctor visit I didn't sleep very well. It finally hit me really late at night that Jax probably won't have the kind of future I imagined for him. I am not sure right now if this means he will live with us his whole life, or if he will be able to live on his own maybe with some assistance. Or maybe he will just have a life in a job where he works with his hands and doesn't need to do a lot of communicating. Of course I believe in miracles, but I also know that miracles aren't always as they seem. I prayed for my first baby to miraculously live, and I never saw that miracle. But even though that particular miracle didn't happen, I can see that so many other miracles happened, even if it wasn't exactly the one I was praying for. I also know now to pray for the miracles we need, not the ones we want. I know Jax was sent to us to show us miracles. And it might not ever be that he miraculously is able to communicate with no problems, but there will be others, of this I am sure.  He has already brought so much light and love into our lives, and we are so thankful he is part of our family.

**Update** even though the doctor does not think therapy is very helpful, we have started looking into specialized elementary schools for Jax that deal specifically with children that have the same type of communication disorder that Jax does. These schools have amazing success rates of children that are able to transition to regular school by high school and almost all of them end up attending college. Tuition for these is about $20,000 per year (side note-that is more than all 4 years of my college education, ouch!). We have pretty much been agreement that doing the full 20 years and retiring from the military was in the cards for us, but with this type of cost for schooling we aren't sure if that will be possible since military pay is definitely not that grand. We have started to consider other job options etc because we want to give Jax every chance possible to have success in life.

Colonial Williamsburg

We will be leaving DC in 2 1/2 months. As is part of military life, we have a new assignment that will take us elsewhere. So we are trying to fit in as much stuff as we can while we are still here. We were pretty busy with babies the past 3 years so we haven't done as much as we had hoped when we originally set out on our journey here, baby free. So we are trying to make up for it now. We had heard that Colonial Williamsburg was a fun place to visit. It is about 2 1/2 hours from where we live but I told David we could stop at Sonic (the closest one is an hour away) and he was on board. So easy to convince men to do things-just involve food and they are down. So we loaded up the babies and we were off…

Quantico was on the way so we stopped to see Big Brother. We brought some blue hydrangeas because they remind me of him. Right after D3 died we got lots of flowers, but the very first ones were a potted plant of blue hydrangeas, and they were the ones that were around the longest. I nursed them right up until Christmas. When we buy a house some day my garden will be full of blue hydrangeas.

I feel like Rory still knows her big brother. She does little things that let me know she was very close to him not too long ago. 

After a stop at Sonic we continued on to Williamsburg. We were told by friends the tours are not very kid friendly, so we mostly just walked around and saw the buildings, watched some reenactments, and took some pictures. It was a pretty hot day so good thing we remembered the sunscreen.

Jax loved the horse. He said "oh wow!"

Again, watching the horses. He loves them. He obviously does not know my background with horses.  I don't do horses. So afraid. Not lying. 

This house is still currently used as a VIP welcoming place for the college of William and Mary. Overall it was a fun day. We got out of the house, learned some history, got to see our babe, and checked off one more thing on our list of things to see before we leave.