Glad thats over

Our driver picked us up at 12:45 yesterday to take us to the hospital and Liam was already sedated and getting his stem cells extracted by 2:00.  We were in a different area of the hospital than when we were here last time and it felt much more like a typical US hospital set up. Last year our room had a thick bed comforter and a wooden armoire and couch so this set up started out feeling like much more sanitary.

The extraction was done literally on the other side of a glass partition from our room. It was clouded so I couldn't completely see but it was comforting knowing he was within reach.

Last time when they did the extraction I didn't see Liam again until it was time for the infusion. This time Liam was brought back to me, pleasantly sedated on propofol, and he slept for most of the next two hours while they processed his stem cells. Again, it was nice to have him with me right there while we waited.

Once the cells were ready they took Liam right next door through another clouded door where they got him all set up in the cardiac cath lab. Once they had threaded the cath through his femoral artery in his left leg and had it up in his carotid, they called me back so I could watch the procedure. While the procedure is done Liam is continually under an xray and I am in the room with the monitors so I get to watch the stem cells pulse through his brain. It is still such a really cool thing to witness.

I watched them infuse on the right side of his neck, then they did something different from last time in that he went up some vessel on the back of the neck with another vial that sent an infusion right to Liam's cerebellum and parietal lobe.

Next they went to the left side but the cardiac interventionist couldn't get the cath threaded. I stood there watching and getting really nervous because he kept shooting it up his torso and then it would just bend and reroute. I didn't want to watch but at the same time I was rooted to my spot and couldn't move. The CI threaded that catheter out and switched it out a few times and after 20 min he finally got it threaded up to his neck. The whole lab fave out whoops and hollers and started giving thumbs ups to me. It was a huge relief to see that catheter up where it needed to go.

When they finished with that infusion I was asked to leave while they finished up with Liam. When the CI was done they asked me back to the room and we all gathered around and prayed over Liam.

It is a full two hours in the recovery room before we can be released and Liam did such a great job. I was dreading his recovery because last time he screamed for the entire time. And if you've ever heard Liam cry, you know he cries very quietly. But not after the last procedure. He wailed like a mortally wounded animal. This time he was so calm and only fussed a couple of times.

We were given the green light to go back to the hotel and 8 hours after leaving we were back. I was a bit concerned that Liam was running a low grade fever and sure enough in the middle of the night he woke up hot and dry and uncomfortable. I spent two hours awake with him trying to make him comfy with no meds. Dr. Anthony didn't want me to give anything if it wasn't necessary in order to allow the stem cells to proceed with out interruption. I used some essential oils tried to get him back to sleep.

This morning he still felt a bit warm so we took him to the pool for a couple of hours and it really cooled him off. I gave him a cool bath back in our room and I am praising God that he has been fever free the rest of the day.  But I'm still keeping essential oils on him for now.

Dr. Anthony called to check on him and will do so again his evening. We just feel so blessed and are thankful that things are going well.  There is a lot of bruising from the cath and they took extractions from both hips this year but he is healing very nicely. I really think the worst was having to take off the tape. Liam and tape are not friends.

Thank you for all the sweet texts and messages!The comfort felt knowing others have your back is indescribable. We are excited to head home tomorrow.  We have a long day with 12 hours of travel but after a week of isolation and this trip, I am looking forward to getting back to normal and moving Liam forward.

First Day of First Grade

This was the beautiful smile that greeted me this morning when I told him that today was finally the first day of school. He was so excited.

We've been counting down the days for the last week. 

He started first grade today! 

 I always have much to be grateful for but this year I am especially grateful for the ability for Liam to go to school, to get to participate in activities with kids his age, to be educated in a setting where he is well cared for and loved, to receive therapies while in school...because I know there are many children who don't get the privilege that we are so accustomed to as being a right. 

 

Never say never

It's become time to let you all know the news!  The blessings from the Lord have not ceased since we went last year and we are close to being able to take Liam for another stem cell treatment in the Dominican Republic!

It is just over one year from when we went before and I never thought we'd go again. It is sooo expensive. Like, we could adopt a child, expensive. I figured it was a one time shot and that would be that. But as I've seen time and time again, God lays a foundation in my life that he builds on and I stand in awe as his power is made gorgeous in my weakness.

After coming home last year Shawn and I received a very large donation for our stem cell trip. When we contacted the family that gave it to us and told them we had already gone on the stem cell trip, they told us to keep it and use it for Liam for his future. So that's what we did. The money was put into Liam's savings and it has sat there all this time. We then got several more random donations this past year and have watched Liam's account blossom into what looked like another payment on a stem cell procedure. Out of the total cost needed, we are almost 75% of the way there!! It's crazy to be so close when we haven't had to try!

I was thinking about how close we are and the timeline of when we'd like to take Liam again. If it all worked out it would be great to be able to go at the beginning of the school year when therapies start anew and the school year is beginning so we could see how his progress goes within that timeline. With that thought in mind I was wondering how to get to our goal before then. How can we get the rest of the money before the end of September?

We have done some fundraising in the past and the last time we went for stem cells I bought 50 tees with 
the new blue color but the same Limitless design as when we did for our HBOT treatments years ago. Because the money literally just flowed in last year, we didn't have to try to sell the tees. We were blessed beyond measure with exactly what we needed and so the box of tees has been sitting in my garage ever since I got them.

What to do with them? Maybe this time, with the end so near, we can try to sell them. If we sold all of them at $20 each we would be 80% of the way there! :) And that is so very close to the final goal needed!

 So, as a special needs mom and an advocate for a little man with no voice, I am once again, swallowing all pride, stepping out of my comfort zone, and sincerely, humbly asking you if you'd like to help out our sweet boy and get him stem cell treatment one more time. Friends, family of friends, friends of friends, strangers, and everyone in between, we'd be so grateful if you'd like to pitch in. It's no lie when we say every little bit helps.

Liam has his own paypal account where you can donate. The monies put there go directly to him. We have tees in small, medium, and large. The smalls usually go quickest. Aidan and Ian are wearing mediums in the photo above.

 

 

Thanks for following with us and watching how God continues to work in the life of our little boy.

Our hope is in the Lord where we can soar on wings of eagles, run and not grow weary, walk and not grow faint.

Didn't see that coming.

Holy diagnosis, Batman!  I got an email to log into our Blue Cross Blue Shield account because new information had been added for Liam. I've never gotten a notice like that so I logged in to check it out. I found a page that I didn't even know existed. It's a list of everything that Liam has ever been diagnosed with. It's creepy scary. 

A personal health record, with line after line of issues.  Some of them aren't even true and when I click on them I am able to say he either no longer has the issue or delete it entirely. Like 'cerebral brain deterioration'. What the... I don't even know how that's there. His brain isn't deteriorating, nor has it since the day we brought him home. That's NEVER been a diagnosis that I was aware of.

Delete.

Tooth loss? He's not even lost his first tooth yet.

Delete.

TB-related miliary fever?  Nope.

Delete.

Complication of medical care?

How is that a diagnosis??

Delete.

 It's also interesting to look at who listed each diagnosis in his chart. Some are the medical supply company, the medical equipment company, some the therapists, some his doctors, and some are even from the pharmacy.  The pharmacy? I don't even know how they can list a diagnosis.

What's funny is that years ago, if I would have seen this list, I would have freaked out. I would have been sad, looking at a bunch of terms that the world has to use to define my son. It's a lot of medical terminology and scary sounding words (muscle wasting, anyone?). But I look at this list now and I don't see each individual diagnosis. I see an amalgam of terms that can't even begin to remotely describe my boy. He is not defined by his diagnosis, we certainly don't define him that way. He is unique, wonderfully created, and so much more than a sheet of terms could ever describe.

~Happy 6th Birthday Boys~

It's been 6 years of birthdays with out Brady here to celebrate them with Liam. It's been 6 years of moments that we look around and think that there should be two boys right now giggling, splashing, or cuddling with.  It's been 6 years of trying to heal from the day we got to meet Brady but then said goodbye just one short day later. It's been 6 years of trying to honor Liam's birth day and not be sad that Brady isn't here to celebrate his special day too.

Job 7:11 Therefore I will not refrain my mouth; I will speak in the anguish of my spirit; I will complain in the bitterness of my soul.

This date is bittersweet for so many reasons. But one of the most important things it does do is remind me that no matter how difficult things are, I would never trade the hard days we go through if it meant not having Liam at all. The cost has been high, but the trade-off would have been worse.

I can't think back to Liam's birth day with out rehashing the grief that the day brings, the knowledge that there is an empty spot at the table where Brady should be. But I also can't think back without being grateful because it's the day that brought Liam to us. It's the day we get to celebrate Liam growing another year older. Brady didn't get that chance. Those boys, this day, are inexorably linked and it makes for the bittersweet day it always is.

Proverbs 27:7 But to a hungry soul, every bitter thing is sweet.

My soul, however downcast, always sees the extraordinary brilliance of a plan greater than my own, where one day we will all see Brady again. We will all get to marvel at the joy of his soul and be grateful for the heartaches he got to leave behind when he left this earth. He never had to know the pains we experience and for that I am eternally grateful. We will see him again.

We celebrated the day with cupcakes and presents and got our hearts filled with joy watching Liam crack up to his new Mickey.

Lookin' fly when I picked him up from school.

Presents!!

Mickey is hilarious!!

You can see how thrilled he is about the cupcake. Umm no.

So, happy birthday my sweet boys. It's been 6 years of crazy and I am so thankful to have been a part of it. I love you both more than words can say.





2 Samuel 12:19-23 When David saw his servants whispering, he knew that the baby was dead. So he asked them, “Is the baby dead?” They answered, “Yes, he is dead.” Then David got up from the floor, washed himself, put lotions on, and changed his clothes. Then he went into the Lord’s house to worship. After that, he went home and asked for something to eat. His servants gave him some food, and he ate. David’s servants said to him, “Why are you doing this? When the baby was still alive, you fasted and you cried. Now that the baby is dead, you get up and eat food.” David said, “While the baby was still alive, I fasted, and I cried. I thought, ‘Who knows? Maybe the Lord will feel sorry for me and let the baby live.’  But now that the baby is dead, why should I fast? I can’t bring him back to life. Someday I will go to him, but he cannot come back to me.”

 

Field trip's a trip

Remember how fun field trips were when you were in school? It was a day off from school work, we didn't have to sit in the chair all day and work at the chalkboard, and we got to do something interesting and exciting, something out of the ordinary. Normally the highlight of the week was getting picked to go outside and clean erasers, seeing how many words you could spell before the chalk dust faded away.

I still remember some of my favorite field trips though: getting to see how milk was bottled, going to the fair, seeing the local community theater, and visiting the fire station.

Liam got to go on his first field trip this week. He got to go bowling! I heard he had a fabulous time. I would have seen it first hand if I'd gotten my hiney out of the house and over there on time but I got so wrapped up in writing that my morning turned to afternoon before I even looked at the clock. I rushed to school and met them coming back in. His teachers filled me in on what I'd missed.

 

 Liam is a lefty, whether by nature or necessity we don't know, but apparently becomes a righty when it comes to sports. They said he used his right hand to roll the ball down the frame. He even bowled a strike! They were all so excited for him that they cheered and hollered. But that made him cry because he can only handle mild excitement over his achievements. Too much enthusiasm and he has a break down. Seriously, he will bawl if you cheer for him.

Not one to quit though, he soldiered on and finished up two games with a score of 96 and 112.

He even got a medal.

That's my little dude; having a field trip day to remember.

What's Wrong with Him?

I don't know if you remember this post I did on the old guy who had to hold his teeth in place to ask me, "What's he have?", but it was the first time I'd essentially been asked by anyone what was wrong with Liam. He took me off guard not only how he asked but also by how he worded the question. I really couldn't get past the stupidity of his question let alone how he asked it.

Today I was holding Liam in the waiting room at his therapy practice when a sweet little boy kept staring at him. I would look at the little boy and he would grin back at me. After several shared smiles he finally gained the nerve to ask me, "What's wrong with him?" 

Liam has so many issues that scream, I'M UNIQUE that it kind of makes me surprised we haven't gotten it before now.

I had prepped in my head for a while now what I would say when that question came up. But wouldn't you know I lost all ability to respond the way I wanted to? So I just smiled back at him and he smiled at me and turned back to the movie playing quietly on the opposite side of the room.

No matter that I didn't answer, this cute little boy was not done with his curiosity. He looked back around to us and smiled again when I caught his eye. He pointed at Liam and asked me again, "What's wrong with him?"

This time I was able to get the words out. Ready to explain, I asked him if he knew how he gets a boo-boo. He nodded his head yes. Then I told him that Liam has a boo-boo too but his is on the inside and you can't see it. I told him it was in his head. I started to go more into what the boo-boo means for Liam specifically, but with his curiosity satiated, he turned back around and glued his eyes to the movie for the remainder of our time in the waiting room.

I actually ended up disappointed that I didn't get to go into further detail to this little boy. I wanted him to ask more questions so I could give more answers. I wanted him to know that it was ok to be curious, that Liam wasn't something to be afraid of. He wasn't something to look past and pretend wasn't there. I wanted him to know that his curiosity was a good thing and that it's the only way people will see special needs kids as equals is if they learn more about them. I wanted him to know what was 'wrong' with Liam.

The natural curiosity of a child is a beautiful thing. It's how we will raise the newest generation to appreciate and value differences in all of God's children. Sowing into kids the worth of each person no matter their abilities will bring about adults who don't stare and ask, "What's he have?".

A month of changes

God has been so good to us during this season of changes. Liam being in school was always a bad idea when we first considered it and having a team on board that thought he could do it along with the positive changes we saw take place in Liam over the last year brought us to the decision that we should try it.

I am truly ecstatic to see Liam loving it. Liam only goes 3 1/2 hours a day and last week when I picked him up, wheeled him out to the truck, and opened his door, he started crying. He had full on tears with the rumpled up face. Liam pretty much never cries so I asked him if he was upset about leaving school and if he wanted to go back inside. He immediately stopped crying and looked at me. I told him he could have five more minutes and I wheeled him back inside where we surprised everyone by showing back up.

The staff was so happy to hear the story and it makes this momma's heart glad to know that he loves being there as much as he does and they love having him there. To know that your child is loved on by others is such a gift and when dealing with the needs Liam has, it's a special soul that looks past it all and loves on him anyway. Honestly, we have been truly blessed to have a lot of caring people in Liam's life, from church, to friends, to school, Liam's challenges have been overlooked by many an adult and they have loved on him in spite of them.

Math lesson

Circle time around the board for math

Liam's awesome one to one mentor Ronnie. He LOVES her.

I had Liam's annual IEP yesterday and it went really well. I think the goals they have are well thought out and the amount of interaction between therapists looks promising. One of the biggest changes for us is that because of Liam's success in the room and his desire to be there we are increasing his time to 4 hours 15 min a day.  Liam will start his day at 8:45 and end at 1:00.  I am really happy about the increase because when I would pick Liam up at 12:30 he would be in the middle of the math lesson and I always feel bad about having him leave before it's over. I would be taking him out of the circle and interrupting his lesson. It's probably part of the reason he got so upset at me the other day.

 

Liam's stamped tree

Liam was really proud of this cat mask.  He chose brown ears and the orange for the face and whenever I talk to him about it he just grins his silly grin. His teacher wasn't sure he really wanted brown because everyone else was choosing black but he told her twice that that was what he wanted and I think he's super proud of himself for making his own choices and seeing the results of it. 

Liam is having a great time. He's learning a lot. He's engaged with his teachers, therapists, and peers and he loves being there.  I'm so grateful for the support we are receiving and for the mentor God provided. It's truly been a wonderful season of change.

Guilt Trip

I thought that being almost 6 years out from Liam's birth the mommy guilt wouldn't be a problem anymore. But, dang if it doesn't just creep in when you least expect it.

I belong to a group on facebook of moms of micropreemies. I had completely forgotten I was a part of this group until recently when facebook changed how posts come across. Now, every person who posts to this micropreemie group gets a front row seat in my feed. I usually ignore them because they are almost 99% of the time stories of  "look at how good my 1 pounder is doing now" types of things and although I am very, very happy these kids are doing so well, it hurts my heart that Liam faces what he does. 

Tonight though, a post came through about how this woman's water had broken at 18 weeks and she was pressured to abort. She fought the Dr's, hung in, and her child is doing fantastic.

Why would that give me guilt?

When I lost my mucous plug at 23 weeks and 6 days, I begged the Dr to put me in the Trendelenburg position to keep Liam and Brady in. The steroids take 24 hours to take affect and I'd only had them for a few hours. I knew they needed more time, but everything I knew was being thrown out the window by this nice, soft spoken Dr who said they needed to be delivered in a safe, prepared environment instead of birthing them spontaneously. He explained that if Liam broke the bag of waters it would be dangerous and they could better survive if they were taken by c-section.

I have mommy guilt because I feel I should have told the Dr no. Now, I know that this is a silly feeling to have because I don't know how things would have gone if I'd said no. But I do know that I might not be feeling guilty today if I had fought back then to give them more time in the womb. And it doesn't help to know other mothers in a very similar situation to mine were given more time and put in Trendelenburg. Liam's life might be more typical, his challenges might be minimal, Brady might be here... The what if's are terrible to go back and think about because I can't change anything that has happened.

That's why I usually don't read them. I can't stand the guilt.

You learn to adore the small things...

like not having to go to the GI doctor for another year!

Yup!

A whole 12 months will pass before Liam has to go for a GI check up.  And do you know why that is?  Because I switched this little man over to REAL food 5 months ago!

I love Dr. Williams. If you are in the Wilmington area or are even within a 2 hour driving range of the Nunnelee Clinic, I highly recommend him. He came in, sat down, and said, "I don't know what you are doing with this blenderized diet, but Liam looks awesome. His growth is fantastic, he is looking great on the charts. I don't need to see you for another year." 

Woot!

Take a kid with complex needs, multiple doctors and multiple visits per year and you get a very satisfied momma when we get to eliminate one. 

Liam has been on the blenderized diet long enough now that he is regular (first time in over a year) and we don't have to give any meds or suppositories any more. I can't remember the last time he threw up from reflux. And he has gotten huge. He has gained two pounds since we started and he's now 3'8" long. He is getting really awkward to carry around. 

But, if we could just get head control.... 

Sigh. 

Not giving up prayer in this area yet though.

Matthew 21:22

PODD COMM

Wow, has it really been a month? We finished up preschool for Liam with a meeting. We met, for the second time, with an AT team from Raleigh. They brought something called a PODD for us to work on communication with Liam. They said they have seen kids that they thought would never be able to use the system end up being able to use it. And they felt right off the bat that Liam would be able to do it. He was definitely interested in it when we worked with him at the meeting. They were prepping staff for using it with him for this next school year when I asked if I could take it home with me over the summer and work with him myself. They thought that was a great idea so I ended up leaving with the entire book.


The system is essentially pictures on each page that can lead you to other pages with more pictures in order to put together thoughts and sentences through pictures. It will force Liam to use his eyes for communication but since his awful eyesight is his strong skill, we are hoping it will help him to be able to visually scan and get his point across. The book consists of a 3 ring binder and 70 laminated pages full of pictures.

It also came with a bracelet that he is supposed to wear at all times. The idea is to teach him to raise his hand when he has something to say but he always raises his arms so we are going to have to come up with something different
for that.

All in all, it's a great idea. It is what we have been doing for years anyway, talking through pictures and having him make choices. Liam is just such a complex kid that the idea of anything working perfectly is a long shot. But that's also my negativity talking. He has blown us away so many times this might just be one of those instances.

Tricky Heads

We have spent a long time trying to figure out something we could do to help Liam with his head control with no luck. And faced with a classroom environment for school this next year, we really need to do something...anything.

Working with the DME (durable medical equipment) company in our area, while they try to be helpful, can frustrate even the most saintly of souls. We have had two PT's, the mom, and the preschool teacher trying to figure out what was available, what we could trial, and eventually use permanently to help Liam with head control and we got no where over the last 3 years. Yes, heads are a tricky thing when it comes to equipment (not all head control issues are alike), but having spent the last three years only trialing out one thing is a sad testament to the state our children are in: needing adaptive equipment and not getting what they need. We are getting nowhere. Liam's not an isolated case here. And it's frustrating for everyone involved. I'm not exactly sure where the breakdown occurs, but when you know there is equipment out there that could help your child and not only can you not try it out, no one seems to be able to know how you could go about doing so, you tend to get fed up after a while.

With that in mind I decided to just go ahead and get Liam's Head Pod myself and not wait for medicaid/DME/school, etc to figure this all out.

There is only one licensed distributor in America for the pod and it ended up being cheaper than I thought. Still pricey at $330.00 but when compared with Liam's neoprene chest strap on his wheelchair (you can see it in the picture below) costing $375 to replace, you can see how the Head Pod is a steal!

It took us about an hour to get it put together and situated just right for Liam. It's not difficult, it's just having to piece together everything and figure out what sizes he needs and where it all goes.

Liam was patient and tolerable for the first half hour but the second half he started to get upset. The strap kept slipping off the back of his very flat head and I was afraid the Head Pod wouldn't work right due to him not having a nice bulging occipital lobe.  We found out that if you strapped it tight enough, he starts to look like a Shar Pei. And even though his forehead is covering his eye balls, his head is up! We're looking on the bright side of things here.

The device comes with several adaptors for the unit to be used on different pieces of equipment. We still need to adjust this area because it isn't ideal yet and the unit will come apart when Liam bounces around. But this is a definite step in the right direction for Liam and proper positioning. His PT and preschool teacher saw it for the first time today and they loved it. Ideally Liam should be spending copious amounts of time in it each day to help him build his muscles and strength and stamina. I got two hours out of him today so he's already getting used to it and making progress. He can even sit at 90 degrees with his head up for periods of time without using the pod.

The video testimonies on their website are compelling. Liam is different, as always, in that with his CP he moves a lot. He does calm and relax after a while and after having his PT and preschool teacher work with him in it yesterday, the results are pretty promising.

Don't Miss This!

Liam could NOT do this before stem cells. You can see how much of a struggle it still is for him and how he naturally keeps his head down, but the fact that he even tries and can lift it at all is a miracle! NO way could he ever lift his head to save his life before now. And in full disclosure, I am helping him facilitate lifting by rubbing his back, but he is lifting his head entirely all by himself here!

It's decided...

I am grateful to have had a fantastic preschool teacher for Liam for the last two years who was not only comfortable with kids as immensely challenging as Liam is, but also was willing to try new things, ask questions, and say she didn't know the answers but would find them.

We are going to dearly miss Ms. Lori next year. Liam will be leaving the preschool program and will be heading to Kindergarten. I posted before about how Liam really could go either way with his education; continue it at home having therapists come in or have him try school in a special ed classroom where he would be able to receive his services at school.

After a 2 1/2 hour IEP is was determined easily and without issue that Liam would benefit most in a classroom with his own 1:1. We are going to start out slow and Liam will only be going from 9:00-12:30. But even with such a short time, it is imperative that Liam have the appropriate help necessary in order to help him progress and grow not only socially but educationally as well. He desires to play and learn but can't quite accomplish tasks without the help of two people for the most part.

I have no idea who the one to one will be but I am praying now that the Lord would send someone amazing into his path. Someone whom Liam can learn from and who can learn from Liam.  I am not joking when I say Liam teaches everyone he meets. Everyone who works with him says that. He truly does teach us all
and this next school year will be a learning experience for everyone all around.

My sweet, crazy boy...

When I put my sweet little boy to bed, I thank God for him every night. No matter how screwed up our day can be, no matter what path I thought we were on and what we have had to diverge down, no matter whether Liam will ever speak a word or care for himself, I am so thankful that we were given Liam.

Yesterday could have been better, I won't go into details because it's gross, but suffice it to say that we had a full fledged mess on our hands and Liam couldn't have been happier about it. He 'talked' non stop for an hour. It's moments like that that we have to just laugh it off or else we could get pretty bitter. This is something we may have to do for the rest of our lives.  At times, it isn't pretty. Yet, I still would never wish for us to have an out.

I know 5 years ago I would have thought having to care for a child like Liam would have been the worst thing to ever happen. But that was very, very selfish of me. And I'm so thankful God knows the plans he has for me.

I hate the phrase, "God gives special kids to special parents". I am nothing special... but wow... is Liam something special!

Being mom to Liam doesn't make me feel special just because he has special needs.

It's just knowing Liam that makes me feel special.

I wish everyone could feel as special as I do when I get to tuck this little guy into bed at night.

He may never utter a word, but his life is speaking volumes.

No longer coping.

A friend posted on Facebook a while back something that really got me thinking.

Her post: just realized I have not cried about J one single day in the last 4 mos. I was at my worst about the middle of his life when the "wait and see" was starting to play out and apparent that my fears of his severity were true. But man, I thought I would never come out of those days but now I even have days where I like having a kiddo that is so different. It isn't all roses and sunshine...it's a lot of work & I'm sure I'll still have bad moments...but what doesn't kill you does make you stronger. 

I realized after reading her post that I was right there in those shoes with her. She's way ahead of me though because her child is much younger than Liam.  I've just now gotten to where she is.

I can honestly say that for the first time, these last few months have had me not experiencing any of the depression and fear that comes with this life we now lead with Liam.  




We aren't just coping anymore. We are living.
 
It's hard to put into words how much, fear, depression, anger, resentment, and sadness takes over at random moments when you are dealing with a new normal like ours. It will just hit you. I could go weeks at a time feeling happy and okay with life but then I would all of a sudden have two to three days, even a week, of depression over how much work this is and how many issues Liam has. I would get down and stay down. And the overwhelming issues he faces, we face, would cloud all of my thoughts. But eventually I would snap out of it and be back to myself again. Not letting on to anyone around me of what was going through me.


It's been encouraging for me now to realize that I have made it through the worst parts. It isn't all 'roses and sunshine' and sometimes I still have bad days. But they could be much worse. I could be bitter. And I could be making my kids life hell because of my inability to move on.

I do have issues that crop up that I don't know I will ever be able to get over. Certain situations can bring instant anxiety and I flee from them. I'm assuming that's a form of PTSD. But at least I don't dwell on them like I used to.


I have never gotten angry with God over what we have gone through. It's just not in me to be that way to Him. I have questioned. Believe me...I have.  But I haven't gotten an answer. And I have doubted greatly His plan with Liam many, many times. But God always brings me back to the point that He created Liam in the first place and He chose to give him a life here with us instead of taking him home with Brady. And for that I am forever grateful. No matter how difficult things are, knowing Liam now and living a crazy life with him here has been such a beautiful blessing, even when I haven't always seen it as such.

It's been such a slow healing process for me. If someone had told me it would take 4 years for me to get to the point I'm at now I would have thought them crazy. I would have said I was fine years ago. And I doubt I'll ever be 'over it'. But I am finally enjoying every minute of it.

Routine

I don't think I've told this story here.

I was just reminded it of it while putting Liam to bed.

Liam has a very much favored book to read on his iPad before going to bed. We have a set routine for him where he reads that book, says prayers, get's his stuffed glow-e monkey and blankie and then usually goes right to sleep.
It's the same routine.
Every night.
The only thing that might change is if I read him some stories before his Nighty Night! book. But it's always the same once we start that book.

One day the app had an update that would allow you to do an in app purchase of 3 new animals. Since Liam loves this book I thought it was a brilliant idea. I added the new animals and got started reading it to Liam. I had no idea what the animals were and thought it was so cute when a bunny appeared. I looked at Liam to see what he thought and he went perfectly still. Just staring. All excitement was gone. Then the next page happened to be another new animal, the pony. And he burst into tears. The next page was the third new animal, the cats, and he was pitching a fit. He was all out bawling.

He was so upset over the change to his book that he did the only thing he can do: cry.

I was proud of him at that moment. Not because he was whining about the changes to his book. But because he was telling me: He didn't like it. I had changed it. And he wanted me to know.