Amazing

Yesterday I witnessed the most amazing thing I have seen in a long time.

Gavyn stood up, unassisted from a sitting position!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is HUGE! Beyond huge! I almost lost my mind watching him do it. And he keeps doing it. Seriously, you may have no idea how big this is but it is SO big. He amazes me e-v-e-r-y s-i-n-g-l-e day.

Chatter

 This little man has been chattering up a storm. I could die from his cuteness some days, OK, most days. The phrases he says either crack me up or melt my heart. I slightly remember this sweet time with Skyler, two and three are hard ages to deal with because of the independence issues and pushing the boundaries. That is mostly what I remember about Skyler and this age but, I do remember the amazing amount of chatter that came out of that kid as well. Gavyn has a few new phrases that I love...
1. He will come in whatever room I am in and say, "Mom! Whachya doing? What's that?!"
2. Every time you give him something he says, "Thank you! You're welcome!" We are working on who says what but it is to stinkin cute that he says both.
3. Anytime you come around a corner or there is a loud noise, "Oh my! You SCARED me!"
Hilarious.

Hearing all Gavyn's chatter and of course Skyler's endless talking makes me sad that we missed the two and three year-old time of chatter with Nevin. He was mostly silent during his second year and just starting to open up when he turned three. He simply did not have enough sounds to really talk. Now that he has more sounds he can talk more but he is almost 5 and the cute-to-die-for-phrases just won't come out of him now. When he is chatting me up it involves Lightning McQueen, Iron Man, things he is doing with his brothers etc. It is just different talk. And of course it is still a battle to understand him and for him to make his mouth say the right sounds. We are getting there, slowly, slowly.

Speaking of talking... Skyler is home from school and keeps yelling at me from the kitchen that Monopoly is all set out and when am I ever going to be done on the computer and come play with him. Endless talking... endless... :)

Taking things for granted

It has been an interesting 36 hours around our house. I can't go into detail right now but it has me examining our life, where we have been, where we are now, where we are going. After a whirlwind of a day, we had gotten home from church, cooked up some dinner, fed the kids, nursed the baby, fed myself and was finally feeding Gideon some yogurt. As I sat feeding him Gavyn walked over to us with a toy for Gideon, I gently told him not to put the toy on the tray because it had yogurt and mashed up pieces of cracker on it and I didn't want the plush toy getting dirty. Gav stuck out his lip, put on his angry eyes, gestured at me madly and "stormed" off. As I watched him holding this big toy and walking away I marveled at how far we have come. Only last December (2011) did he receive his first medical walker and start to slowly figure out how to walk with it. In July he only used the walker (lovingly named Walk-Walk) when we weren't at home and now we have passed the walker on and there is no looking back. Such a short time and huge strides. Our life is constantly changing and you never know from one minute to the next what will happen. Some progress may seem to take forever until, you look back at it and realize what a short time it really was, especially in the grand scheme of things. Waiting... I think it is one of the hardest things we endure.

God's Calming

Who's on Pinterest? I know you are and I know you love it, who doesn't?! I saw this little graphic (is it considered a Meme? I'm not sure since it is not humorous, not sure what you call these officially but, I love them!) a couple weeks ago and I feel like this thought has been a reoccurring theme in my mind right now. Our church has been doing a study on Galatians called  Freedom. We have been slowly going through the verses and breaking it down into how Christianity brings you freedom from so many things. Last week our campus pastor brought it home with Freedom from Self Effort and this line really stuck out to me:
"Self effort - self effort, it will not change you, it will not transform your character." 
I'm not sure that that connects outside of brain but here is how I know this to be true. 

My story before I had two special needs kiddos was something like this:
I grew up in a Christian home, my parents and grandparents were all strong believers and were a good example for me. I grew up in a very legalistic church that my family got sucked into for awhile but eventually my parents realized their kids hearts were more important than rules. They started participating more in things we were into like going to concerts etc. When Ryan and I got married we found the Journey to go to and that has really helped me grow.

I knew the gospel story and could tell you it but it really was not in my heart. I really thought it was though. I thought I got it all but I really did not. I have a very distinct memory of a moment when Gavyn was in the hospital and this is what happened. 

I think we had been at Glennon for a week. We knew he had hydrocephalus at that point and we were not sure if it would somewhat resolve on its own once he wasn't sick. We did know the pressure on his brain had increased and it was causing his brain to be pushed down on his spinal cord which was causing his body to crash. I was rushed out of the room, the neurosurgeon was rushed into the room, and he (the surgeon) placed an external shunt in his brain to drain off the fluid. Being scared was an understatement of how I felt at that moment. Terrified doesn't even come close. I sat in the hallway on a bench by a window and prayed over and over again for him to be ok I was not ready to bury a baby. It seemed like an eternity before they came to get me. He was knocked out when I got to him, there was a shunt placed on the top of his head, it was hooked up to a bag hanging on a pole and the bag was slowly filling with his extra CSF. At first I was ok, I rubbed his little hand, I kissed his little face. I'm not sure when but at one point my mom got there and was standing across from me, quietly crying and rubbing his arm. Suddenly he opened his eyes and looked at me and all I saw in his little eyes was complete terror, it was like he wanted me to pick him up and make it better and I couldn't. I couldn't even hold him because he was hooked up to a ventilator at that point. I felt beyond helpless. I could not stop crying. I could not quiet my mind and I could not make the storm of medical issues stop. I was entering my new life and it was painful and it was confusing and it was more than I could handle and I felt broken. And in that moment the Gospel became real to me. Brokeness became real to me. If letting Gavyn pass from this life to the next was going to make him whole I was willing to let him go. And in that moment realizing that the God of the universe sent his Son to die because that was the only way to make me whole and restore me to him became so real I could touch it. I don't even know if that makes sense but it did. 

And that is when my real relationship with God began. Because I knew I was entering a storm and I knew it was going to rage around me and I knew the only peace I was going to get was going to be from Him. Not because this was going to end and not because I was going to read the right book and be able to change myself or the kids. I knew it was not going to end but I knew God would hold me through it all.

33miles - Arms The Hold The Universe

I know it seems like this could be
The darkest day you've known
But believe you me
The God of strength will never let you go
He will overcome, I know

And the arms that hold the universe
Are holding you tonight
You can rest inside
It's gonna be alright

And the voice that calmed the raging sea
Is calling you His child
So be still and know He's in control
He will never let you go

Through many dangers, toils and snares
You have already come
His grace has brought you safe this far
His grace will lead you home

And the arms that hold the universe
Are holding you tonight
You can rest inside
It's gonna be alright

And the voice that calmed the raging sea
Is calling you His child
So be still and know He's in control
He will never let you go

You can hope, you can rise, you can stand
He's still got the whole world in His hands
You can hope, you can rise, you can stand
He's still got the whole world
The whole world in His hands

And the arms that hold the universe
Are holding you tonight
You can rest inside
It's gonna be alright

And the voice that calmed the raging sea
Is calling you His child
So be still and know He's in control
He will never let you go
He will never let you go

He's still got the whole world in His hands
Still got the whole world in His hands

Genetics

We have had a very adventurous week (last week actually!) so to speak. When Gavyn got sick (after his birth) it was very public. My hubby designed a fb profile picture of Gav that read 'Pray for baby Gavyn' and people went crazy with it. I'm not even sure how many people used it as their own profile picture or just posted it on their wall but I'm sure it was in the hundreds. Everyone we know and everyone 5 degrees removed from us knows about Gav and they all ask about him. It really is awesome that three years later people still genuinely care about him and us. What is odd about it is that not as many people know of our struggles with Nevin. He was just two when Gav was born and at that time his delays were becoming more apparent but were over shadowed (in a way) by Gavyn's illness and recovery. When people ask me if I worry about Gav I can honestly answer them that I do not worry about Gav as much now, and I truly worry about Nevin more. Gavyn has a diagnoses, but Nevin does not, and that adds more anxiety to it. So, while Gavyn has had a great team of therapists and doctors for three years, for those same years we have been searching for answers for Nevin and for the right combination of doctors, therapists and school. He is our little puzzle that we are trying to put together and see what the picture really is all about. Right now we just have bits and pieces.

This week we took the plunge into the very unknown and scary territory or genetics. The idea of having his genetics tested and mapped out has come up a few times over the last three years but each time I would consult with our pediatrician and also Nevin's endocrinologist and they are both of the mindset that his genetics are fine and most of his issues can be traced back to his thyroid condition. I have agreed with them and we kept putting the testing off. But last year during our visit to the cleft team, genetics came up again and we decided to take the plunge, if for nothing else than to rule it out and erase the question from anymore doctors minds. We sent in the paper work and waited. Now - that all happened the last week of May and Gideon was born June 13 so, a lot of things have gone by the wayside. Finally, in December I realized genetics never called us to make an appointment like they were supposed to. I called and was surprised to get the secretary the first try and get an appointment for the following month. Nevin's paperwork was sitting on the doctors desk in the pile of new patents he needed to review and Nevin's had not reached the top yet. Either there are lots of new patients coming to see him or he's very slow making it through the stack!

The idea that I was having my kids genetics tested to see if there is a missing piece did not actually hit me until I was sitting in the office with Nevin and bouncing Gideon on my knee. Suddenly, it hit me like a brick wall that this was not some normal check up, it was not something to just cross off the list, this was a serious visit that would in tail blood work and I was not sure what else. First we met his assistant who was very bubbly and friendly but also knew her stuff and went over a lot. We mapped out the family tree and I answered a lot of questions, hoping I knew all the correct answers. She left to review with the doc and shortly they were back. I was so impressed with the doctor when he came in. He put me at ease, he put Nevin at ease, he completed his testing of Nevin with him not even realizing the doc wasn't just playing with him. Once he was done checking him over and asking me more questions his assistant played with Nevin so that the two of us could talk. He answered the few questions I had but I was very honest with him and told him that although I have a million questions to ask I don't want to ask them or research them until we get the blood work back. There is no point in me worrying about all these what ifs because in two-four weeks we will have a more clear answer. I couldn't tell if that surprised him but I could tell he was pleased by it. I am hopeful we will get a call in two weeks tell us everything was fine but if we get the call to come in for a talk I am glad it will be with a doctor that I feel I can respect and trust. After our chat the nurse walked us to the lab where we waited for forever to get blood taken. The only nice thing about waiting was all of our doctors, nurses and our orthotist Barb ran into us and we got to chat with everyone and pass the time a little faster. Once it was Nevin's turn we saw our favorite tech Dougy who always talks to Nev and understands him. She's awesome

And now we wait. We have already waited a week since I started to write this post and hopefully next week we will get the call. I am already getting nervous every time I hear my phone ring. 

Crash

I haven't been posting from lack of content but rather from my computer crashing 2 weeks ago. I have been itching to blog and was very frustrated that I couldn't. I have the Blogger app on my iPad but sometimes it's hard to write a long post on there. Now that it has been so long since my last post I have tons of things to Blog and I'm going to divide them up! Hold on to your butts people there's gonna be an out pouring of thoughts and posts by the end of this day (hopefully!). :)

Outings

Getting out of the house since Gideon was born has been a little more hectic and just harder in general. In the beginning it didn't help that he was born June 13 of 2012 and it happened to be one of the hottest Summers on record here in the Lou. If you weren't going to the pool or going out after sunset it wasn't much fun. Thankfully he really enjoyed the pool and we were able to go a lot. But overall family outings have taken a back seat and me going places with the kids alone has all but stopped. My mom is awesome and helps with therapy Wednesdays and other appointments that come up so I don't have to fly solo. I can manage three alone (doesn't matter which 3) pretty easy but you add that fourth and it gets sticky. Lately, I am having more anxiety about going places. Ok, anxiety might not be the right word, that is probably a little strong, I'm just having more feelings of... well... wondering if people are judging us when we go out. Like today for example...

I already mentioned that we are trying to have more family time this year. Today was our first Saturday that Ryan was not going to work, I was not going to work and we didn't have to go somewhere in, well, forever. I was stoked when I went to bed last night and realized we could wake up and just do whatever! The only commitment we had was church in the evening. I love Saturday night church and hate when we have to miss. This morning we got up, watched some TV, ate some breakfast and started to get dressed. I threw out the idea of going to a park and doing lunch after, everyone was game and off we went.

When the kids were younger it was not so obvious that they were different. You could shrug off the questions about Nevin's speech and Gavyn's physical development. Partially because they are both so small for their age that people still think them close to two years younger than they actually are. But going to the park today was hard. When we arrived there was no one else there which surprised me on this abnormally warm day in January. I was partially relieved that I didn't feel there would be questioning eyes watching us but also sad that Skyler would not have new friends to make. After about 20 minutes of playing more parents and kiddos began to arrive. My first fear is always for Nevin. Nevin is super social and outgoing, nothing scares that kid and he really wants to make friends but when you can't speak clearly that posses a problem, an obstacle. Kids are usually game to play with each other in those types of settings and not be too shy but, I always watch when Nevin goes up and tries to talk or engage. It stops people, they try to process if he is being goofy or if that is his real voice. It hurts. You want your kids to be excepted and immediately he is usually turned down. If it is older kids and Skyler is there he is quick to stand up for his brother and include him and I am very grateful for that. Also, Nevin doesn't seem to notice or mind quite yet, I know that will change soon. My second fear is Gav and his fit throwing. He gets overwhelmed/scared of anything new - people, places and things. At first today he was totally fine with dad but quickly he was not. Ryan changed locations on the playground and he lost it. It seemed he was very fearful of the fact we were not all in close proximity to each other. Eventually I put Gid in the stroller, Gav on a park bench and sat with them as Gav literally screamed his head off. If I spoke to him he yelled at me for daddy and would start to hit me. If I ignored him he cried for dad. We lasted another 15 minutes like that and then it was time to go.  He cried all the way to the car but settled down once everyone was buckled in. We drove back to the Steak n Shake closest to our house for lunch (about 20 mins) to give him time to settle. Then at the restaurant he was totally fine.

And that is why we don't go out a lot and for sure don't do playdates anymore.

What a Week

Sorry for the little break. I did post on my other blog here once or twice since my last check in. Anywho, I'm back and still committed even as I listened to Gideon upstairs "crying it out". That's right, we are knee deep in sleep training and it sure does feel like a losing battle. Send sleepy vibes our way!

I was chatting with my sistier-in-law Patty this week when we got together for our bi-weekly Bible study. She was asking how things were going and I said, it feels dumb to say but I am so glad for a new month and new year, it feels like a clean slate! She agreed, saying it felt cliche to say but it feels so true. At the end of last year we got into some bad habits as a family and something about the holidays being over, school back in full swing, new year etc. I feel like I can start anew.

Back in October Gavyn had his yearly CT scan and check up with his awesome neurosurgeon - Dr.Elbabaa. It felt pretty routine going in, I didn't have any concerns about his shunt or hydrocephalus because he had no symptoms of things being wrong. Boy were we wrong! Super long story but he ended up going in for surgery and having a second shunt placed for his 4th ventricle. Maybe on another day I will come back and document that whole story. A week after surgery we all ended up passing around the stomach flu, and it was Halloween. Crazy. That is when I feel like our family went a little nuts until the end of the year. We went into major survival mode and just never got out of it until now. Seriously, that was only 3 months ago but feels like a lifetime ago. It was rough. November was full of doctor visits, Thanksgiving, family and getting ready for Christmas. Gideon has been struggling with ear infections and colds and the sleep issue has been getting worse and worse (he's still screaming upstairs by the way). I went from calm-fun-mom to psycho-mom. It felt like the kids were loud (they are) and screaming all the time, not listening to us, we were running from one thing to the next, not getting a lot of sleep, trying to have fun because it's the holidays and just ignoring the problems going on. We needed a break, we needed something to change up the routine but it never came. Christmas never felt like Christmas. It could have been from our crazy weather here, 70 one day, 40 the next, its the midwest for pete's sake, where was the snow?! But it just never felt all rosy, jolly and surely not Christ centered around here. There were a lot of time outs (for everyone), yelling, pulling my hair out and crying last month. I'm glad it's done.

Ryan and I finally had a long talk about the family and how things are getting crazy. Unfortunately, when your husband works a full time job and a part time job there are a lot of hours in the week devoted to him working. We can't change that a lot but we can change when he works. That is the plus to his part time job being freelance graphic design. He can turn down projects if he needs to and he can work when it fits into our life. We decided to try and work around that and also make more time for our family to be a family unit and cut loose a little. Somewhere in the Fall we lost our sense of having fun together. Probably because we were dealing with some really serious issues and fun wasn't a top priority. I am very hopeful for our changes though. I have felt so much calmer this week, I have made more time for myself, I have made more time for the kids, to just sit and enjoy them and be goofy with them, that is something we all really need. I keep looking at our new prospects and realizing this could be a really great year for us. I am hesitant to say we are deserving of anything (when you live in light of the Cross that is not something you can't really say) but... We have been through hell and back a few times now and I think we need a year to breath.

"I have a voice!"

Have you watched 'King's Speech'? When it came out a couple years ago Ryan and I went to the Moulah to see it and LOVED it. We were knee deep in trying to figure out Speech for Nevin. Oh my word, if you have a kid with a speech issue you must see this movie. For me it gives me hope in a few areas:

1. It might not be today, it might not be tomorrow, it might be when Nevin is late in his life but he will find his voice. He already is.
2. You just have to find the right people to surround yourself with and when you do, you can succeed.
3. We all have something important to do and say in our lives.

We just watched this movie again the other night and I was still super inspired. Seriously, watch it if you didn't when it came out, good gravy - go watch it again! I feel like we are finally in a sweet spot with therapists and doctors for Nevin. PSKids has been amazing with giving us great therapists to work with and our current ST there is really working hard for us. She has been on the phone with the hospital Cleft Palette team and Nevin's school more than once. She is working hard to get people on the same page and get things moving. The Affton school district has just been amazing. They too have been on the phone and busting their butts to get a plan going. At the end of last week I got a call from the ST at Cardinal Glennon who saw Nevin briefly for the Cleft team. She talked to me like a real person, someone who knew what I was talking about, listened to my frustration over ENT visits, and ended the conversation telling me we would find help for Nevin and make him better. She is on our side. Finally, someone else on our side! We get to go see her at the end of the month and are hoping beyond hope that he has made enough progress with his speech to tolerate an x-ray of his palette. If they can get enough info from that x-ray perhaps they can find the problem and go fix it. Could it be possible? Could we really be able to comprehend his speech later this year? It wells up so much hope in me that I could burst like a bubble from excitement or disappointment. He is an intelligent little boy who has overcome his share of obstacles and himself broken odds and deserves to have a voice. His old ST at PSKids would tell him every week, "Nevin, one day, you will own a corporation and I will be working for you!"

Scrapbooking

Yesterday was a glorious Sunday for me. My three girls from Community Group came over around 10 bearing all their crafting supplies and tasty beverages to share! We got everyone set up in my little craft room and began our projects. We heard stories about Ireland, Germany, babies, awkward moments, laughed and did not cry! Imagine that. We all accomplished a lot on our projects, took a short lunch break, drank lots of hot beverages and just encouraged and supported one another. We lived in and lived out community. It was beautiful. I was able to create about 6 beautiful pages in Gavyn's baby book and it felt good. He deserves to have a baby book filled with his memories. I have not gotten to the hospital pictures yet, that will be more difficult and the girls are ready to come back and help me through it. I was able to vent some of my feelings and have them speak some truth into it. There are so many feelings about that time that I have not shared with others and have not processed. Mostly because I don't share them and therefore get stuck in my own thoughts and can't break free. But there is a time and season for everything and I can truly see that God has ordained this time, with these girls for me to deal with some of it. I know they don't have all the answers but I can see why it is the four of us together. We all bring something different to the table and they are all dear to me.

One day at a time we keep not dying and getting up and moving.

Control

Today was a hard day. Ryan had to get invoices ready for me to be able to prepare our tax return before February. The boys insurance comes do for renewal in February so every January we scramble to get all the paper work prepared. It's a small price to pay.

It has been a long emotional week though and having Ryan unavailable for the first part of the day was extra trying. Gavyn had his IEP evaluation in December to determine his Qualifications for Special School District. Friday was his IEP meeting where we sit down with a big group of people (6 from school, our education advocate and myself) and write the goals we would like to see Gavyn achieve over the next year. After we determine the goals we determine the best way for him to achieve those goals and there are a lot of options. As you can imagine there was a lot of stress leading up to the meeting, during the meeting, and now, anticipation for getting started. I feel good though. I love our school district, I like the teachers, I love the PT at the school and am comfortable with the OT. I know it will be good and positive but he is my baby and I do worry about him.

I also decided to try and make his baby book this week. Skyler's baby book I did in record time, Nevin's took a little longer but was done well before Gav was born. But every time I sit to do Gav's book, I flip through the pictures and well up with tears. I haven't even looked at pictures in a year, maybe longer. I finally thought I was ready. I set everything up in my craft room, I was excited, almost giddy to have a project. Then I pulled out the box of pictures, took out the stack, one by one I looked at those pictures, the more I looked the more I cried,the more I cried the angry I became. It ended with me shouting at God, "why?! Why did you do this to HIM?!" I could careless about the stress it has put on me but the fact that God allowed it to happen to him, a helpless baby, he had no choice, he was born, did nothing and almost died. But he didn't die, he survived, but with the cost of so many scars. It's not fair. It's painful. It sucks. And mostly I hate it. Tomorrow my CG girls and mom are coming over and we are going to drink yummy drinks and do that scrapbook one painful page at a time, together, and cry and make lame jokes. It will be therapy for my soul.

I realized at church tonight that I need to let go of my children. I struggling with a control idol and it has gotten really bad with my kids. There are so many things I need to "control" for them. The right school, the right therapists, the right therapy places, teachers, doctors, specialists, medicine... But, I have go too far. I have forgotten that first, they are God's children and he has in trusted them to me. They are not mine. I don't have the ultimate say. I gave my kids over to God at church tonight. I did it again when we got home. I will do it again when I open my eyes and probably 100 times tomorrow. I need to post it on the bathroom mirror. I want to be free this year and by becoming free I must let go of my grip on my life.

Commitment

I am not sure where or how to start this blog. I have been reading a lot of blogs from other moms who have special needs kiddos, some with autism, some with speech delay, others with downs syndrome, and the bottom line is this: it is good for my heart to read them. I have felt very isolated for almost 3 years now and just plain weird to people we meet or people we have known. Our life went from a normal family of 4 to a family of 5 with two special needs kiddos over night and now a family of 6. A lot of issues I thought I had dealt with came pouring back out of me just this week as I looked through Gavyn's baby photos that are yet to be put into an album. I never made his baby book because it was too emotional for me. I thought I was in a good place to do it and process it. I realized I'm not. I am not healed, I am not OK. I have an amazing community group though because the girls are going to come and we are having a scrapbooking partying that I am allowed to totally cry through it while I process Gavyn, again. Its a place to start. And that brings me back to the beginning of this. I realized there is still more story to tell and it might do another mom good to read what we go through. It could be different than her life or it could be strangely familiar, either way, it is good for me to write and it might be good for someone to read. I am not a resolution maker but I want to try and post something every day on here. Even if it is just my high and low for the day. Some days may be profound and others may be sad but I need to do this. I need to keep pressing on in our story and I need to keep processing it. This blog will move beyond just Gavyn and include Nevin's struggles as well and our families struggles. Process with me as I again pick this back up and keep trying to move into a better place for my heart, soul and family.