I'm not sure where the first half of September went. I could barely believe it when I looked at the calendar today it said it was already the 16!

We are finding our groove with school, activities, therapy, homework and such. It was a rough take off but things are leveling out nicely. We have an incredible amount of help this year and that has made a world of difference. Our new roommate is super helpful in the mornings and evenings when she is around also, with her flexible schedule she is able to help when I need to run a kid to the doctor. My good friend Tina has gone through some major life changes and happens to be available to help me a lot as well. She even has a special day every week she comes! Thursdays with Tina - we love it. Of course my mom is always and will always be helping us as much as she possibly can. It takes a village to raise my children and I am ok with it. After doing most of this (doctors, school, therapy) on my own for 3 years I am accepting and welcoming the help with open arms. I am realizing more and more that we are meant to live in community and that means letting people into our messes in a very personal way. We have a small tight circle that knows all the dirty messy things that go on in our life (just like everyone else) and love us anyway. We are committed to walking through life with these people and they are committed to us. It is a breath of fresh air. It has enriched my life, my kids life, my marriage. I wish all families with special needs could experience the community we have. I know some do, I am afraid a larger percentage don't though. I know we did not for years, as I mentioned before. We are blessed to live by family, a lot of family and be close in relationship with them. That has always meant the world to us and I know a lot don't even have that. Anyway.... we laugh a lot about how it takes a village to run our life. Some days more than others! Thursdays in particular are crazy in the evenings with multiple kids needing to be at multiple places at the same time. We knew having a large family that was something that comes with the territory. Even with each kid only allowed to do one sport or one activity outside of school at a time that is still 4 things to get to each week. I know it will be a little nutty from now to eternity. Right now I am grateful for extra mom's to help raise my kids.

School

The school year is in full swing! Nevin and Gavyn went back on the 15 and Skyler started the 20. In some ways this year will be calmer but when you have four boys your life will always be busy. This year the three oldest are in school but three different schools. Gavyn does preschool two mornings, Nevin has all day kindergarten five days and Skyler is in second grade. When we were picking schools for Skyler we found a fabulous small private school that uses the Charlotte Mason philosophy. It is everything I could ever want in a school, we love it, he loves it, they love our son, it is a great fit. When Nevin was ready for school though we knew he needed all the services public school can offer. He needs the therapy, he needs the pull out time, he needs a lot and our beloved private school can't offer him that. We put him in a great public preschool and he had lots of help! It was a great fit for him. When Gavyn turned three we knew we faced the same issue with him and enrolled him in the same preschool Nevin was still at. In my delusional mind by kindergarten Nevin would be ready to go to SCCS with Skyler but, obviously, that is not the case. Thus enters the year of three kids in three different schools. Right now we are evaluating the school issue year by year. The private school is a perfect fit for Skyler, the preschool is the perfect fit for Gavyn, I am having a hard transition to public kindergarten for Nevin but I think ultimately it is the perfect fit for him. Ryan tells me every time I cry about kindergarten that we need to give it a good try and if we decide it is not a good fit we will find something else. Honestly though, Nevin goes to school happy and comes home happy, I think it is a good fit. And when Gavyn is ready for kindergarten (2 years from now) we will evaluate where he will go. 

What this year may bring

We have been insanely blessed this past year. Ryan landed a new job in the communication department at First EFree Church. He does the graphic design, communication, video type stuff. He loves his job and the people love him. It has been so good for our family after 8 years of financial struggles and 3 years trying to do freelance work. It is reassuring knowing when the pay is coming. We have had other doors, financially, open up for us recently as well. I knew it was a burden we had been carrying, I just had no idea what a load it was until it was gone. Having four kids is obviously hard on the finances but when you have two with special needs it really adds to it. There are many things we don't do or can't do. I am in no way complaining about this. We have had very supportive family that has helped us and gone above and beyond to help us make life good for our boys. But in the last six months, having so many doors open, having so many blessings falling down, it is overwhelming. You feel undeserving and like it is a mistake. Knowing that we don't need to worry about finances for Gavyn is liberating. Knowing that we will be able to do extra therapies for him and other extra things is exciting. You always want to do the best for your kids but sometimes you simply can't do all you want, I feel like now we are being freed up to do that much more. It's exciting to not have to worry about the future for him and us. 

Eye Sight

When Gavyn had his neuro surgery last October he recovered well but two days after his surgery his eyes crossed. It caused quite the scare in our house, after neuro surgery a big warning sign that something is wrong is eye sight. We had to rush him back to Glennon, have a CT done and see his surgeon. Thankfully he was OK, unfortunately his eye sight has been greatly impacted since. Slowly they have been un-crossing and for the last couple months we have been doing eye drops every night to help them further. Next month we see his eye doctor again and see if Gavyn needs to have eye surgery to fix the problem completely or if the eye drops will ultimately fix it. Talk about a slow painful process - almost a year! I had almost forgotten how much progress his eyes had made until I was looking at pictures, this is him in February:

Look at how terrible that left eye is! This is him now:

 Woah! Keep our fingers crossed for no surgery!

Growing like a tree....

Gavyn has been on growth hormones for about 3 months and the boy has grown 2 inches, went from a size 6 1/2 to a 7 1/2 shoe, changed shirt size from 2T to 3T and pant size from 18 month to 2T. It has been crazy. I say growing like a tree because it will slow slightly and he's getting stronger not just taller like a weed. I've been pretty faithful about taking a picture on Mondays but have missed a few. Here is what I have in order!

 

isn't it crazy how much his face changed from a baby to a preschooler? Happened over night.

Hold onto your butts people....

That's a common phrase in our household, I'm not sure where it came from. Months ago (maybe longer) I started saying it - a lot. It has caught on with the kids and Ryan, it is used mostly in the car but occasionally other times. I say it now because there is much to catch up on people....

As you may remember Nevin was scheduled to have surgery on June 6th and in a strange turn of events surgery was canceled and we found ourselves in the hands of another surgeon all together. We fell in love with Dr. Lin and were so grateful to be with his team, I wish we would have had him the whole time but, the important thing is that Nevin got him and he's fabulous. We were bummed that surgery would not happen before July and Nevin would be on a very restricted diet for 6 weeks which could possibly ousts our vacation plans to Texas. We patiently waited for a phone call to schedule surgery. On Friday June 15 I took Nevin to Cardinal Glennon to have his cast removed (did I blog that yet?) and as we were pulling back into our driveway my phone rang, it was Cardinal Glennon (this is becoming an eerie trend). I answered and was shocked when the secretary said, 'Dr. Lin had a cancellation and wants to fit Nevin in on Monday, can you do that?'
"This Monday? Like three days from now Monday?"
"Yes ma'am. Would that work?"
"absolutely!"

Talk about perfect timing. Not only did his surgery date only get pushed out 11 days from his original date, he would finish his restricted diet the day we arrived in Texas. We were beyond excited and overwhelmed. There was no time to dwell and worry just time to get ready for surgery!

The surgery itself was long. Before surgery even started we had to wait an additional 2 hours, that made our wait time a little over 4 hours. Our nurse told us Dr. Lin is a perfectionist and almost all his surgeries go late because he treats every child as his own and won't stop until the procedure is perfect. Ok, I could wait for that. Nevin did great waiting, we watched a lot of Scooby Do. Once he was back in surgery they took us to a private waiting room that was so great. My parents brought the other boys up for dinner and we sat in peace with them trying not to worry too much. His surgery lasted for over 4 hours. I was nervous but ok, I knew he was in the best of hands. When surgery was out and we saw Dr. Lin and Dr. Roe they were very pleased with how things went. They were able to tighten the muscles in the back of his throat, lengthen his soft palate and when they got into his mouth they were able to see he did indeed have a submoucus cleft palate which they were able to close.

Side bar....
I'm not usually one to worry about being justified but the moment Dr. Lin said he did have a submucous cleft... I have never felt so justified in my entire life. I had known in my gut before Nevin was born that there was something wrong with his palate. For three years I didn't know what, I just knew something was wrong, when he was 2 1/2 I found out what a submucous cleft was and for 3 years since I have been trying to convince all of our doctors that that is what he had. No one would believe me though because they couldn't see it. His speech therapists agreed with me and were a big support in my fight over it. How did I know? Prepare to feel one of two things (ok, maybe both), I am either a whack job or I had a divine revealing before he was born.
About two months before Nevin was born I had a strange dream. In the dream I gave birth to Nevin and before I could see him the nurse took him away from me to another room. Frustrated I went searching for him all over the hospital (which was odd because we were planning and did have a homebirth with him). I finally found the nurse who had him but her back was turned to me, when she turned around she was holding Nevin and she was pulling his teeth out, he had a cleft palate and did not look like a normal baby. I grabbed him away from her, held him and just cried, telling myself how much I loved him.
Now, the stranger part of all this is not just the dream but what I feel was a revealing of our life. Nevin has felt like a puzzle to us and we have searched so many doctors at Glennon trying to find the missing piece that would put him together for us - Me searching in the dream. We took Nevin to the dentist at Glennon who had to do major dental surgery on him and was the one who referred us to the cleft team. Dr. Veraldi was the first one to take me seriously - The pulling his teeth. Finding out he did have a cleft from Dr. Lin - obvious with the dream. And Dr. Braddock finding he had 22q deletion - me crying over him being different but knowing I loved him anyway.
Close the side bar....

Nevin did fabulous after surgery. The poor thing looked terrible and felt terrible but did so well. We had a nice surprise, one of his classmates mom is a nurse at Glennon and works on the floor we stayed at. Her two boys had cleft palates and Dr, Lin was their surgeon as well. It was nice to have a familiar face around. We stayed at Glennon for 3 days and nervously but optimistically came home. By the following Monday Nevin was back to his normal self, almost! His speech has continued to improve, it is still going to be a lot of work though. He is such a trooper and working so hard.

One of the Many Things Special Needs has Taught Me

You know when you have your baby and they come out seemingly perfect? You count their toes and fingers, ooh and aah over their cuteness, compare who they look more like? Moments we all look back on and treasure. Then you come home and "mom guilt" sets in. Am I feeding them right? Am I feeding them enough? Too much? Cloth or disposable? Home made baby food or bought? Public or private preschool? Soccer or baseball? Gymnastics or dance? Awana's or cub scouts? The list goes on and on. Then you start watching how little Sam over there interacts with his/her parents and they all seem to be in a bubble of love while your kid chases after their little brother with a rock and a look of passion for fresh meat in their eyes. You start screaming at the top of your lungs, your hubby goes chasing them down and all the while little Sammy is picking flowers for his/her mom. You just want to sit down and die. Your family never compares to the other family. You love your kids beyond measure but there is something wrong with them, right? They just never seem to behave or those times are few and far between. You feel like you are always a wreck and don't know what is working and not working when it comes to parenting. The fact is you are just tired because you are taking care of little people who can't do much without you and it takes two of you to accomplish what needs to be done in a day. And again you look over at the Joneses who have it all together and you don't understand what they have that you don't have.

Don't lie, we all do it. Maybe some of us more than others but, we all have our moments. We all have a different idea of what the perfect family looks like and it is never us.

And you know what my two little special super hero's have taught me? To not compare. I am not perfect and I still compare myself to other moms and my boys to other boys. But having kids with special needs has really taught me to not compare because I can't. I have to focus on the progress we are making as a family and how that is measured for us, not for you. I had a typical developing baby first who did everything fast and furious. Then I had back to back special needs boys who have come to their own milestones in their own time and in their own way. Now I have another typical developing baby who is like a little monster! Our family is so different from the "normal family" that there is no way to compare. It's apples and oranges and I'm grateful. I compare our life to what our life was a year ago and can be thankful for the progress in each and every child and in myself. There is no other family like mine so why compare to someone else's family? My kids don't compare themselves to what they can do by looking at others, they are excited each time they over come an obstacle. And my goodness, so are we!

Maybe you don't have special needs kiddos and are grateful for the health of your kids but this still applies. There is no other family like yours. Compare your family to your family a year ago. Celebrate the milestones or inchstones whatever they may be. Don't waste your happiness comparing your life to the life of another's. We have all only walked in our shoes and we know our kids better than anyone else and who they are - amazing kids.