What a difference in a year!!

It is defiantly interesting to see what a difference a year can make in a person’s life.

Here is a picture from February 14, 2013.

 It was taken the day after what is quite possibly the worst day of my life. At the time Nate had been in the hospital almost two weeks and had been recovering from his pneumonia and there was talk on the 12^th about how he would be moved to a regular room and most likely discharged by the weekend. Well that all changed in the early morning of February 13^th, when I was awoken by yelling and footsteps. I actually thought something was going on in the room next door and I remember thinking the nurses needed to get out of my room and go there. It was around 5am and it took me a few minutes to realize that the alarms were actually going off in our room and I was trying to process what was going on. Luckily a nurse who we were very familiar with came and sat by me and told me that for some reason the high flow oxygen was not working for Nate and that they were trying to bag him to get him to start breathing again. I distinctly remember asking her, if I needed to call Chris and tell him to come and her saying No I think were ok. Well 10 mins later his oxygen was back up and his heart rate was steady so I stepped into the hall to call Chris to let him know what happened. By the time I called him, the code alarms were going off and the nurse told me to tell Chris to get to the hospital ASAP. I walked into the room as the fellow looked at me and said we have no other option but to intubate him to try to save him and I was like ok then do it stop talking. Long story short, that intubation eventually lead Nathan to getting his trach about 6 weeks later when we had run out of other options. It’s funny looking back at the picture, because at the time I was very reserved about sharing photos of him looking so sick because I was concerned how others would feel. Now when I look at those photos all I can think is wow, God is Good and my son truly is a miracle! My perspective has defiantly changed this year and where last year at this time we were honestly looking into the logistics of how we would bury our son (who remember at the time, was technically still our foster son) to this year where we are awaiting the birth of our little girl, Amelia. I’ve told many people that God is giving us Amelia at this time of year so that it can be happy time instead of time filled with dreaded memories.

This is a photo taken of Nate yesterday:

It is unbelievable to think of everything he has been through this past year and how far he has come. Sometimes when he is doing so good, I forget that no he is not cured by any means and that he is still suffering from several issues including pulmonary hypertension. Luckily we have an amazing team of specialist that are constantly impressed by him and a group of therapist and nurses that I can’t imagine our life without!

Special Bond with Virtual Friends!

The past couple of weeks have made me really think about friendship and what’s important when forming friendships. Don’t get me wrong I have some awesome friends in my life and I can’t imagine life without them, but I also have formed an incredible bond with a group of ladies that I’ve actually never met in person. These are moms of other special needs kiddos, the majority I’ve meet through a Facebook CHARGE support group. From an outsider, I can imagine your thinking really lady your telling me these ”virtual Facebook friends” really mean that much to you and my answer is yes. I understand your doubt because if I wasn’t writing this I probably would be saying the same thing, but the truth is I don’t want to think how my life would be without them in it. I have really formed a special bond with some of these ladies throughout the past year because they understand firsthand the daily struggles of raising a medically needy child. They understand my excitement when I say Nate brought a toy to his mouth and put it to his lips. Its also a since of relief that Im not the only one feeling guilty that I didn’t get to take Brody to a playdate because Nate had an appointment one day or the struggle to be a good wife when you haven’t stayed in the same bed as your husband for weeks because your trading off on hospital duty. I wouldn’t change my life for a moment but I truly thank God every day for the relationships I have formed.

So the question is what made me bring this up, Heaven recently gained an angel, Connor was a little CHARGER whose mom and I formed a friendship since both boys came home trached and vented the same week. I don’t think his mom will ever know how much support she has given me and really how much she became my “go-to person” for trach advice because we were both experiencing it for the first time. Connor’s passing away was much harder on me than I would have ever imagined, I truly felt as though I was losing a relative. I know Im not the only one who felt that way either, it was amazing to see how the CHARGE community came together and rallied behind this family during their loss. Connors mom compared her CHARGE family to the mafia! Its true we get mad at each others nurses , doctors , and even families when someone harms one of us!

Because I was not with Nate when he spent three months in the NICU, I never was able to meet other moms going through similar situations with their kids. I hear about the bonds made between NICU moms and I feel sad that I wasn’t able to form relations but incredibly blessed that I have been able to meet moms that not only can support me but I can also support them. Hopefully we will be able to attend the CHARGE conference in 2015 and I can stop being a Facebook creeper and finally meet these women in person. The most ironic part of the situation is even Chris and my mom are at the point that they are starting to be able to figure out whose kids is who and who is in the hospital because I will bring up milestones kids are facing etc.

I recently starting talking to another mom ( a  friend of a real friend) and we were discussing this very fact, that there is just an amazing bond formed between special needs moms, and that she agreed that sometimes she feels closer to them then her “real friends” . I think its because the fact when talking to them I don’t have to filter my emotions or explain medical terminology because they get it.

The moral of this story is I truly value all of my friends whether real or virtual and I can’t imagine how I would’ve made it through the past year without them