Gavin has been sick for over 3 weeks. The weird thing is, it doesn't seem like he's sick because he is happy as can be, he has no fever and his O2 sats are great.....but, he is extremely stuffy and it sounds like he's snoring BIG time when he is just breathing. He's gagging, retching and spitting up a ton. And, he is coughing lots too.....probably from all the spitting up that he is doing, which means that some of it may be getting into his airway. I have had 2 Dr. appointments for him, and both have been canceled. One due to an error of mine and one due to the doctor having to cancel, because he was sick. (Nolan and Caleb thought that the latter was very funny, because he's a doctor.....I guess they think doctors don't get sick?.....and also because this would mean that the doctor would have to go see a doctor!.....insert cracking up here!.....my boys are nuts!) :)
Anyway, I have no idea what is going on with Gavin, but I do know that all of this is wearing on the Momma! I don't like to see him suffer and when he is gagging and retching....which is a normal daily occurrence, but lately it's an all day long thing!.....he definitely looks like he's suffering! Plus, he has been having some weird seizures, although the neurologist doesn't think that they are seizures, because he is totally coherent while having them. But, they sure look and feel like seizures to me! They say that it's something neurologically going on, but not seizures??? Whatever they are, I don't like them and neither does Gavin, because he usually fusses and cries when he has them....which is not typical of Gavin, unless you put him in water. Seriously, Gavin almost never cries or fusses, unless he is mad or not feeling well.
Anyone have any ideas what is going on with him?????
All of this wondering, and running to help Gavin when he is gagging, and mostly being stuck inside is making this Momma a little grumpy and a lot emotional!
Well, there is more to the emotional part, but I'll get to that later. First, here are some cute pictures of Gavin and Daddy. I love them, because it shows Gavin being silly, cute and showing off his happy personality!
Isn't he a little honey?! Well, I think so anyway!
Here he is with Daddy's hat on. Oh, and you might notice in the background, a girl that also has Down syndrome. She is the one at the table behind them. She is wearing an orange headband in her hair.
Seeing her made me so happy! I get such a swelled heart when I see someone else who has Ds, like Gavin does! She was so cute!
But.....seeing her also made me emotional.
She was so high functioning, and this is what made me feel sad and emotional.
There is such an instant bond with parents that have a child who has Down syndrome, but for parents like Joel and I, there is also a sense of abnormalcy, to be around the typical person who has Ds. It's difficult not to feel a huge let down, knowing that Gavin could have grown up to be like this girl. He could have had the opportunity to walk one day, eat at the table with his family, enjoy numerous activities......etc., if only he hadn't had that massive stroke, which was the fault of non-observing and non-listening medical professionals! You have no idea what it feels like to see your son in someone else, but to know that they will never be like that person! Gavin's brain was severely damaged by this stroke and it could have been prevented, but it wasn't, and now our life is forever in a stand still. Gavin is 4 years old, but at a 4 month level mentally and developmentally.....this is a hard pill to swallow every single day! Most days I am really good with all of this, because at least I have my sweet boy and he can smile and he brings so much happiness to our family.....but when I think of the "what could have been's", all of this really STINKS!
Right now, caring for Gavin is difficult at times, but it's only going to get harder, as he grows. Each and every day I try to come up with things to do with him and places to put him to lay down or sit.....but, when your 4 year old can't even sit up on his own, there aren't a whole lot of options! And, this makes me sad and it makes me feel guilty when I have to leave him lying on the floor by himself to do......pretty much NOTHING! He is legally blind from the stroke, plus he's mentally a 4 month old, so watching cartoons isn't an activity for him to do. He has to be bored, just sitting there or lying there, with almost nothing to do! But, I can't and don't even want to always entertain him and stimulate him.....but when I'm not, I feel sad and guilty! At school he gets lots of stimulation, but he hasn't been to school for 3 weeks, so he must be bored out of his mind....of course I don't even know what is going on in that mind of his, because he is only at a 4 month level!
Can you see how this would be emotional on a Momma?!
I really feel alone in this world. There is almost no one who knows what I am going through and what I feel on a daily basis. I don't "fit in" with Mommas who have all typical children, and I don't "fit in" with mommas who have other children with Ds, because although they are going through hurdles of their own with their child, their child still has the opportunity to advance......Gavin is likely to stay at this level forever. Gavin and I just don't fit in and this makes me feel sad.
I feel so blessed to know of one Momma and child who has an idea of what this life is like. But, I only know them through blogging and they live far away, so the support isn't really there. And, actually, I can't even say that I know exactly what their life is like, because Jax is even more fragile than Gavin is and he's gone through way more than Gavin has had to go through. But, I feel blessed to "know" them and have the long distance support of such an amazing Mom and boy! They even have 4 boys in their family, like we do! We have lots in common.....except too many miles between us. :(
I recently read a blog about a Momma who's child passed away. She said that people tell her that the saddness gets better with time. But, she said that this is so far from the truth! Each day may even get MORE difficult, since having lost her sweet girl! ( I can't even imagine the hole that would be there if one of my children died before me! I seriously don't know how I could go on each and every day! ) While I'm not even trying to correlate the two, I'm going to use this to explain something.....Gavin having lost his opportunity for a future of advancement, is somewhat similiar to suffering a death of a child. The promise of a productive future with Gavin is gone in so many ways. Gavin will never be what he could have been.....and this leaves me with a hole in my heart and mourning every single day. BUT.....I still have Gavin and my heart's hole is no where near the size of this Mother's. My hole can be filled in an instant, with one of Gavin's sweet smiles and with the Grace that God supplies me with every day!
Please pray for all the Mommas out there who are longing to be with their child today!!! The thought of this pain literally breaks my heart!
Well.....I'm actually feeling quite better after typing all of this out! Sometimes I just need to release all of these feelings, then I can get on with my day and feel happy again. Because, Gavin TRULY makes me feel happy! I just wish that his life could have turned out a bit different.
Enough of the sad.....how about some Gavin pics to put a smile on your face!
"OK Dad, enough of the hat already! It doesn't even fit me and it totally doesn't match my outfit either!"
"Thank you! That makes me much happier!"
"He who heeds the word wisely will find good, and whoever trusts in the Lord, happy is he." Proverbs 16:20