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
17 comments:
Oh I know it's tender to have a little one who may not advance the way you had hoped. Caleb will forever be like a newborn as well...
There aren't many mamas who get that "fresh from heaven" newborn feeling forever with one of their little ones. Even though it's not always easy... I know that we are so blessed! :) Love you!
I hope Gavin gets feeling better real soon, that would be very tiring and emotionally hard on his momma for sure. I loved the honesty of the post, thanks for sharing your feelings!
I have nothing to say that you haven't already said ( you are VERY smart and strong, lady!), so I'll just say I LOVE YOU and wish I could give you a million hugs! You're an amazing momma and Gavin is sooooo lucky to have you! And when you worry about if he's bored or unhappy, all you have to do is sing or talk to him and he instantly lights up like you just made his day. Not very many people who haven't endured what he has does that!! ((((HUGS)))))
The emotions seem to come back when we least expect it. We are blessed though to have these special little ones who show us what life is all about....love and joy....angels from heaven.
I'm sorry Gavin hasn't been well. Praying that you'll be able to see a doctor soon and get some answers.
I wish I had the words, but know that I got your back. From one momma to another.
I so totally know how you feel. Although Reagan does not have DS...she is extremely delayed (at about a 3mo level) probably from 2.5yrs of nonstop, unrelenting seizures. I know that feeling of isolation. That no one else knows what you're going through. Reagan is our only child, so I think in a way that's even worse. We have no link to the "normal" outside world. We don't fit in with anyone! It can be very depressing at times. I also know your frustration with the nausea and vomiting. Reagan has a few days each week where she's extremely nauseous and retching nonstop. Wednesday she did it all day...literally every single moment. It's very stressful not being able to do anything to help her and knowing that taking her into the hospital, they also won't be able to help her. Those are hard days indeed.
You know we are kindred spirits! I still need to call make a wish to schedule our appointment. We had to put it off going out of the country. Seriously, we should see if that could be part of our wish, and we could go to Disneyworld together. Then we could finally meet. If he's super gaggy, could you back off on feeds? Maybe slow them down? Also, have you ever tried robinol for his secretions? It may help too.
As for them not being seizures because he's aware...thats bull crap! Jax is always aware when he has seizures. And he has all kinds of weird movements that are seizures!
Heather and I had a very similar discussion about Zoey and Addy the other day!!! I wish we were closer I would love to come hang out with you guys!!!! Gavin looks adorable in his pix!!! Hugs!!!
I sure wish we all lived in a little community with one another, to hug and love on each other as needed! I know that my girl does more than Gavin does, but I can absolutely relate nonetheless. Emily is at about a 9 month level. She's 7. She has not made any advancements in years, honestly. It's quite depressing at times just to go to therapy. To see little kids, 2 or 3 year olds, who seemed so similar to Emily last year. They are now all advanced from where they were, and obviously so. To see that even though it's delayed, they make progress, while my girl doesn't. Emily hasn't developed any new skills in years. It's quite hard to swallow sometimes.
Like I said, we need our own village. Until that happens, ((((hugs))) is what I have to offer!
I hope you figure out what's going on with him, it's no fun to be sick for so long. You're doing a great job with Gavin. Hang in there...it's SO worth it!!!
I read your post the day you wrote it but didn't have time to comment.
I've told Lacey this and the same goes for you. There is no one in this world who could be Gavin,s mom the way you are. God knew what was going to happen to Gavin and he choose you to make Gavin's life so wonderful. In spite of everything he is up against every day he is happy.That smile is because of you.
and if you feel down and discouraged at times. gosh there is nothing wrong with that. And isn't that what we are all here for? To lift each other up in the tough times. You are amazing!! And one of the best days in blogland for me was you left me your first comment. I really wanted to get to know you, and your family.
Hope you are feeling better today, and Gavin too!!!!
hugs!
I am so sorry Gavin is still struggling with whatever it is that is going on. I do know that our family and especially myself have felt exactly the way you feel. Izzy doesn't have DS but she definitely has the delays. She has a cousin that is just a little younger than her and as much as I love each and every one of my nieces and nephews sometimes it can be very difficult to spend a long amount of time with Lexi. I find myself sitting there watching her do all the things that Izzy can do and it stings.
The other thing I find is that I get what I call my "isn't it crazy jealousy?" I find myself getting jealous of other special needs kids who can do more than her. We have a little girl at the school I teach who is 2 and has spina bifida. She is very cute and I am so happy for her and yet when I see her walk around the hallways with her little walker I can't help but feel instantly jealous and I think to myself is that crazy? Her feet bend completely in and yet I am jealous.
It is so hard to be who we are and we can love our little ones endlessly, but at the end of the day it hurts.
I try to remind myself to stop feeling sorry for myself or for Izzy because God handpicked each of us for each other. Izzy may not have the life I wanted for her, but I have to believe she is having a better life with me than she would have with someone else with all that she has gone through.
Hang in there. I pray for you and the many other families I have met through blogging daily. We have been given such a blessed but difficult path to follow. I just wish we were all closer to help each other out.
First off, I'm so sorry Gavin is sick. I will keep you all in prayer. Second, I so admire your willingness to share your heart. You share so many things that I feel, but then feel too guilty to say. Hang in there, we ARE going to have to meet someday. Til then, I'm holding you in my prayers.
Your thoughts, emotions, feelings...all so true. This road is exhausting and not for the weak (even though we feel weak at times). It is an honor to care for these little guys. Our lives and the those around are changed by it all.
Not to mention those amazing smiles can melt any sadness away!
I have been praying that Gavin gets well soon. Must be so frustrating to know he is not well but not know what is causing all of this.
I wish I knew what to say to you about Gavin and dealing with your feelings about what happened to him and him not being a typical person with DS. Just know that I understand and hear what you are saying and I pray for you all daily.
Much hugs and love to you.
I am one of those that is on the other side of this, but I can completely relate to your post. I remember when Carter was first born, I'd go through those moments of looking at other "normal" children and realizing that it wasn't what the future would hold for him. It's heartbreaking, and it's all a process that I went through. Just when I had finally come to accept his future, life through another unexpected curveball at us, and he was taken away much sooner than I had expected. Now, I go through the same process only by looking at kids like Gavin, and thinking about what his future should have been. I think all of the feelings you are having are totally normal, and I want you to know that you are not alone. There are many people out there who can relate to what you are feeling in one way or another. It's a crazy life we lead, isn't it?
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