Our oldest son has a rare genetic disorder called X Linked Hydrocephalus. This is our journey though life with that very special boy that will, hopefully, inspire and educate others. I want to share the ups and downs, trials and triumphs, all while letting others know that they are not alone.
We grant the wishes of children with life-threatening medical conditions
to enrich the human experience with hope, strength and joy.
We certainly feel like our son's life will be enriched with hope, strength, and joy with his wish!
Our son LOVES to bump around in his wheelchair on the grass or gravel. He also loves to travel. He laughs at every bump in the road and thinks that no one should ever fix those bumps!
So, what could be better then a camper? Umm... nothing!
When we got asked, by one of his doctors, if we had ever thought about asking for a wish from Make A Wish Foundation, we said no. But he thought that we would qualify for one because what he has will ultimately end his life early. So we applied. And he qualified, and was medically cleared for a camper!
After looking at a couple different sizes and styles we chose one that will fit our whole family and one nurse to help care for our son. And we ALL love it!
Our whole crew and staff at Willy's RV
We went to pick it up a few days ago and have been busy getting it set up for Noelie and trying to figure out the best spot for all of his equipment. It is very roomy and has plenty of storage for almost everything. His special bed, food pump, O2 concentrator, Bi-pap, food, medicine, his wheelchair, vest treatment...everything. We can travel away from home and he will still have everything he needs to continue having the quality of life that he has now, and deserves.
This has given us a real sense of freedom. To be able to go, and do, and see what other families get to even though Noelie has so much stuff. Flying with everything would take a lot of planning and we still wouldn't know how he would be able to handle it. With this camper we will just drive where ever we want to go instead.
Willie's RV staff were so nice and easy to work with too. They walked us through everything we needed to know and answered all of our questions. When we were all done and ready to go, all of the staff came out for a picture by the camper.
I think Noelie really likes it...
The boys enjoying the camper
Then, if that wasn't enough excitement for one day, Papa made and delivered a new sandbox. We have outside cats, so I wanted one that closed up. I saw this one and thought it was perfect. Apparently the kids think so too...
Our new sandbox
It was a great day and now we are spending a lot more time outside. It is days like these that make our unpredictable, crazy life all worth it.
There is one thought that I know is true and I am so scared. I know that others have dealt with this already and have seemed to do OK. I only hope I can be as strong as they appear to be.
I don't think about it all day, every day...but when I do I want to cuddle up with my son and never let go.
What is this thought that I am so afraid of?
Losing my son. Having him pass away before I am ready. Knowing that at any moment he could be gone.
Some day I won't be able to look at his sweet face. I won't be able to hear his laughter. I won't be able to see his smile, except in pictures. No more kisses. No more cuddles. No more...
In some ways, life would be easier. No more fighting with supply companies. No more equipment like wheelchairs, standers, or feeding pumps. No more lifting our child. No more IEP meetings. No more fighting for inclusion, though still important for the rest of the world.
We will be left with our other 2 children that can walk, talk and eat on their own. We will also be left with a gaping hole in our hearts. A hole that can only be filled by one person, and that person will not be there.
On good days I don't think about my fear; but when we have a lot of good days in a row I can't help but wonder when the next ball is going to drop. When our life will get flipped upside down.
On bad days I wonder if that is how it will end. Will the last time I see my baby be when he is in distress, fighting off a sickness, or watching his body being overtaken by seizures? Will I be able to be with him when he passes from this life into the next?
How does a person move on from that?
They say that time heals all wounds.
They say that it gets easier.
They tell you to take it one day at a time.
How does a person move when their heart gets ripped out?
How can you breathe when all of your air is gone?
How can you move on, when your whole reason for living is now gone?
I don't have those answers. I pray for those that are faced with questions. I admire those that can smile, even after a loss like that.
I hope that when I am forced to answer those questions I can find the grace and strength to do so.
This date might not mean anything to you, but it is a REALLY big deal to our family!
This day marks the 1 year anniversary of our sons last hospital stay!
A whole year without a single hospital stay is such a huge step in the right direction. He has gotten sick a few times in the last year. He has had a few seizures. He has had a few sleep studies (but we are not counting those as hospital stays). Even with all of that stuff he has not needed to be admitted into the hospital.
The first 6 months of his life we were in the hospital more than we were out. Every year since his birth we have been admitted at least one time for one reason or another. Sometimes a seizure; sometimes an illness, but it was always something.
I would like to say that his success is all because of our AWESOME parenting and ability to see changes in him and make adjustments to his routine to prevent anything from progressing too far, but I can't.
His success is due to a few things...
He is getting bigger/older and his body is stronger
We have gotten better at seeing symptoms and adjusting to his needs
We have nurses whose job is to monitor him and provide treatment
God didn't think we needed to be there (I usually see other peoples needs and help them in one way or another, even if it is just noticing that they are crying and offer a hug)
We have become really sheltered from the rest of the world because of the younger kids and weather.
No hospital stays = More time to learn other things
As a parent of a medically complex child, I am so proud.
My heart sings.
I know that everything can change in an instant but this last year has proven that we can make it through almost anything...and we don't necessarily need a doctor watching him over night!
In typical " Know everything about raising kids even though I don't have any" fashion, I thought being a parent was easy and not really a big deal. It was just what people did. I would say things like "If that were my kid...", or "I would NEVER do that with my kid". And then I became a parent.
Becoming a parent has taught me a few things so far, and I am sure I will keep learning as they get older, but the biggest one is how much love and worry you can have all at the same time. I am not really sure how people live to be old if they have had kids. My heart feels like it may burst right out of my chest every single day!
Here are some other things I have learned...
1) Being pregnant is not all it's cracked up to be for some people.
Every one of my pregnancies were hard on me. Physically and emotionally. I really wish I could have enjoyed it more.
2) Moments like these are NOT easy!
Seeing your baby hooked up to tubes or not feeling well is so hard. Sometimes they take it better then you do.
3) Teaching them to work hard and try harder are good things you should do.
And will pay off in the long run
Our oldest two work really hard to be good at the things they can do. We don't expect them to be the same but we do expect them to be the best that THEY can be! And our youngest is well on her way toward that goal too.
4) They will get messy
5) They will want to try new things
And give you a few heart attacks every day. Sometimes it is better to just look away and deal with whatever happens next. Hopefully they will either learn to do it better so they don't get hurt, OR learn to not do it again! Encouraging independence requires a strong mind and heart. There will be lots of yelling...at you...by your child...because they have an opinion but don't really know what that opinion is.
6) The bond between siblings is wonderful and will melt your heart.
If these pictures don't show love then I don't know what does! I think they all are truly obsessed with each other. I don't know if every family is like this but I hope they are. Seeing the way they love each other makes being pregnant with them all worth it.
7) Do things as a couple...without the kids.
This is so important! You are what your kids lean on for everything. You are their rock and their stability. If you are not strong together then your kids will fall apart with you. Plus, it is good to remember what it was like before kids. Something attracted you to each other and you need to remind yourselves what that was. I also like the adult conversations. He doesn't yell at me when I don't let him carry a butter knife around the house and I don't have to remind him to not run with a "grugar". That's screwdriver, for those of you that don't speak fluent toddler.
8) Each child will test you in one way or another
Each one of our kids is different and each one has tested our strength in their own way. Our oldest is disabled, has a lot of chronic illnesses, but smiles all the time and has the most laid back personality you will ever see. Our middle is our strong independent one. I have often said "I am not ready for this". Crawling, walking, climbing, being sassy... I am still not ready for this. Our youngest cried a lot as a newborn. It has taken almost 6 months for her to smile and do something other than cry and sleep.
9) Forgive each other.
One of the things we are constantly dealing with are seizures. Our oldest son has them from time to time and every time he has one our life gets turned upside down. We realize that our time is limited and we try to enjoy every moment.
10) All our pieces may be different, but they fit together perfectly!