Ronald McDonald House

I know I have done a post on the Ronald McDonald House of Dallas before. Today I got something from the Ronald McDonald House Charities of Arkoma. (This region) I have seen the one in Fort Smith that is attached to Mercy. They have four overnight rooms. I have toured it before, I don't remember why in particular though other than I think it was just curiosity.

Recently we have had one storm after another..... It's like we can't catch our breaths in between them.... The most recent storm being the worst of the recent ones started a week ago today and is still going but I think it's moving out, I hope and pray..... It was the worst one in a while because of the implications...... It's bad when I cry in front of other people...... Yet even through it and my fears with it, I was doing my best to remember through it, that no matter what, God will provide a way. And He does. AND has.

Then today I got the request for donation letter with address labels in the mail. You all have probably gotten those before. Yet seeing that it was from the Ronald McDonald House of Arkoma brought it to reality how close we are getting to going back ourselves to Dallas..... My heart is heavy and not just for us. I know there are thousands of families across the country who are like us, some better off, some worse. Yet all of us are familiar with the sights, sounds, smells of hospitals.... That's one thing we all have in common. Many of us have stayed at a Ronald McDonald House at one time or another. Almost all people know of at least one who has stayed at or has seen the campaigns to raise funds for the House charities. "Donate change!" "Save your pop tabs!" type thing.

My own image

My own image

Part of what came in that piece of mail from Arkoma was also  a welcome note that lets the one donating write on the inside about well wishes for comfort, love, strength and peace. The back I took a pic of.

I can remember the first time I stayed at the one in Dallas. It has been just over eight years ago now. It was days before my daughter's first surgery and I was a mess.... The first face I remember meeting there was Norma. I can also remember when I stayed at the new house the first time, about a year later. By then I was used to coming to Dallas. Not always used to the news I would get. My longest stay was 24 days. My daughter had just turned four.

"Fighting your child's illness - and winning." I wish winning was always the case. There are families who don't get to take their baby home..... I still remember vividly the one I stumbled upon the day after my son's first surgery. The PICU..... I still get tears in my eyes when I think of that day.....

Yet the day is fast approaching that we have to go back for another surgery. He will be a week out from his second birthday getting his second major surgery..... And I'm not ready.... I don't think I ever will be. What will be the new experiences in this one is the type of surgery as we are first timers with a chiari decompression but also that it is at Children's Medical Center and not Medical City. I'm used to both facilities, A LOT but never been inpatient at CMC. I hope we get a view of the downtown skyline from our room. I want to finally get a really good shot of that skyline at night.

I do have a shirt for surgery day though.

Vinyl Me This made this for me.

I can't wait to wear it! It's too bad I can't wear it for church Sunday and for my community band concert. ;) In all seriousness, even before the surgery is here, we have two sleep studies to get done, pediatrician check-ups, one minor appointment and state Special Olympics. (My daughter qualified in the stand and jump on track and field!) I can't wait for that weekend honestly. It will be just a mother/daughter weekend because she won't have us the time we are in Dallas this trip......

I think that's the hardest part in the journey, having to leave the other kid(s) behind to take care of the needs of the other. Having two with special needs makes the journey a little more unique in a way because it's like they take turns on who has to be away from either mom and or dad.... The flip side though, I think they will both grow up with more appreciation of what family really is.

And in all reality, family isn't always blood or even doing "typical" family things. It's the memories that count.

You never know when you will need a Ronald McDonald House for you or a loved one and I can say that we have many good memories at the one in Dallas, even if our reasons for being there weren't ideal.

Never take things for granted....


Blessings!
~ Special Momma ~

"Normal is all I want."

How many times have you heard that? Last time I heard it was Wednesday night.

Normal: What really is normal? Well, besides just a setting on the dryer. Webster's says normal is: usual or ordinary : not strange, mentally and physically healthy. Those were the short ones. The rest is here.

Whenever I hear people say, "I just want the baby normal." it stings at first. Really. Then I want to ask, "What if it's not?" Then I think also too of each time my world crashed with each added diagnosis on my children. Yet also the many blessings that have also come. I mean, who's nine year old can brag and say she has hung out with P.O.D twice in her life? Who's daughter can say they went viral over a kind gesture? Who can say they have watched their son go through surgery like her daughter has and yet watch that daughter have nothing but love for her brother? Me. My gems. That's just in the last 9 years. No telling about the next nine. Besides that I'll have an 18 year old and a almost 11 year old. YIKES!

Okay so obviously we have established that my children aren't considered "normal" Duh...... Well, if we all really want to be technical, none of us are based off of those definitions. Think about it. Besides if "normal" doesn't mean fun, I don't want a part of that one!

Now it's no bed of roses either..... Seeing my children go through surgeries, pain, migraines, asthma, frustrations over school, things they can't do or not well enough in today's standards,  etc. sucks. It plain sucks....

I'll tell what makes me angry though too. Insurance and billing people.... It's a blessing and a curse to have insurance. It's crazy how the lives and comfort/care hangs in the balance of if a for-profit insurance company wants to pay or not. Therapies are only covered by Medicaid for the most part. Then you get people like this who decide Medicaid is something to just "be rid of to play games" just because. Without Medicaid, children like mine go without therapies, appointments, medications, surgeries, hospital care, oxygen, trach care, and so much more. I need to shut up on this part before I have it take over this post.... Here's the senator's page if you want to e-mail him over this.

The other thing that makes me sad and also angry is ignorance. I don't mean simply not understanding. I mean blatant ignorance and even disdain toward those with disabilities..... The bullies have no excuse..... Yet something I have seen and sometimes still have to remind myself, for every bully or "enemy" who doesn't treat you or your child right, there are at least 10 that do. Focus on those 10, not the one who isn't. No matter who it is, blood or not.

So see, "normal" in all reality doesn't exist. I'm not sure I would want normal anyway. If normal means in today's society we live like the Jones's but teetering on the brink of bankruptcy just to live the high life, I don't want it. If it means proving to the world my children are the best out there, I don't want it. If it means spoiling my children to the point they are "affluent" I want nothing to do with it. If it means me and my husband are so focused on making money and spending no time with our children, I don't want it. There is more I could share....

I don't want normal.

What I do want is a world of acceptance though. Children and even adults who are bullied over looks and or disabilities is unacceptable. Being refused service because of a mental or physical disability is unacceptable.

If a world like that would be "normal" than I'll accept. However, I'll take where I am. Yeah, you heard me right. There will be days I hate it, there will be days I love it. Most somewhere in the middle. There are days where the sun is shining high in a cloudless sky. Others it's the darkest night where the stars aren't even seen. Yet even a few where it will feel like the worst storm has ever hit and the thunder and wind is relentless.

What I have to always remember, it's not about the "normal" it's about the journey God chose for me. I am not alone. No matter how bad some days are, I really am not.

Normal is not everything. Finding joy in the midst of wherever I am is.

Blessings! 
~ Special Momma ~

Thank You Craniosynostosis

Wait what????

Why the heck would you thank that now? Are you crazy???

Nope....


If it wasn't for that, we would not have known what else was going on with my son..... A routine MRI, his first is what started the rest of the journey.....When he was born, it really was just beginning.  What I thought would be deja vu, God went, "Not so fast!"
Little did I know..... I get the feeling that craniosynostosis surgery, as hard as it is, is a breath of fresh air compared to what is coming next..... I pray I'm wrong...

"Only those who will risk going too far can possibly find out how far one can go."
T. S. Eliot

The battle of last week I survived, better than I thought I would. I'm still taking it all in.... Surveying what is left and what is around me.

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I am sitting here looking back on the last week and how crazy it was.... Thinking about what all was said, what it all means and what is next. In June my son will be facing another surgery. Almost a year after his last major one, another one is breathing into our faces.

This one is called a chiari decompression with laminectomy and duraplasty. That's the medical term. What that is generally is a procedure where they take out and shave down bone and other material surgery at the base of the brain and top of the spinal cord, it's a delicate surgery.... Just inside the covering of the brain and spinal cord...... It is to allow the CSF fluid to flow freely. Right now his fluid has areas that are tight. It is also the cause of the fluid filled cyst in his spinal cord called a syrinx. That is the hope anyway. There are children who only need this once and others that need it much more....

If allowed to continue in this fashion, he would decline greatly, which is why the surgery is needed. This is not what he had last July in Dallas. That was a posterior vault with suboppicpital decompression. That decompression just bought us time.... The vault helps to expand the skull to allow brain growth.


May I be ready for the next battle..... As long as I'm growing, learning and leaning on God and those close to me, that's how we get through. I have an army with me.

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I know we have a lot of prayer warriors. I wish it was easier to focus on them instead of those who I thought would stick with us, no matter what..... Pray for me on that.... Family isn't always blood, I'll say that. I know too that I think it's not me that's my son's biggest blessing, it's his sister. She is so protective of him! Her journey is similar but my son's is also totally different....

May I remember this:
"I actually am humbled when God uses me to go through a struggle because I know that I am going through this so I can help others down the road.

It is not easy.
It is hard.
It is uncomfortable.
It is painful.
It is scary."
~ Patty Myers ~

Two gemstones proving to be rare yet uniquely different. It is scary though not knowing what will be done.... What will they face? How? When? Will they survive to the other side? How will they take the battle scars as they get them?

"Courage is not the absence of fear. Courageous people do feel fear, but they are able to manage and overcome their fear so that it does not stop them taking action. They often use the fear to ensure that they are not overly-confident and that they take the appropriate actions."
~ Unknown ~

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“Maybe it’s not about the happy ending. Maybe it’s about the story.”

~ Author Unknown ~


Blessings!
~ Special Momma ~