Tag Archives: undiagnosed

Hey you, yes YOU, you’re awesome!

Big sister showing love for her brother :)

Big sister showing love for her brother 🙂

Rare Disease Day is winding down, but one thing that isn’t, is our gratitude.  Just a quick post to thank each and every one of you who visited the site, read our posts, clicked around to other posts, shared the blog on facebook, changed your facebook profile/cover picture…the support is truly overwhelming.  Our friends and family never cease to amaze me. I tried to ‘like’ or comment on every single share or picture change, but I honestly lost track, so if I missed you, I’m sorry, but I do thank you from the bottom of my heart! Joseph and I BOTH thank you!

I really hope this doesn’t start to sound old or fake, but we really are so very grateful to you all for sharing our story.  We think Braxton is amazing, but we’re his parents and we’re supposed to, so to know YOU think he’s amazing too, well that just warms our heart.

Continue spreading the word, because Braxton has so much to teach the world.  Destined for greatness.

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This blog on our lives – Dad’s thoughts

I very rarely get on here to post my own personal opinions about certain subjects.  I normally let Vanessa do the talking as she is a much better writer than myself.  I can’t begin to thank you enough for showing interest in our son.  I will admit that it is hard to explain to people what is wrong with my son when I feel that there is nothing wrong.  The kid smiles, rarely cries, and is so motivated to learn new things that I don’t see his age, but rather his progress.  This is my first child.  So therefore everything he has done is a blessing.  The kid could barely crawl and now this dude is in the kitchen climbing up the pantry shelves trying to get candy.  Ok, so maybe that last little bit was a lie, but you get my point.  Back to the reason I am writing this blog.  I have seen such a HUGE improvement with Vanessa.  Not at all saying that she was crazy before, well… let’s not get into that PARTICULAR subject haha.  But, I honestly see an improvement on her outlook.  We can turn this unexpected reality into a blessing that no person could have ever imagined.  Her ability to reach out and help other people has just blown me away.   Her knowledge continues to grow on all of Braxton’s conditions.  I feel that I need to my handy dandy notebook around when she talks just in case there is a quiz later on this sermon.  HAHA.  I really mean it when I say thank you to everyone who reads and comments on this blog.  I know she is one dedicated person, especially to my son.  When she was breast feeding she would wake up every 4 hours to pump just so he had the proper nutrition.  This went on for over 9 months.  I was PRAYING for the day that she would be able to sleep longer than 3-4 hours.  She is similar to me in the fact that when we don’t have much sleep and we are hungry…well…Godzilla seems to come out in us and we attack the city.  😀 So when this blog came around I was all for it.  I know her being able to release her emotions and concerns has helped a lot because everyone needs to find some way to release their feelings.  This blended diet has been the best thing for Braxton which proves that formula is not always the best thing for a child.  I recommend it to anyone who is having problems feeding their children without throwing up.  I used to get an evil eye from people that would stare at my son while i feed him with a syringe.  I wanted to stand up and yell out “What are you looking at you ignorant MF!!”  But, then I realized that some people were never taught proper manners and are naive to think that feeding through a tube is so “special.” I honestly am all for the tube.  I think that it is a great thing.  I find out too that this is not uncommon either.   We have gone to meetings where the families talk about losing their son at 4-6 years old from an undiagnosed syndrome. 4-6 years old!!  That is horrible!  I can’t even begin to imagine their pain.  So if my son needs to be feed through a tube for all to see then so be it.  I am finding that is could be much worse so in stead of focusing on the negative, I need to focus on the positive. The kid laughs, smiles, and tolerates more than the average kid and I am proud to say that I am his father.  I fear him going to school and being teased about whatever his condition may be.  Hopefully the tube is out by then, but who knows.  I know his hearing loss is probably from my side of the family as I had hearing problems as a child also.  I know one thing tho, music is in his blood.  As son as I start to play some melody for him on piano he will stop, look, listen, and fall asleep.  I keep getting way off topic which is a very common thing for me.  I apologize.  So with all being said I appreciate all of you guys.  Some of you are old high school friends of mine and some of you are people I have never met.  All I know is that you guys have given Vanessa the strength to carry on in a normal happy life.  I appreciate that and will continue to do anything I can to help our family live as “normal” of a life as possible.  Now that I said that I don’t mean that.  About the “normal” thing.  IF anyone knows me then they know that I am not normal LOL. I just pray that we live the lives that God planned for us to.  There is a reason behind everything even if we don’t see the miracle yet.  So thank you and I hope you continue to keep up to date with these blogs.

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Jumping for Joy!

I’m happy to announce some EXTREMELY exciting news!!!!

This morning I got a call from our geneticist’s office regarding our insurance authorization for the Exome Sequencing….

Insurance APPROVED our request!! Our insurance is going to cover the cost of Exome Sequencing and our out-of-pocket expense is ZERO!!

Fortunately, (but unfortunately ? ) our deductible has been met and our out-of-pocket maximum has also been reached so we won’t have anything extra to pay to have this much needed test.   What an amazing blessing and early Christmas present for us! I am beyond words excited. If I could do backflips, I would have been doing them all day!

LoveI was sitting at my desk at work frustrated with our GI doctor for not calling me back and at my wits end trying to figure out what else I can do for Brax’s vomiting when I got the call…Immediately I felt the tears well up and start to fall down my face.  Tears of JOY! Thank you, thank you, thank you ALL so much for your prayers and well wishes! God has been so good to us and continues to bless us along this journey.  We go next week to have blood drawn and sent off and then it will take about 5-6 months to get the results. Hopefully, this finally gives us a diagnosis and the answers that we need.  Just another step on the journey, but it’s such an important one and I’m sooo thankful we have the opportunity…

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Adjusting to Our New Normal

Well it seems as though I’ve officially been inducted to the “Parents of Special Needs Kids” club. A friend of mine recently sent me the poem “Welcome to Holland” as we were discussing adjusting to our situations with our children.  When I went to find the poem later, I came across a ton of other websites and blogs that talked about it, some good, some bad.  Seems as though it’s the go-to “it sucks, but it’s going to be ok” inspirational message for new parents of special needs kids.

If you aren’t familiar with the poem, here ya go:

Welcome to Holland By Emily Perl Kingsley  [Originally posted here]

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

 

Beautiful sentiments expressed by the author and I think it definitely gets the point across for people who do not understand the special needs world.  It does seem odd that it is so often passed around in the special needs world when the intended audience was for parents of “typical” children to give them an idea of what it was like to raise a child with special needs.  Of course it skips all of the heartache and havoc parents so often face as they come to terms with their “new normal,” but even then, it is still a reminder that it is not at all as bad as you think…well, some days yes, but most days it’s not.  While looking for the poem I came across a blogger with a different sentiment.  Dana Nieder’s blog Uncommon Sense is really amazing overall.  As a special needs parent I can appreciate her brutal honesty in some of her posts and I thoroughly enjoy her sarcastic sense of humor.  She wrote a response to “Welcome to Holland” which is geared more toward parents of special needs and expresses the nitty gritty that the original poem left out.  Again, I feel as though the original wasn’t truly intended for the parents living it, and Dana addresses that.

 

Here is Dana’s “Amsterdam International

In the special needs world, there is a poem (essay? whatever.) called “Welcome to Holland.”  It is supposed to explain what it’s like to have a child with special needs.  It’s short and sweet.  

It skips everything.

While “Welcome to Holland” has a place, I used to hate it.  It skipped over all of the agony of having a child with special needs and went right to the happy ending.  

The raw, painful, confusing entry into Holland was just glossed over.  And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written “Welcome to Holland”, I would have included the terrible entry time.  And it would sound like this:

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything—you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off. 

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization—your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones. 

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all. 


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.) 

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing. 

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up—you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious—how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months. 

But you will leave the airport. You will. 

And as you learn more about Holland, and see how much it has to offer, you will grow to love it. 

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved

———-

I found both of these a few weeks ago and wanted to write about them, but I was so filled with emotion I couldn’t get my head straight.  I can 100% wholeheartedly relate to Dana’s post and have experienced everything she talked about.  If only it were as easy as the EPK poem to find yourself on this journey and decide then and there that “this sucks, but it’s going to be ok.” For anyone who has ever wanted to ask how we do it or what it’s like, Dana’s post gives you the best idea.  We were completely lost in the beginning and ran through every emotion possible.  Thrilled with the arrival of our son, but angry with the doctors for not being able to tell us why they couldn’t send us home.  We were just all of a sudden thrown into new territory and it was sink or swim from the beginning.  There are countless appointments with doctors and every therapy available and some days/weeks/months are harder than others, but this is “normal” for us now.  Somehow we manage to get through it, because it’s what is best for Braxton.  Seeing his progress is a visual confirmation for us that we are doing right by him and a reminder that just because this isn’t what we planned, we enjoy it just the same, if not more.

At this point, I think we’ve finally adjusted to Holland, but there are still some days where I find myself wandering back through that airport, sometimes to remind myself how far we’ve come, but sometimes because something new has been thrown at us and it’s like we’re there all over again.  The path to acceptance is not at all easy, but we’ve been fortunate enough to have so many people on our side to help us through it all.  I think the last piece of it all was finally finding that support group.  Braxton has been doing so well and continues to succeed in most of his therapy goals, and I think I finally realized that “Hey, everything really is going to be ok” and that it was ok to reign in some of my worry. Mothers worry. All the time. There’s no changing that, but it was like I could finally breathe and didn’t have to worry what bad news the doctors had for us.  Being able to step back and take a deep breath finally allowed me the clarity to realize that Braxton was ok, and now it was time to take care of mom.  I’m truly thankful that I decided to get involved with U.R. Our Hope.  That parent connection and support has been so valuable to me, and has helped me to finally find a place of acceptance.  This is our life now, and I’m ok with that. More than ok, I truly enjoy every part of it.

This smiling face makes it all worthwhile…

Happy Baby

Happy Baby

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