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Why would He do this to me?

1 Feb

“We love the things we love for what they are.”

― Robert Frost

HPIM0597

I really should have put this picture at the beginning of my story. This is Kekoa and me in the background. Yes, I was about to cry when it was taken. The picture accurately emphasizes and portrays everything that is me. When I look at it I see someone who looks absolutely terrified of the reality that has just come out of her body. Why God would choose to give someone like this a special needs child is beyond me.

I mean look at me.

I was a wreck and he was fine.

When we got home from the hospital my husband loaded the pictures from the delivery onto the computer. He pulled up this one and burst out laughing. “Look at your face! You look like you are convinced that the nurse is really a child predator and is about to run off with your baby.”

I came over and looked down at the computer screen. Yep. That is exactly what I was thinking. “Don’t laugh. I just love him so much.” I try to explain very near the brink of tears. How can he not understand? I mean this little person just came OUT OF MY BODY! I made this little guy and he is perfect. It all just became so real. When they’re in your body it’s just a faint idea. Especially when it’s your first. Once they actually come out it’s a whole new ball game.

I think I look the way I do here for a couple of reasons.

First of all, I was totally mortified by the whole child bearing experience. The gush of body fluids, squishy stuff and baby from my body was beyond embarrassing.

How would my husband ever look at me the same?

Second, I really hadn’t given the whole idea of baby = with you the rest of your life, a sufficient amount of contemplation. I just wanted a baby. But once I looked into his eyes and felt a kind of love that I had never experienced before, I knew that I was in trouble. My heart felt like it was bursting with love and breaking with fear all at the same time and either way I looked at it I was in danger of literally loving this little guy to death.

Once the nurse placed him on my chest, cleaned him off, and then took him away to the warmer to wrap him up and snap this picture I was totally and completely smitten.

I also started feeling other things that I had never felt before. A fierce protection of my little boy that was almost crushing when the nurse took him from my arms.

In the picture I am looking at the nurse like “OMG you are totally going to break him. I do not trust you at all. Give him back. Give him back before I cry.”

In what world does it make sense for Life to give this kind of mom a special needs child? I couldn’t handle the thought of raising this little guy, who was completely normal.

Can you imagine the picture of me after I found out that Oli was blind?

Or maybe this picture explains completely why I was given a special needs child…

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Stop picking her apart!

1 Feb

“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.

Delicious Ambiguity.”

― Gilda Radner

Driving home from Dr. Hyun’s office that day my brain felt like it had shifted into overdrive. I was calling all of the doctor offices and the medical center trying to schedule Oli for her appointments, MRI and lab draw. Flipping through my appointment calendar I remembered that I also had to call Nevada Early Intervention Services and schedule an appointment with them. NEIS serves the special needs children in the Las Vegas and surrounding areas that are under the age of 3. After age 3 the children transition into the school district.

No one had recommended that I call NEIS. I just happened to remember referring some of my patients to them while reading off their discharge instructions.

I’m thankful that I knew of them and knew that they might be able to offer us some help. To be honest, I didn’t know exactly what they did. I just knew that when I had a patient going home that might have some developmental delays we told them to call NEIS.

A woman from the front office answered my call and set up an evaluation for the following week. She told me to bring Oliana to the appointment and they would look at her and decide which services she would benefit from.

I hung up the phone and was proud of myself for finally doing something for her instead of just worrying about all of the things that I couldn’t do.

Later that day a woman I worked with contacted me and offered to come out to my house to look at Oli. She was a neonatal nurse practitioner in the NICU I worked at and she also occasionally worked with the pediatric genetic doctor in Las Vegas. She told me that if she came out and did her own evaluation of Oli she might be able to submit it to the doctor and get her in earlier than the 6-9 months that we were told. I was more than happy to comply.

When she came out to the house she began the physical exam. She laid Oli down on a small flowered blanket and began measuring every inch of her body with a little fabric measuring tape. I was not prepared for the onslaught of abnormalities that were revealed to me during that evaluation.

Her little ears were too floppy.

Her eyes were too far apart.

Her eye brows were not level.

The bridge of her petite nose was too wide.

Her nipples were too far apart.

The space between her delicate fingers was too wide. (What? Why does that even matter?)

Her peach fuzz covered head was too small.

Her physical tone was too weak.

The list went on and on….

I just wanted to scream at her.

Stop! Stop! I don’t want to hear any more!

This is my child! My perfect little angel and you are picking her apart!

What child could possibly measure perfectly according to your standards?

Please, just stop!

Leave my baby alone!

But she didn’t stop because I couldn’t yell any of those things. I just let her continue until she was finished and I was completely defeated.

Then she got into her car and left and I picked Oli up and cried.

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The doctors opinion

1 Feb

“One person’s craziness is another person’s reality.”

― Tim Burton

Continuing on our scavenger hunt, the woman from the blind foundation gave us another name. A pediatricians name. Oli had already seen one since leaving the hospital, but we were not impressed.

The opthamologist told us to make sure that Oli’s pediatrician drew labs to check her pituitary gland. She told us that she knew kids with microphthalmia commonly had abnormal pituitary glands and that it was imperative to check the labs.

Her first pediatrician just blew me off with an annoyed look when I asked for the labs to be drawn. Apparently this was a common attitude with this particular group of pediatricians.

Don’t we need to check her pituitary labs to make sure she doesn’t need medication? Don’t we need to check her growth hormone?

No. We don’t need to check them right now. We’ll just watch her and see what happens.

Watch and see what happens? She’s not a science experiment or an action movie! I don’t want to just watch and see what happens! I want answers!

We will just wait until after you see the geneticist and see what she says. I’ll wait for her recommendations.

There was only one pediatric genetic doctor for the entire Las Vegas valley. The waiting list to see her was 6-9 months long.

Don’t you think we at least need to do an MRI to take a better look at her brain? Don’t you need to draw chromosomes? I’m sure the geneticist will want chromosomes drawn. What about her kidneys? The doctors at the hospital said that you should refer us to recheck her kidneys.

No. I’m not going to order any tests.

By this point she was really annoyed with me for questioning her. She knew, that I knew, that she was uncomfortable taking care of Oli. She had no idea what to do for her.

I left that appointment feeling frustrated and bewildered that a doctor wouldn’t want to look further into what was going on with my daughter. Why didn’t she want to help her? Now what?

Then we went to the open house at the blind foundation and received the name of the perfect pediatrician for us and for Oli.

Dr. Rosemary Hyun.

The day of Oli’s first appointment she came in the room and sat down.

How are you doing?

(You can guess my answer.)

I’m fine. Thank you.

I’m glad that you were able to meet another family with a child like Oliana.

Yes. The mother of the boy gave us your name. We weren’t very comfortable with Oli continuing to see the first pediatrician we scheduled.

I’m glad you’re here. Let me just take a quick look at her and then we will discuss what tests need to be ordered and if there are any additional things you want ordered.

She was asking my opinion? Really?

I was so surprised. This doctor was actually considering what we needed as her parents. She was thinking like a parent herself. What would she want to know if it was her child. I probably don’t even need to say this but, for a doctor, this quality is very rare.

After she looked over Oli carefully she began to write down a list of tests and labs to be ordered. She asked us if we needed anything else. Then she handed us the slip of paper detailing everything that she had ordered.

Cardiologist appointment for an echo.

Endocrinologist appointment for labs.

Urologist appointment for her kidneys.

MRI of her brain.

Lab appointment to draw her chromosomes.

A follow up appointment with her.

A referral for the geneticist.

It seemed like an overwhelming amount of appointments. Especially, since I was used to seeing the doctor only once every 3-6 months with my son.

But I needed answers.

As I walked out of her office a startling realization hit me.

Was this how the families of my patients in the NICU felt when I sent them home?

When I discharged them from the hospital with a list of appointments, doctor names, medications, medical equipment, and specific feeding times.

Was this how they felt when I carried their baby through the sliding glass doors of the hospital, handed them the car seat and 15 plastic hospital bags containing all of the things they needed to keep their child alive and said “Good luck”!

My experience with Oli began to give me a whole different perspective and a new found respect for the families of my NICU babies.

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25 Reasons You Know You’re A Special Needs Parent

31 Jan

I recently read a post on the Scary Mommy blog entitled 25 reasons why you know you’re a parent.

I would to like to add a list of 25 reasons you know you’re a special needs parent:

1.You invite random strangers (new therapists) into your house and before they get there, tell your children to quickly throw their crap around the room so it doesn’t appear “too clean” because you don’t want the therapists to expect a clean house every time they visit.

2.Meeting a great therapist is like a 12 year old girl meeting a celebrity. There are tears, lots of hugs and phrases spoken like “you’re so cool”. You also make sure you to tell them multiple times throughout a session how amazing they are and you are thrilled to have finally met one.

3.Racing through the grocery store, hollering please stop biting my face, pushing a big stroller and a little cart, shoving gluten free snacks in your child’s hands, while you watch them slowly go from quiet whining to total combustion, still managing to remember to grab deodorant (since you’ve been out for two days and have been using your husbands), and NOT cry when the checkout lady insists on talking to you about her grandson and how well behaved he is.

4.Sitting in a doctor’s office for 3 hours at least a few times a month doesn’t seem abnormal at all and now you just remember to pack every single portable electronic device in your house, a picnic basket full of snacks and also a full meal because you never know when 3 hours may turn into 5 or 6.

5.When you have to wait anywhere else with your other kids they are always the best behaved.

6.The sentence “Her eye is crooked again” is not spoken by the sci-fi character in the TV.

7.The sentence “Her eye fell out” is not from the horror movie.

8.A diaper bag is required for at least 5 years. It’s probably the same bag purchased when your child was born.

9.The medicine cabinet in your house full of syringes, liquids, and pills does not belong to a drug addict or your 90 year old grandmother.

10.You have strange swinging contraptions hanging from the ceiling and huge jungle gym equipment in your living room.

11.You go to the gym not to get fit, but simply to get out of the house. Then spend the entire time you are there checking your Facebook and bursting into fits of crazed laughter because you have “escaped”.

12.You believe that all baby items should come super-sized so you don’t have to spend a gazillion dollars on special order items that are the same ones they sell at Walmart only bigger.

13.Driving an hour and a half for a 25 minute appointment does not seem like a waste of time.

14.An hour and a half drive is actually like a mini vacation.

15.You start to actually love driving because when your kids are crying you can say “Sorry can’t get to you. Mommy’s driving” and not feel bad.

16.You celebrate pooping on the potty and reward it with high fives, good jobs, kisses, and candy. (Oh wait. That was also my 2 year old)

17.You don’t even bat an eye anymore when you check out at the pharmacy and the bill is $400. You just smile sweetly at the cashier and say “Of course. Do you accept credit?”

18.The wrong look from a stranger in the direction of your child causes you to snort, snarl, and foam at the mouth. You have the world’s best stink eye.

19.Sometimes punching people in the face just makes sense to you.

20.If someone overheard your conversation with your husband while on a dinner date they would think you were from the CIA and speaking in code. blah blah… IEP. . . blah blah. . .ARD. . .blah blah… MMHR. . .blah blah. . . DARS. . .

21.LOL! That last one was a joke. You don’t go to restaurants!! And you definitely don’t go there with your husband!

22.Dates include wearing your best flannel pajamas, renting a movie on TV and falling asleep during the opening credits.

23.Poop on the walls is not an emergency.

24.You are somewhat proud of the title “that mom”.

25.You absolutely hate it when people ask you “what is your child’s diagnosis?” and are thinking of just handing out laminated business cards because it would just be so much easier than explaining it. And you forget how to spell the damn word half the time so having it written down would be nice. Plus they’d be handy in those time when someone has the nerve to look at your child wrong. While snarling, spitting and growling you could also hand them a business card.

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My booger awards.

30 Jan

“Sometimes crying or laughing are the only options left, and laughing feels better right now.”

― Veronica Roth, Divergent

So since I’ve recently been entered into the top 25 blog contestant on Circle of Moms (for my other blog. I am in the process of transferring all of the content from there to here.) I have been reading some of the top blogs. Seriously, there is a reason why the number one blog on there has like 8 million votes. It is hilarious!! I have absolutely no chance when it comes to these women and their humor.

But, I still really appreciate everyone who has voted for me. Keep voting!!! You never know, I could get 8 million votes too 🙂 Plus, I just like the thought of winning something other than the booger off my 2 year olds finger. Seriously…she presents it to me like an award. “Here mommy! Look what I have for you!” She hands it to me like it’s one of her prized possessions.

These mom blogs are about how funny it is raising kids. How, ultimately, you do get a little crazy and find yourself doing things that you never thought you’d do. Like responding “Thank you” when someone hands you a booger.

I find it interesting that there are not many funny blogs about raising a special needs child. Oh, they’re out there I’m sure and if you know of one please list it in the comments below or on facebook because I would love to read it.

I wonder if it is because no one wants to associate humor with special needs.

There is nothing funny about a child or an adult that has a disability.

And it’s really not funny in the beginning when you can’t even seem to drag yourself out of bed in the morning because the very thought of the weight now on your shoulders seems like it will crush you.

I don’t think I really truly laughed until about a year ago. I was so caught up in all that I couldn’t do and all that she wouldn’t do that I forgot to laugh and ultimately I forgot to live.

Now I see that those thoughts and sorrow were slowly killing me and if I kept on the path that I was on I was going to die a slow and agonizing death.

Now I see that I just took it all for granted and was so deeply entrenched in self pity that I couldn’t appreciate the wonderful life that I had been given.

Now I see that it is possible to move past all of those things and learn to live again and subsequently learn to laugh again.

I’ve missed that.

I’ve missed being able to laugh at myself.

It really can be funny.

Having children in and of itself is a funny journey, but having a child with special needs has it’s own unique humor. One of my friends on facebook, Jill, posts about the funny things her 6 year old daughter says.

Ella has anophthalmia and makes jokes about her blindness and prosthetic eyes. Her mom posts stories about the humor in their life. Like her whole family panicking in a power outage at night, but little Ella remaining calm and leading her younger brother to the bathroom in the darkness grumbling under her breath that she “doesn’t see what the big deal is?” I love stories like that!! (Jill, I hope you don’t mind me using you and Ella as an example.)

Yes, it can be sad sometimes, but it can also be hilarious and crazy in a good way.

Sometimes it’s okay to laugh and it’s okay to talk about the funny parts. I’m glad I realize that now and I’m glad that I remembered what it’s like to be funny.

Really all that I want to accomplish with this blog is to help the me’s from 5 years ago out there in the world stumbling along in pain trying to figure this whole mess out. If I can reach just one person who knows what I’m talking about and make them feel just a little bit less alone, then I have done the job that I set out to do.

Oh…and somehow writing about my craziness in all it’s glory amuses me.

If you want to share my blog and you feel that it may reach someone and help them, please share it. Or if you just like it and want to share it, please do.

It’s not about the amount of followers I get, or how many likes I get on Facebook or winning any awards (although all of those things are very nice and I do really appreciate them) (Vote for me!:)

It’s just about telling my story, healing through telling it, and maybe helping somebody else.

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Will she forgive me?

30 Jan

“The truth is, unless you let go, unless you forgive yourself, unless you forgive the situation, unless you realize that the situation is over, you cannot move forward.”

― Steve Maraboli, Life, the Truth, and Being Free

I wasted so much time at the beginning of Oliana’s life wishing and praying that things would change.

I wished that we could find the right doctor for her. I wished that she had been born without a disability. I wished it was easier.

I prayed that God would let her have some vision and that nothing else was wrong with her. I prayed that she would not be significantly delayed.

I prayed that I could just accept her as she was.

One by one, as these wishes failed to come true and my prayers were left unanswered, I became angry.
I was angry at my friends and family for not understanding what I was going through. I was angry at the doctors for continuing to give me bad news. I was angry at God for thinking that I could handle this.

I was so angry at God.

What did I do to deserve this?

I felt like I was being punished.

Much later I realized that I was feeling sorry for myself. I was being selfish and turning Oliana’s disability around and making it about me.

The angrier I became, the more I began to detach myself. I started pushing everyone who cared about me away.

I would often think, why can’t they just understand how hard this is?

As we continued to receive disheartening news about Oliana’s condition, I spiraled deeper and deeper into a vortex of anger and despair.

The things I felt during those dark days are very hard for me to admit to now. I wanted to be okay with who she was back then. But the truth is, I just wasn’t.

I know that I am going to have a very hard time as my children grow older and want to read this. I never want them to look at me and think that I didn’t love Oli because I wanted to change her. These two things seem like they can’t co-exist but, in my life they did. I did want to change her. I also loved her. It just wasn’t easy.

As I continue to write this, the hardest questions of all are:

How will I read this to Oli?

Will she understand?

Will she forgive me?

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10 Things my mother forgot to tell me about being a mom

30 Jan

1. I will never eat a hot meal again.

2. Strike that. I will never eat a meal again. I will be forced to eat random snacks I find at the bottom of my purse or in the car because I will continually be too busy and forget to eat.

3. I will be expected to be available at all times during my child’s shower to adjust the temperature with the faucet because it is always too hot or too cold and can change multiple times during a 10 minute shower. (Seriously when do they learn to adjust the temperature themselves?)

4. The main sentences in my house will be the following:

• Stop picking your nose.
• Don’t stick your toy in that.
• You need to poop INSIDE the potty.
• No you can’t build a rocket ship out of crap in the random crap drawer.
• Stop picking your nose. (I say that one a lot)
• Eat your dinner.
• Sit down and eat your dinner.
• Stop crying and eat your dinner.
• No I did not make that to torture you.

6. If I get rid of the one toy that they haven’t play with in 2 years that is the one toy they will ask me about the day after I get rid of it. And then I will have to go to the store and spend $50 replacing it because I crumble like gluten-free bread under my children’s guilt trips.

7. Bedtime is actually hours after I put them in bed.

8. “Go to bed and stay there” means absolutely nothing in my children’s language. I may as well be speaking Chinese after they hear the words “It’s bedtime”

9. There are such days as Pee on the floor day. Where everyone in my house somehow manages to pee on the floor. Including the cat.

10. I will never pee or shower alone again. Someone will always barge in, bring their drama, expect me to referee from the shower stall, find a toy behind the toilet, need juice, a snack, fall down, cry, have to pee, or have a poop emergency while I am using the bathroom. Including the cat.

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As long as nothing else is wrong…

29 Jan

“Prayer is not asking. It is a longing of the soul. It is daily admission of one’s weakness. It is better in prayer to have a heart without words than words without a heart.”

― Mahatma Gandhi

As we left the Nevada Blind Children’s Foundation that day I felt a little less alone. I finally met someone who knew what microphthalmia was. I still didn’t know what this would mean to my daughter but, I began to have that tiny seed of hope again.

The woman from the foundation told me that even though her son had bilateral microphthalmia and the doctors told them that he would be totally blind, he was actually able to see a little bit of red light. So maybe that was a possibility for Oli. Maybe she wouldn’t live in complete and total darkness. Maybe if I began to pray hard enough she would be given the gift of having some kind of light perception.

I began to once again direct my prayers toward Oliana having vision.

I didn’t realize then, that praying for someone to be given something, is not really how the whole prayer thing works. Although I was praying for her to have some sight, part of me was really praying for an easier life for myself. If she could see something, anything really, it would probably make this whole thing easier.

If she could see something she wouldn’t be among the small percentage of people who are totally blind. That small percentage that I had read about, many of whom are illiterate and unemployed. And if she wasn’t completely blind, I could probably still force her to fit into my little box of perfection.

As long as nothing else was wrong.

Many times I also prayed “God if she is going to be blind, let her just be blind. Please don’t let anything else be wrong.”

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She asked if she could see my baby.

29 Jan

“When someone is crying, of course, the noble thing to do is to comfort them. But if someone is trying to hide their tears, it may also be noble to pretend you do not notice them.”

― Lemony Snicket, Horseradish: Bitter Truths You Can’t Avoid

Seth and I decided to go to the Nevada Blind Children’s Foundation open house. I was nervous about taking Oli out anywhere besides the doctor. I didn’t want people staring at her or asking me questions about her eyes. I didn’t want to have to start explaining my baby to people. She was only a week old.

We had to make the trip though. We didn’t have any other place to go. I needed to talk to another parent about what it was like to raise a blind child.

The open house was in Las Vegas. I tried to prepare myself on the hour long drive there. I didn’t want a lot of people looking at her or touching her. She was so small and I felt that fierce need to protect her like I had my son. I brought my baby sling to put her in.

I brought it because I knew that it was the best way to hide her from the world.

If I could only hide her for a little while longer… maybe eventually I would be ready for the world to meet her. Right now, I just wanted to get in, ask my questions, learn the secrete language or hand shake or whatever it was that I needed to learn in order to live this life and function normally.

I really thought that these people would give me the magical keys to my new life. I thought they would open the door for me. After all I was now part of their club. I had a child that was blind. I thought they would just sit me down and explain it all.

It didn’t happen that way.

They were very nice. They told me their son was 3 and had bilateral microphthalmia. I remember that I really wanted to meet him. I wanted to be able to picture what Oli would be like in 3 years. I wanted to see what his eyes looked like. I thought that because Oli had the same condition as him they would be very similar. I thought all kids with the same diagnosis were similar. Obviously there was so much that I didn’t know. I was disappointed when they told me that their son wasn’t there.

The mother of the little boy approached me.

“How are you doing?” she asks me.

Of course I replied, “I’m fine. Thank you.”

“Can I see her?” she startles me with her question.

Oh my God. The moment of truth. Someone wanted to look at her. At least this was someone who was familiar with her condition. I felt a tiny bit more secure as I pulled the fabric back from her face. She peaked inside the sling.

“She’s beautiful. Congratulations.” she smiles.

Congratulations?

I don’t think anyone had said those words since we found out about her eyes.

As tears welled up in my eyes the next words out of my mouth were spoken with complete honesty and appreciation for that one word. Congratulations.

“Thank you.”

Thank you for reminding me that she was a baby. She was my baby despite her disabilities. I should be proud of her and people should not be afraid to congratulate me.

That word was spoken by a woman who, through her own experience, knew exactly what I needed to hear. She could sense that I was frightened about what people would say. Frightened by the way people might look at her.

She knew what I needed and that is exactly what she gave me at the moment when I needed it most.

Comfort.

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Searching for the end of the rainbow

29 Jan

“Remember, an easy question can have an easy answer. But a hard question must have a hard answer. And for the hardest questions of all, there may be no answer -except faith.” -Charles Sheffield, Brother to Dragons

We went to the opthamologist appointment 3 days after I took Oli home. This is the doctor that the hospital had recommended to us. Since this is the only suggestion we had received so far, we went.

Her name was Dr. Shin.

She was sweet and sympathetic, but she told us that she was not familiar treating microphthalmic children. She could only tell us what we already knew. Oli’s eyes were extremely small and she probably would be totally blind.

She did lead us a few more steps into the beginning of our journey by giving us two names.

One was the name of a family who also had a son with microphthalmia. This family had started a foundation called the Nevada Blind Children’s Foundation.
She told us that the foundation was having an open house in a couple of days and we should go and meet this family.

Finally! We were going to be able to talk with someone who knew what we were going through.

The other was the name of a colleague she went to school with. He was another opthamologist but, had treated kids with microphthalmia before. He was located in Los Angeles which was about 6 hours away.

I still did not know what all these people were going to do for my daughter and my head was swimming with too much information. I thought that the doctor in L.A. was going to fit my daughter with her first pair of conformers. I found out 2 months later, when we saw him, that he was just more of an expert on her eye condition. I’m still not completely sure why we needed to see him. He told us the same information that we had heard since she was born. That her eyes were extremely small. We did finally get the name of an ocularist though.

I felt like I was on a scavenger hunt. Each person we met would lead us to another person and they in turn would lead us to another. Each clue was supposed to be leading me closer to an answer.

But I never received the answer I was looking for.

A way to make her better.

I may as well have been searching for the end of the rainbow.

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