2,190 Days

It has been 2,190 days. That seems like a lot of days. However, there are some out there who have been doing this thing much longer, say for 30 years (10,950 days) or more. So our small 6 years compared to that seems pretty insignificant.

Six years ago I can remember Father Y talking to us about marriage, you know the part past the wedding day. It seems we get so hyped up about those few moments at the alter and a party afterward that planning for the days past 'The Wedding Day' are nonexistent. The world was grand, how could anything ever go astray in our future fairytale? Father Y talked to us about those days with us nodding along that we understood and would always stick to the plan; after all, that’s what people do in marriages. Right?

We did not get married until I was in my late twenties, Matt in his early thirties. It’s a great story. Planning and establishing a future were first. We were responsible. I often pick on him about this, but think about it, we met in the summer of the 96’ Olympics; we married after Y2K. There was plenty of time to work out the kinks before we were married. (I am grinning as I type this-I love to pick at Matt about the years that went by before the wedding.)

So - today we get the day together.

I want to tell you a different side to our fairytale. The part that is supposed to be ssshhhhh (private).

Last year when Ivey was born, we found that our fortress of a marriage was about to be tested in ways and means that no one can imagine-unless you have walked in our shoes. Stress can be applied to a marriage in many forms. This stress is unlike financial issues or disagreeing - the baby that was created was on the line. She was hurting. Did we cause it? You cannot conceive the depths that a ‘sick’ child will touch a marriage.

These are the days that Father Y was really talking about.

The first several days after Ivey was born I could not be alone, even when I slept. Come to think of it, I didn‘t sleep at all back then. I can remember sitting in the hospital room literally clinging to Matt. Those were dreary days.

Then someone came to visit, this was a few weeks after Ivey was born. They had our best intentions at heart, but sent fear surging through me - Matt tries to play this off, but it scared him too. We were quickly asked about our marriage. Okay. Ivey was still in the NICU, so we were leaning on one other as we sat waiting; we were together. We were informed that many (most) marriages of special needs children end in divorce. Didn’t know that and I probably could have gone without knowing that particular statistic.

Then our sweet pea came home, which was much different from the boys coming home from the hospital.

In a nutshell, our time was engulfed in Ivey’s medical care, trying to raise two boys in a ‘normal’ home (pretending their lives had not changed too), trying to keep the house clean, going to doctor’s visits, Matt was back at work, I was trying to raise three during the day, someone was always in our home during the day (would not change that) and there was a stranger awake in our home every night watching Ivey. A night nurse can quickly dowse any homefires that are burning. We were parents. We were friends. We were our parents’ children. We were trying to survive. There was no time for us to be husband and wife.

We went to dinner one night and stared at each other. Life was in full force, but I was in one realm - he was in another. Loving one another was not the problem. We worship each other. Marriage is founded on much more than love alone. -Who the heck was the person sitting across from me?- I think that is the instant most people make a choice. Our parents raised two very stubborn and headstrong people. Failure, and I am not talking about divorce, I am talking about a stale lifeless marriage was not an option.

We carved out a plan. Divide and conquer. I took control of Ivey’s medical events. Matt grabbed Ivey’s financial matters. We went full steam ahead. If a problem comes up, it is addressed and we try not to pull the other down with the details. This has become our way of life. Loving our family became our priority, not just surviving.

The marriage comes first.

I love being a mom. Matt loves being a dad. We once spoke about things Father Y said to us. He gave insight to loving the people who surround us, loving our parents, loving future children, but he spoke of always putting each other first. He spoke of hard times when we might want to cling to our own parents or friends - we had to make effort to cling to one another instead. Of course then we could not imagine there being a time when that could happen. Now we know. Without our marriage, none of the other will exist.

So, in the midst of the creatures we created, we honor the two people who created them. We both know that despite our current life, eventually our three babies will grow up and they will have lives of their own. We take a day, especially this day, to remember the two people who vowed to one another they would keep it together, we celebrate the people we have become, we are humbled by the obstacles we scale and we pray for the people we will be…..we are doing it together.

I could have told you some mushy story. I think this one is much better. It is a story about two people facing many obstacles, getting through them, and loving our life together.

Fun In The Sun

A little G-tube venting with help from the big brothers.

The biology in me couldn't resist the song.

As I was saying life is up and going again.

I keeping thinking back over the past months and man have times been hard. It is no lie. Things were hard, not impossible. I met a mom recently new to this parallel life I am living with my defiant special needs little girl. Wow. It makes me very humble. I do not ever want to forget what it was like being there with the new and unknown. Not to mention the feeling of where did the life I had planned go?

While you are in it, not that I am out of it yet, you don’t realize the wide range of emotions are normal. You have to do something with the emotions and hope that what you do turns into something positive. This blog is great and all, but I have not posted about the down days - when I was having a moment. It would be much to embarrassing, but those times are the reality also.

Now I think I am somewhere in the middle. Some days are great, some days okay, and some days down right stink.

For all the resources there are for Ivey, it is limited to resources for parents and what parent should do with themselves. As I said before, where do the parents fit in? Once Ivey was born, everything that I did on a normal day completely stopped, that includes my time with my husband, sons, friends, or for me. Sound selfish? Maybe. But I will challenge anyone to completely stop their lives for one week and live our routine and see where you stand. My parents love keeping the kiddos but I love it when we return and they start heading for the door. My point is - it takes time for life to begin again.

So here are the best three pieces of advice given to me:

1. If you feel like you are about to fall apart - don’t do it in front of your other children or take it out on your spouse (this can be hard to do at times). Get in you car and drive all the while screaming at the top of your lungs or crying your eyes out. We are all lucky that Matt’s head is still attached to his shoulders for all the times I have bitten it off.

2. Let others HELP! I still have a hard time with this one. Pride is an awful thing.

3. Get up each morning and do something normal, like shower and makeup. A friend came to visit during Ivey’s extended stay at Scottish Rite. She about died when I pulled out my heels to walk around the hospital. Sometimes you just have to take the sweat pants off no matter where you are.

By the way, I have taken all three to the pool by myself. It resembled something similar to the Bermuda Triangle and I was waiting for one to disappear never to be seen again. Nevertheless, we got up the next day and tried again.

Life - Specifically - My Life

It is actually beginning again. Life. I had my doubts that it would ever be possible, for me that is.

It has taken fourteen months for Life to begin idling and slowly proceed forward. Fourteen months and one day ago, the assumptions that I had about my life were much different than they are today. Fourteen months ago my daughter entered into this world. Her new Life began; my life stopped, or so it seemed. The glass house that I lived in came shattering down around me.

My daughter was born with many medical complications that were not detected before her birth. Her resume of medical trivia is long and extensive. Her resume at one time made even the best physicians and specialists cringe at the possibilities of her life, all of which were skeptical. Fourteen months later, my daughter astonishes those same people. She beat many odds and thrives in a world that she was never to participate. She, like all children, is a miracle. My daughter is what remains when there are no assumptions. She is faith at its best.

In the race for my daughter’s Life, I found myself questioning whether or not I would ever enjoy many of the wonders of Life ever again, where exactly did I fit in the puzzle? Life became dependant on medical jargon and fear of my daughter’s diagnosis. It was as if I existed only to provide medical care to my daughter. So I set out to find my Life. I began gluing shards of glass back together, but the pieces were always chipped beyond repair. I was trying to make Life what it was fourteen months and one day ago; Life before a special needs child with anophthalmia, a trach, feeding tube, a cleft lip/palate, a heart defect, and mental and physical disabilities. I kept looking for the old me to submerge from the rubble. Then the picture became very clear, the pieces were not meant to fit together. The old me no longer existed.

Just as my daughter is feeling her way around her world, so am I. I am learning that as hard as it is to let go of the past, the person I was, I must accept who I am now. Acceptance of change is a very big pill to swallow. My Life is challenging, but it is far from boring. Fourteen months later my daughter’s life is in full swing and my own life is beginning with a new foundation. There is no blueprint. My daughter has taught me through faith anything is possible, so is Life.

Under The Sea

at the Georgia Aquarium

Whale Shark

I came home one afternoon to these amazing books sitting at my door. Look closely and you will see that each book is in braille. Ivey has a guardian angel that drops in from time to time. Her name is Beth. She has a heart the size of the seas and just as full. I have not been able to properly thank her for the books, so I want her to know that I am so very appreciative of the books and for everthing else that she does for our family.



I saved the best for last - The Greatest Dad in the World.

Paris Who???

It is great to get out and about and have people tell me how pretty Ivey looks and how excited they are at all her new accomplishments, even from some I do not know very well, or for that matter, some I have never met. For example, I was heading into a store about a month ago looking for a birthday gift for one of the boy’s friends. A lady followed me into the store; no actually, she was following Ivey. She asked me if I was Ivey’s mom and if this was precious Ivey. The sweet lady wanted to meet Ivey because she has been praying for her. A short time into her conversation with Ivey she looked up at me and said, “I assumed that the baby was Ivey.” In short, their aren’t that many little girls being hauled around in a stroller along with a blue feeding pump bag, a suction machine in a green bag, a diaper bag, two blonde boys in tow, and most likely a stick horse or something that has to do with horses. Oh yeah, and a mom carrying almost all of it on her shoulders, while trying to hold the two boys hands and push the stroller. As you can see, we are very discreet people amidst Ivey’s stardom.

At the same time, I thoroughly lavish in bragging on my little girl. For the first time, I feel like I am not hiding her struggles or downplaying hard days. Life is good. Her life is better. And, I am becoming increasingly aware that more people than I realized keep up with Ivey through her blog. I am amazed each day our community and beyond, love Ivey, cheer for her and want to be part of her life, even if it is via a computer screen. I just wanted to say our family is grateful. Thank You.

MAPS (Microthalmia Anophthalmia Parent Support)

I have mentioned many times that I have met several families who have children with anophthalmia via an internet site. Well, a couple of us moms, nine to be exact, decided to take things a step forward. We are creating a new site dedicated to providing parental support to families with children with anophthalmia (no eyes) or microthalmia (small eyes). The site is up and running now; however, it is still in the beginning stages. For now there are only tidbits of information.

Go ahead and take a peak at it. You can also meet my friend Megan and read of a terrific story about her daughter Ava on the Family Spotlight Page.

We plan to incorporate many great resources. We also aim to let other parents know - it's okay - they are not ALONE in this world. I can tell you this, finding myself and our family in this new world with Ivey is isolating. No matter how much support our family has, no one can truly relate - period. Isolation. Although I can not call up my best friend, a neighbor or my mom to ask advice about Ivey, I have found a wonderful group of women and their families whom are spread throughout the US, Canada and beyond. Thank God for the internet.

So head on over and take that peak. Check back occasionally to read about other astounding children. The main goal-if by chance or God- you hear of or meet another family with a child with anophthalmia or microthalmia, please send them to the site. They will need it.
Thanks Guys!!!!

~~~~CLICK ON THE MAPS LINK ON THE SIDEBAR~~~~~~~~

SINK OR SWIM?

Here she is...ROLLING.

Ivey had her GI appointment yesterday. She is weighing in at almost 14 pounds. That's two pounds since her last visit. Now that my little doll baby is more active we have to do something about her being on her feeding pump so often during the day. So the schedule is being revised. Once upon a time I posted Ivey's military style daily routine, which did not include her brothers, her parents, or any kind of 'fun' activity, I will direct you back to it if you are interested (A Day In The Life). Here we are tweaking and manipulating schedules yet again.

The plan is to drop from 4 bolus feeds down to 3 bolus feeds per day. The kicker is to drop feedings from 2 hours per feed down to 1 hour per feed, while maintaining a certain volume of formula. By doing this, Ivey will have more time to be a real 1year old. Ivey will still be imprisoned to that blinking monotone machine, but for only three hours total during the day, not the 6 hours she was doing yesterday. YiPpE! HuRrAy!

Ivey will still have a continual night feeds. Each night she is plugged into her feeding pump for 10 straight hours. As you can imagine, being connected to a machine via a tube is pretty restrictive, that is why we are trying to put the most volume of formula into her at night.

Ivey's GI doctor and I were talking yesterday at her appointment. He was astonished to see how much she progressed in the time since she was last seen. Actually, she astonishes everyone in the medical field that had contact with her one year ago. He asked me if I remembered that she could barely tolerate 5cc of formula in her stomach when she was born. How could I forget that? Ivey could not retain formula or breast milk. She could not grow. Thus how could she live? She was in a category that is called failure to thrive. Did I ever tell you that? She was listed in that category due to her size and weight (obviously she was deficient in both areas). Now she is undoubtedly thriving and growing!! I told her doc that she is now doing things here in her first year that most figured Ivey would n.e.v.e.r do in her life time. Period. (Smiling, rolling, interacting, playing - most everyday activities taken for granted) He looked at me, laughed and said, "She is light years from where any of us thought she would be - ever." Amen to that!

My next challenge....How in the world am I going to take a 4 year old, a 2 year old and a one year old to the pool.....alone?

The story of our lives - sink or swim!

I was trying to rearrange the sidebar and lost people. Now I can't find them. I'll get them back up soon (I hope.)

The Roll, AFO's, a few new tricks and the santaeasterbunny

Thirteen seems to be a lucky number around here.

If you recall, Ivey had her last surgery on Friday the 13th. Yesterday, after 13 months, she rolled over from her back to her stomach. It is official ---- Ivey is mobile. She is one determined little girl. Look out child proofing-it's on!

Ivey had an appointment with her ocularist last week. Her conformers are really starting to increase in size. This week she will visit her GI doctor for the first time in three months. A record. I spoke with his nurse so much for awhile that she actually recognized my voice, which is not something we aspire to around here. It has been three short months since he last saw her, and he is going to be amazed. She actually has chunky little thighs.

Ivey also got her first AFO’s last week. You can see them in one of the pictures. They are the tiny purple braces on her legs. A love-hate relationship is developing toward them. I love that they will help her flexibility and to stand. She hates to wear them.

Oh, Ivey has also learned a few more ‘tricks’. She pulls the thermavent off of her trach (the clear plastic covering), then she can grab hold of her trach and…..she yanks at it. (A very bad trick to pickup.) She also pulls at her mickey button in her stomach if she is ever naked. If she gets one good grip on that thing its outta there. (Yet another very bad trick to pickup.)

Because of these two things, for the first time in over one year I have actually had to tell Ivey 'NO'. That has to be a record. How many parents can go one entire year without ever telling their child no?

She is getting feisty!! I love it!!

Don't miss Walker the santaeasterbunny in one of the pictures. Yes, it Christmas and Easter in June around our house.