I'm a spelling and grammar snob

Obviously I wrote last night's post AFTER I took my Lunesta. Yikes-I had to go thru and edit it a bit this a.m. Yes, I'm anal.

I haven't done so well

Those damn resolutions. I really didn't say I was making any but that I wanted to purge things from my basement which has scared me for years now. I even thought that it would be easier if I did it one area at a time and not overwhelm myself with the thought of the WHOLE basement. So by now I thought I'd have the pantry done. Nope, it ain't done. So, I look ahead towards February and hope for the best.

Haven't done the church going thing either since a couple week ago. Here are my excuses for the past two weeks-wanna hear them? We had to take Evan's party to London since Liz had just had her surgery 2 days prior. I needed my morning to get everything together that we were taking out for it. Today I needed to grocery shop and clean for the coming week. My mom is coming in to stay with Mike and Evan and help with school pick up and dinner for the boys. It's nice that she agreed to come in and it will nice for Evan to spend some time with her. I just didn't want him going to someone's house every day after school and get all wound up and then get home later than normal. Trying to keep things as normal as possible. Last time I went away for a few days to San Diego with my girls he was still in pre-school and life was easier then! I'm hoping not to have any more church excuses. I think the next one we're going to try is Worthington Methodist just up the street from us. I just want to try a bunch of different ones and see which fits the best for us.

Weather report for the week in Florida-sunny, partly cloudy but in mid to high 70s!

My kid kills me. I told him that I'd miss him so much that my heart will hurt. He said he'll missed me so much that his heart will break. Awwww.

The countdown has begun

I am off to Florida in 4 days and counting. Right now the weather channel is forecasting temps in the 70s. Ahhhhh, I can't wait. I don't care if it's raining or cloudy-all I know is that it will be a heck of alot warmer than it is here!

Never again..........

This is Evan's best friend Andrew

............will I have a birthday party at my house in the middle of
winter. I will pay whatever it costs to have it someplace else like I did last year. What was I thinking? The party was from 6-9 and at 7 I was having Mike open a bottle of wine for me. We lost control shortly after it started. It was a very cold day so I think we were dealing with little boys that had been cooped up in their houses all day.

The birthday extravaganza continued into Sunday with the family celebration out in London. He was asleep about 5 minutes after we pulled out of their driveway. Of course he was up at 7 the next morning-a school holiday-wanting to play with his new toys.

I've not been able to stop thinking about the little baby who died last week. I went to his service Friday afternoon and was an absolute mess. It all started when I read a letter that the mom had written to the baby that was posted in the bulletin. I will share it one day-I want to get mom's permission first. She had tons of pictures around the church and items that she had collected from their 3 months in the NICU-all items that I knew too well. I know it would of been hard to attend this service regardless of the day but having it on Evan's birthday really was too much. She was grateful that I made the trip and that's all that matters.

Evan's Birthday

January 18th, 2001-11:41 a.m. Evan entered my world and my life has never been the same. What a day that was. I was so drugged and out of it in the delivery room so I didn't think it odd that the baby wasn't crying. I couldn't even remember that we had a boy-I kept asking Mike over and over again what we had. He was born at 11:41 and I think they brought him in my room about 1 right before they took him to Children's-all I could do is look at him in the incubator. They took a Polaroid of him for me to have (I slept with it under my pillow) and then they took him away. I told Mike to go with the baby and I think my brother and sister went too. My parents stayed with me but I really have no memory beyond that other than Mike calling me at 10:30 p.m. or so crying and saying that they had to paralyze him. He was in the OR at 3 p.m. and he coded. Thank God I didn't know that until much later.

I think back and am so grateful for all the prayers that were said for Evan that day and many days after, for the support and love that people showed us. We would not have made it through if it weren't for our family and friends and those complete strangers from across the country that prayed for Evan.

I am overwhelmed with emotion each and every birthday that he has celebrated. So thankful to God for him.

Today will be a hard though as I have to go to a memorial service for a darling little boy named Jeremiah. He was born on Sept. 21st with some medical issues and over the course of the 3 months that he was in the NICU, I got to know his mom. She was single, young but so very dedicated to that little boy. They were discharged on Dec. 21st. and all was good. He went home with a feeding pump but in the grand scheme of things, not such a big deal. Anyhow, he was at the hospital Friday to have his feeding tube replaced and while he was a bit whiny Friday night, his mom said he was fine. She was up at 5 .m. on Sat. morning to turn off his feeding pump and he was smiling at her. At 7 a.m. he was gone. I can't even begin to imagine what his mom is going through. I talked with her the other day and she seemed o.k. but I can only imagine that she's just going through the motions right now. She asked me to come to the service-how could I say no. So, I will take a deep breath and enter that church and celebrate that little boy's short life and say a silent prayer of thanks for Evan.

Guess what I did today

Wait for it.................we went to church. No, lightning did not strike nor did the walls cave in.

We have gone on and off since we got married. We had just started to look for a church before Evan was born and then after his birth, we wouldn't even consider taking him anyplace with the trach/feeding tube. So, we started looking again about 3 years ago. Went for awhile to my old church in Worthington but early last year we went sporadically to one here in Clintonville. I enjoy going to church-I know it's something that I need-and I feel good afterwards. I have to admit that once you get out of the habit, it's very easy to just sleep in on Sunday morning and not have it be part of your life. I just want to find a place and commit to it-I want Evan to be exposed to Sunday school and church and I want to be a part of a church community again. I want a place with an active childrens/youth ministry. Evan was baptized when he was 13 days old in the hospital, the night before they repaired his esophagus,but I want him to be baptized again in front of a congregation.

I went to church and Sunday school every Sunday while growing up and it was such a huge part of my life. Youth group every Sunday night from 7th grade on. Most of my friends were from church/youth group and to this day I am still close to my "core" group-we have known each other since I moved to Worthington back in 1972 when I was in 3rd grade. We all went to Worthington high school (my parents moved to London at the beginning of my senior year) and supported each other-that was a hard place to be if you weren't rich and popular. My "church" friends were there for me when my parents separated when I was a freshman and again as a sophomore-when they sold the house, my home, the place we all would gather-when they were heading for a divorce. The church was my refuge at that time. I want Evan to experience that sense of fellowship. I not only want that for him, but I want and need that for myself as well.

Friday Night Lights

Oh, I love this show. If you get a chance to watch it, it's on Friday at 9 on NBC. I usually tape it and I just finished watching it a little while ago. Now, along with the show being really good, I also enjoy a couple of the men on the show too. Well, one is probably young enough to be my son (on the top) but the other is Kyle Chandler who is around my age. He just gets BETTER with age. sigh...............................

The last day

Monday will be Evan's last day with Jean, his speech therapist. I'm still kind of in shock that it's coming to an end for now. We've been seeing Jean since spring of 2002-he was still a baby! She told me last week that she really doesn't feel that he needs weekly therapy anymore. His test scores are where they are suppose to be (if not above) for his age and she feels as though he's doing great and has made tremendous progress. She has assured me that I can call or email her at any time and she will always make room for him if I feel as though we need to come back. Our plan for now is to wait and see what Dr. Cotton and the voice clinic has to say in December (our next visit to Cincinnati) and go from there. At one point, Dr. Cotton talked about laser surgery to remove the scar tissue on his vocal cords. Who knows when that can or will happen so for now I just don't think about it!

I'll never forget that day in November of 2001, sitting across the room from Dr. Cotton after his first exam of Evan's airway. He told us his was a very challenging and complicated one and that he couldn't tell us if he'd ever have a voice or not. Now I can't get him to shut up! God is good.

I Wish You Enough

Recently I overheard a mother and daughter in their last moments together at the airport. They had announced the departure. Standing near the security gate, they hugged and the mother said, "I love you, and I wish you enough." The daughter replied, "Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom." They kissed and the daughter left. The mother walked over to the window where I was seated. Standing there I could see she wanted and needed to cry. I tried not to intrude on her privacy, but she welcomed me in by asking, "Did you ever say good-bye to someone knowing it would be forever?" "Yes, I have," I replied. "Forgive me for asking, but why is this a forever good-bye?". "I am old, and she lives so far away. I have challenges ahead and the reality is - the next trip back will be for my funeral," she said. "When you were saying good-bye, I heard you say, 'I wish you enough.' May I ask what that means?" She began to smile. "That's a wish that has been handed down from other generations. My parents used to say it to everyone." She paused a moment and looked up as if trying to remember it in detail, and she smiled even more. "When we said, 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them." Then turning toward me, she shared the following as if she were reciting it from memory.

I wish you enough sun to keep your attitude bright no matter how gray the day may appear.

I wish you enough rain to appreciate the sun even more.

I wish you enough happiness to keep your spirit alive and everlasting.

I wish you enough pain so that even the smallest of joys in life may appear bigger.

I wish you enough gain to satisfy your wanting.

I wish you enough loss to appreciate all that you possess.

I wish you enough hellos to get you through the final good-bye.

She then began to cry and walked away.

20 Things To Remember

TWENTY THINGS TO REMEMBER

1. Faith is the ability to not panic.

2. If you worry, you didn't pray. If you prayed, don't worry.

3. As a child of God, prayer is kinda like calling home every day.

4. Blessed are the flexible, for they shall not be bent out of shape.

5. When we get tangled up in our problems, be still.God wants us to be still so He can untangle the knot.

6. Do the math. Count your blessings.

7 God wants spiritual fruit, not religious nuts.

8. Dear God: I have a problem. It's me.

9. Silence is often misinterpreted, but nevermisquoted.

10. Laugh every day -- it's like inner jogging.

11. The most important things in your home are the people.

12. Growing old is inevitable, growing up is optional.

13. There is no key to happiness. The door is always open. Come on in.

14. A grudge is a heavy thing to carry.

15. He who dies with the most toys is still dead.

16. We do not remember days, but moments. Life moves too fast, so enjoy your precious moments.

17. Nothing is real to you until you experience it;otherwise it's just hearsay.

18. Its all right to sit on your pity pot every now and again. Just be sure to flush when you are done.

19. Surviving and living your life successfully requires courage. The goals and dreams you're seeking require courage and risk-taking. Learn from the turtle, it only makes progress when it sticks out its neck.

20. Be more concerned with your character than your reputation. Your character is what you really are,while your reputation is... merely what others think you are.

I think I'm done with the past

My cousin gave me a parents keepsake journal when Evan was born. I wrote in it on and off for the first 3 years so I have quite a bit of his first 3 years documented but then my dad got sick and I stopped writing. Here are a few of those entries:

5/13/01-Happy Mother's Day to me! Ever since I can remember, I hoped that I would be a mom some day. How lucky I am that God gave you to me so that I could be your mommy. You bring a smile to my face every day. The love I feel for you is like nothing I ever imagined. This is the best Mother's Day I think I'll ever have because you are home with us.

7/12/01-Mommy and Evan had an adventure today-we went to London to visit Aunt Liz, Grandma and Grandpa all by ourselves! You were the best boy-you didn't cry all day. Mommy was a little scared to be doing this all alone but we got thru it. Now we can do anything!

9/11/01-Today was a day that changed our country forever. Some bad men who hate us here in America took many innocent lives-in NYC at the World Trade Center, in Washington DC at the Pentagon, in a field in PA. There were very brave people in all of those places-some that lived, some that died. I was very scared this morning and so happy when Daddy came home from work early.

3/9/02-You have been home with Mommy and Daddy one whole year today. We were so scared when we brought you home. You were so tiny-only 5 lbs.-now you are 17 1/2!! We didn't think we could take care of you. We didn't leave your room for 2 whole days. You weren't too happy being home-you cried whenever we needed to change you, clean your trach site-you name it. You weren't used to being here after spending your first 49 days in the hospital. But we all adjusted and got used to each other! We you love angel, so, so much.

12/30/02-An entry from Mike: The 2002 holiday season is almost over and your 2nd birthday is approaching. This Christmas was by far the best I have ever had because this is the first year that I was able to see Christmas thru your eyes. The excitement that you show for Santa, snowmen, lights and Christmas trees is enough to warm the coldest of hearts. This year you gave us the best Christmas present on Christmas Eve-you walked! You were able to meet in person so many of the people from London that prayed for you-you showed everyone that God does indeed answer prayers. Evan, words can't describe how much I love you! You and your mom are the best thing that ever happened to me.

Ah, there is so much more but I'll leave that for Evan to read one day when I pass on that journal.

Here is a letter I wrote to Evan in Oct. 2005. I thought at that point I would at least write something similar every year (this is the one and only letter). So much for that!!

October 3, 2005
Evan,
I have not done a very good job in writing in this book as it has been over a year since I’ve touched it! I decided to just type out a recap of this past year to the best of my ability.

First of all, you are the love of my life. Daddy’s too. You are so smart, loving, good-natured and funny. You talk up a storm and like to push Mommy’s buttons with talking about the same things over and over again!! We’re now into your favorite time of year-Halloween time. You want to be a skeleton this year-we’ll see!! You love to go to the pumpkin patch-we went last year and saw Claire and Connor-you LOVE them so much. I know we’ll go back this year too. You are back at school at Marburn-your second year of preschool. Miss Cindy and Miss Debbie are your teachers (you had them last year) and you love to go. Blaise is still your best friend and you also play with Annabelle, Chris and Caleb. You are one of the big boys now in your classroom.

Let’s see, where have we gone in the past year? Well, we went to California to see Uncle George and Aunt Maria and we went to Disneyland!! You loved it and you rode all the rides, even the Matterhorn! We went at Christmas time so it was all decorated for the holiday-you loved It’s a Small World-it was very pretty. You and I took Grandma on a trip this summer up to see Aunt Mary and Uncle Bill at their cottage in Holland MA. You had a great time and you fell in love with Mommy’s cousin Julie. You even went swimming in the lake! We saw Aunt Georgia along the way and you loved her cuckoo clock. The rest of the summer was spent playing with Nancy and other friends at the playground, going to the library and riding Peddler, your horse for hippotherapy. We also spent a lot of time with Grandpa and Grandma.

Angel, we had a bad thing happen this year. Grandpa was diagnosed with ALS on Sept. 22, 2004 and he died on Sept. 6, 2005. Liz and Cathy moved in with them in Nov. and were there to help take care of him. I know you’ll remember that his arms and legs and head stopped working and we had to feed him and help him do everything. You were so brave though-you just loved Grandpa even though he had changed. He loved you so much Evan-you were his miracle grandbaby. I will never let you forget how much he loved you. He was so happy to see you happy and healthy. We buried his ashes on Sept. 28th (his birthday) and then we had a big church service to remember him on Oct. 1st. Oh buddy, you have handled this so well and you know that he’s in heaven. On the day he died, Mommy told you that he had died and gone to heaven and that he wasn’t sick anymore. You said to me "So his arms work again". I assured you that they did and you wondered if he was eating and that he could now feed himself. You also wondered if he was there with Gypsy his dog who also died this year and I said I believed they were together. You decided that Grandpa was probably throwing her a ball and I said yes! The other night we were lying in bed together, talking about him. You told me that you missed him and then you started signing the word for Grandpa, something that you hadn’t done in a long time. I think he was with both of us that night. The other day, I told you that I missed my daddy a lot that day and you said that you didn’t and you went on to tell me that you didn’t miss him because he was inside you forever. So true angel-Grandpa will always be a part of us and in our hearts forever. So, you will see me cry from time to time as I think about and miss my daddy. He was a wonderful father and grandpa to you, Jack and Sam.

Slowly but surely..................

Update September 2004: Evan has continued to amaze us this year. Wow, where to begin. He continues to attend our local MRDD preschool - actually he's been off this summer and is ready to begin again in the next couple weeks. We're a bit anxious because while we know and love the school itself, he'll now be in an actual preschool class, no longer in the toddler. Last year there were 7 other little ones in his class, all the same age, and now he'll be in a class with up to 18 kids and with ages ranging from 3-6. YIKES!! He's still a bit timid around kids that are bigger than he is, so we're just praying that he adapts quickly. Two big events occurred this summer - one is that we were able to pull out his Mic-Key button. NO MORE TUBES!!! Getting him to take his Prevacid by mouth was our biggest challenge this spring and our little guy rose to the occasion and started taking the Solutabs with no fuss. We couldn't believe it. We got the all clear from his GI in Cincinnati, so on July 2, 2004 we celebrated Independence Day two days early by freeing him from his button!! We also got a good report from Dr. Cotton in regards to his airway - it is still nice and open, two years after his LTP. We'll see him again in December. Then, our next big event took place on August 3rd when we had our semi-annual meeting with the feeding team in Cincinnati. They told us they don't want to see us anymore! I really believe that it was the loss of his trach that helped him along with his eating. He gained 3 lbs from the end of March until we saw the team in August. They were thrilled with his progress as were we. We are still busy with speech therapy - he's talking up a storm but now we're starting to work on his voice quality more than speech and language itself due to his cord damage. We just continue to pray that his voice gets stronger and more audible to those who are not familiar with him.

He went to hippotherapy this summer and absolutely loved it! We weren't sure how he'd take to it due to his timidness, but by the end of the summer, his confidence just blossomed. The first day they had him on a miniature pony but then the next week and every week after that, they had him on a big, big horse!!

We were able to attend trach conference in St. Louis in June. What a wonderful experience that was. It was so nice to see other parents from the board as well as see Dr. Cotton, in a setting other than the hospital.

We'll get to the present eventually!!

Update December 2003: May 17th, 2003. We will never, ever forget this day. Evan was finally decannulated! After 2 years, 2 months and 21 days, the trach was gone. The big day took place at Cincinnati Children's - my husband Mike pulled it out - I thought I was going to faint and Evan didn't even blink an eye! This happened at 7 a.m. and of course we were then on the phone calling our families by 7:15!
We did have trouble with his stoma in that it didn't close all the way by itself but Dr. Cotton took care of it on November 14th. Two weeks later there is still a scab but its wonderful not to hear air whistling thru the stoma (I really don't miss cleaning up the secretions that continued to come out!).
Evan started preschool in September at a county run Early Childhood Learning Center. It is a wonderful facility and we are so grateful that it is available to us. His teachers are so warm and loving as are the therapists. He goes 4 days a week for 3 hours each morning and he absolutely loves it. He was very intimidated by the other children when he first started because he was so isolated when he had the trach - he really had not had the chance to socialize but now he's running and playing with all the other kids and he's just having a ball. His teachers say that he's just blossomed since September. Our biggest hurdle right now is speech, but he does see the therapist at school once a week and we still go to private therapy once a week as well. He is very chatty - you just don't understand what he's saying!
Due to damage and scarring to his vocal cords, his voice is a bit breathy and quiet, but he can be loud when he wants to!!

More of the past............

Update January 2003: We can't believe 2002 is over already! What a year it was for our little guy. We were told by Dr. Cotton in April that we could proceed with the reconstruction surgery (LTP) in the summer. We were both scared and excited. August 5th was the big day. He made it thru surgery with flying colors and we were in the hospital for 5 days. He had the stent removed on Sept. 6th and then Dr. Cotton took another look in Oct. and Dec. In between those two scopes, Evan finally was able to tolerate the Passy-Muir; what a wonderful experience it was to hear him laugh and cry! He has a very quiet voice but its music to our ears. We got the news we had been waiting for on Dec. 13th (believe it or not) the airway looks good and we're scheduled for a 48 hour capping trial down in Cincinnati on 1/21/03. Along with all of this, he is now walking (Christmas Eve)!! He also got a Mic-Key button in Sept. and is taking almost all his nourishment by mouth. We are working with the feeding team in Cincinnati as he is not eating age appropriate foods-chewing is an issue, but he's trying and he's come a long way as far as what he'll eat. We still go to PT/OT but not as often and he's started weekly speech therapy, so we're kept very busy!!

We also went on our first vacation in Feb. 2003 with the help of Grandma and Grandpa. What alot of work that was but it was worth it. The picture above is Evan with my dad-I will never forget that vacation.

2008

Here we are-2008. I didn't do a very good job of posting beyond my first entry in September but it's a new year, right? Time to start again. What I'm going to do is try and chronicle Evan's life starting with his birth back in 2001 with the help of entries I made on a trach website and go from there. So, here we go......................


Evan was born 7 weeks early on January 18th, 2001. I developed pre-eclampsia at 30 wks and was then hospitalized for 3 days prior to my emergency c-section. The pregnancy had gone smoothly up until then and as far as we knew, we'd only be dealing with a premature baby. We were wrong. They rushed him from the Ohio State University Medical Center to Children's Hospital here in Columbus OH (where we live) within the first hour of when he was born. He was born at 11:41 a.m. and was in the OR by 3 p.m. to put a g-tube in his stomach. Evan was born with TEF/EA which repaired when he was 13 days old (on January 31st) as well as a laryngeal web. Oh, and an extra thumb which was removed this year. They could barely intubate him that first day but by the grace of God the doctors were able to do it. Long story short. After 6 wks in the NICU, they did decide to trach him (February 26th) since he was in such distress while breathing on his own. Heliox helped but we knew he couldn't go home on it. It was a hard day but it gave us comfort to see him breathing so easily after it was done. We brought him home on March 9th, 2001 and since then, we've only spent 1 night in the hospital! He's 14 months now, sitting up on his own but we are working with a physical therapist for other gross motor delays. We are working with Dr. Cotton's team in Cincinnati and hope this year to begin the reconstruction surgery. Evan is a healthy, happy, bright little boy and the light of our lives!

Obviously, this has only taken us to the winter of 2002. More to come.