wanting it all

There isn’t a day that I wake up and don’t think about Down syndrome.  It isn’t the first thing on my mind anymore as in the early days of having to set the alarm to wake Tobin for middle of the night feedings.  But slowly as I enter my world of consciousness, the realization settles upon me.  It isn’t a moment that I necessarily recognize but it’s there.  I’ve come a long way. I used to open my eyes and feel an ache in my body that I would soon attribute to the fear of what our new reality would be.  Today its just in the back of my thoughts.  But that is not to say that it doesn’t drive my each and every action or reaction.  I want the best for Tobin.  I want him to be like my other children.  I want him to feel loved.  I want him to know joy. I want him to love God.  I want him to understand what he means to our family and his community.  I want him to feel important.  I want him to achieve milestones we wouldn’t even think twice about with our typical children.  But I am scared of wanting it too much.  I am afraid of feeling disappointment for him and about all of these worldly measures of success.  I am afraid of putting all my eggs in one basket.  I am trying to hope for the best, expect big things and empower him to reach high goals.  But I am also trying to keep an open mind.  I want to be able to think outside of the box.  Ultimately, its that flexibility that is going to be an asset to Tobin (and all my kids for that matter). At the same time, that’s not an easy thing to do for me.  I am a planner, a list maker, box checker, organizer.  Look up “type A” and you’ll see my picture next to it.  And so the struggle wages on between being what I know best and being what is best.  

And as always, I pray that God will equip me. 

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Birth Story part 2

Continued:

We laughed in the recovery room at how we had dodged so many bullets.  And we prayed in thanksgiving to God for delivering us this giant baby who was so incredibly cute and looked exactly like his big brother Carsten.  Our elation lasted into the wee hours of the morning as we were transferred to a private room to enjoy our new son.  I tried off and on all morning to nurse him.  He was just so darn sleep.  By 10 am, he was taken off to the newborn nursery for his bath and checkup.

Shortly thereafter, a pediatrician came to our room. She was an exotic looking woman with long dark hair, impeccably dressed and spoke with a beautiful accent. She explained that she had been taking care of our beautiful son. She went on to say that there were a few characteristics that she thought may be consistent with Down syndrome. I’m not sure if I laughed out loud or not but my first reaction was that this woman was completely mistaken. He looked just like Carsten for heaven’s sake. And then just as quickly as that thought entered my mind, I knew. It was if the Holy Spirit had been quietly nudging me throughout my pregnancy; maybe even my whole life. Not that I had that full realization at that moment. But for a split second, everything clicked. I remembered back to Advent when I was involved with 40 days for life, the prayer vigil for pro-life that is during advent and lent.  I learned of the staggering percentage of babies aborted that are diagnosed prenatally with DS.  I kept thinking “please God, I do not think I can handle a special needs child” and I have no idea why I kept thinking that.

Then the pretty lady who had so beautifully expressed that my son may have this completely unfamiliar condition explained that she had requested the genetics team from the children’s hospital next door come to check on him. We agreed, thanked her for her kindness (she never once said “I’m sorry but your son may have DS) and then spent the next hour flabbergasted. Kyle thought this doctor was out of her mind. Although I kept agreeing with him; I knew. Once someone verbalized it, it made sense like the last piece being slide into the open place on a jigsaw puzzle. I told Kyle that I thought they were right and he still just couldn’t see it. When a small group of people entered our room about an hour later, pulling in chairs accompanied by the pretty doctor, my heart began to ache. The geneticist, Dr. Zackai, was very matter of fact yet so gentle. I heard only a little of what she explained would lead her to believe Tobin has Down syndrome  As tears streamed down my face, she asked where my tears were coming from. And honestly I just didn’t know. Mostly I felt selfish for feeling sad. Why was I sad?  I still ask myself this today and still haven’t quite figured it out fully. Dr. Zackai did a wonderfully thorough job of explaining the diagnostic process and asked if we had any questions. I asked her how certain she was. She said “I wouldn’t be here talking to you if I wasn’t certain”.

When they left, I requested my boy be brought back.  I needed him close.  I needed for him to feel my love.  And I grieved.  I wasn’t sad that he wasn’t the baby I had expected.  I grieved over the mom I was challenged to be.  I had felt like such a disappointment the prior months to my kids.  I was looking forward to moving forward and having more time to be who they needed from me.  And I was so afraid that I wouldn’t be able to meet this challenge.  This fear gripped my heart for 3 weeks.  I told only a handful of friends because we wanted people to love our son; not our son with Ds.  When I told them, I asked for their prayers that God would equip me to be the mom that Tobin needed and deserved.  I couldn’t read any “feel good” stories about children with Ds or families that loved them.  My fear caused me to be very cynical.  One day, while I was marinating in a combination of self-pity and worry about my son’s future, I heard a voice stir inside of me.  Not an audible voice but a feeling.  Suddenly, the thought came – God did not do this to us.  This is our life and it happened.  How we choose to move forward is what defines us.  Fear is not of God.  And that was the moment that was a game changer.  I felt like I could breathe again.  There wasn’t a huge weight on me.  I stopped the daily tears.  I could look at this beautiful child without saying “every cell Lord?  Every cell?”.  I realized too that this baby was mine, just like my other four.  He was mine.  God didn’t give him to me because I am special.  I am being challenged to rise to the occasion.

Months after Tobin was born, my dear friend Sabine told me this story.  Nearly 4 years ago when she was 20 weeks pregnant, she chose to do the prenatal blood work test.  Before receiving any results, she said she would want an amniocentesis because of her advanced age (39).  She’s a very concrete, intelligent and determined person.  So when I challenged why she would consider such a risk to her long anticipated son, she admitted her fear in a baby with Ds.  I remember our conversation but not exactly what I said.  Apparently, I told her “Sabine, if your baby has Down syndrome, I’ll raise him”.  To this day, she calls and asks how her son Tobin is and if I am taking good care of him.

Recently, in an online community of moms with children with Ds, us moms were accused of being all “rainbows and unicorns”.  I think the reason it comes across like that is because the overwhelming fear that we experience in those first days now seemed so unnecessary.  It’s shouldn’t be surprising that our children with 47 chromosomes are not much different than those with 46.  I cannot say with 100% certainty that Tobin’s extra chromosome is what is teaching me some beautiful lessons or not but I am learning lessons that I have been working on my entire motherhood career.  My mentor mom at mops in TX used to say, “The laundry will wait”.  I would think, ‘ya right Bunny.  It’s going to multiply while it’s waiting”.  But you don’t have a choice but to let it wait when your infant takes 45 minutes to nurse because he has low muscle tone in his mouth.  And when the grandmotherly type would say, “enjoy the baby years because they go too fast”, I am trying my hardest to treasure the fact that my stubborn 1 year old doesn’t want to crawl.  I think I have felt the true power of prayer throughout the past year.  I am not a perfect mom.  But I have become a better mom to all my children.  God is equipping me to be the mom they all deserve.

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March 18, 2013 · 10:00 pm

Birth Story part 1

My last post was nearly a year ago.  I had regained momentum and returned to writing; one of the few talents I possess.  I had departed a bit from my cathartic writing of the previous years to more everyday happenings.  So, when I reached the end of my exhausting pregnancy in March 2012, I wasn’t apt to sit down and write.  I was tired.  And then, my life was forever transformed.

You can probably say that exact thing about any baby being born (because its true) but this was different.  We had been through an uncertain period with a few complications and come through the other side with the reassurance from our team of physicians that everything checked out (more about that another time).  The day before my scheduled c-section, my OB called to check on me.  She was on call and had been cautious at our last appointment because I was having contractions occasionally.  So, at 3:00pm I told her that I was rather uncomfortable and beginning to contract sporadically.  She did not want me to wait until the morning so I called Kyle (on his way home anticipating our early check in the next day) to tell him we needed to go in.  After we situated everyone with Nanny Diane, gathered our things, and kissed our 4 children goodbye, we headed off to meet our newest baby guy.

We arrived around 5:30 and checked in.  The nursing staff expected us and we were given a bed in the recovery room seeing as how that’s where we’d end up at the end of the evening.  I got all hooked up and ready to relax. At this point, I was truly in labor, contracting regularly but it was bearable.  There were a few babies making their arrivals that evening so we got moved back a couple of times.  Finally at 9:00pm, Tobin began having some difficulty tolerating labor.  The OB team sprang into action.  Of course, an emergency c-section was in the OR so the room had to be cleaned and prepped.  We were really hoping for a 3/22/12 birthdate (to make things easier for Kyle with a 2/22 boy and a 12/22 girl).  Unfortunately, the epidural didn’t work well and that delayed things as well.  Finally, at 12:01 am on 3/23/12 as the doctor exclaimed “oh my goodness, he is so big”, our 5th baby and sweet baby Tobin Luke was born; 10 lbs and 21 inches.

Our immediate post operative/partum period was relatively uneventful.  He was quieter than my other babies and seemed a little lethargic which isn’t uncommon for bigger babies especially if due to suspected gestational diabetes.  Kyle looked concerned for a moment when they gave him a little breathing assistance of oxygen but it was fleeting.  I sent him over to the warmer to be with Tobin and tried my hardest to calm the uncontrollable shaking in my arms and legs.  I prayed and prayed and hoped that i wasn’t experiencing any of the complications they review when you have had 4 prior c-sections.  And then, I got to touch my son.  Kyle brought him to me while I was still on the OR table.  I kissed his swollen cheeks and noticed how much he looked like Carsten.  He was beautiful and I ached to hold him.

Fast forward to recovery (because my memory fails me about the moments after I saw Tobin and how I actually got to recovery).  I finally got to hold my boy.  He was so soft and warm.  I unwrapped him and with the nurse’s help, held him skin to skin.  We tried nursing a couple of times.  He seemed too tired and was content to sleep on my bare skin.  The nurse reassured us that “bigger babies’ tend to be a little sleepier and to continue skin to skin.  We basked in the reassurance that we had just come through a very physically taxing pregnancy, delivered this sweet baby, and not suffered many of the predicted complications.  Joy was beyond explanation because it was compounded with sweet relief.

Image

We were transferred to a room (on the GYN ward since postpartum was full) and spent the next several hours alternating between resting and attempting to nurse and more skin to skin since he didn’t seem up to nursing.  The nurses, though competent, were not monitoring us as acutely as needed for a fresh post op c-section.  Luckily, as a nurse and 5th time patient, I knew how to check and massage my uterus to prevent bogginess.  I think they may have checked my vitals every 8 hours and I wasn’t even 24 hours post op.  Despite the lack of support from the staff, we settled into in-patient status and adjusting to our squishy newborn.

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March 6, 2013 · 9:52 pm

I lost my voice

Nearly a year ago, I lost my voice.  It was an event that defined my life into a before and after that left me silent.  It was not a trauma insomuch as an event that forever changed the way I view everything.  My son Tobin was born and 12 hours after his arrival, the pediatrician told us she believed he had Down syndrome.

He does in fact have Down syndrome.  Typically a human being has 46 chromosomes, 23 pairs.  A person with Down syndrome has an extra copy of the 21st chromosome; three 21s (Trisomy 21).  Tobin has that extra chromosome in EVERY SINGLE CELL OF HIS BODY.  I like the term Trisomy 21 far more than I like Down syndrome.  I think too many negative images are immediately called to mind when I hear Down syndrome.  I cried when they told me Tobin had Ds because of those erroneous and short sighted images I had as a reference.  I don’t cry those tears anymore because I can see our journey further down the road.  I have made wonderful connections and supportive friends who share in this experience.

I can’t whisper anymore.  It is too much of a  strain.  And so I am going to write again.  Maybe I’ll write about our new reality with the most amazing little boy.  Perhaps it will be about my faith journey.  Or more likely, this blog will be about what it usually is about and that is how we are living as a Catholic military family and trying to live the lives God has given us.

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40 bags for 40 days – update #3

I was a little side tracked lately with some pesky preterm labor and a husband on call every other night at the hospital.  So, most of my purging has been in bursts where I cover a few areas at a time.  But I have donated another 4 black garbage bags of clothes, shoes, and miscellaneous items to charity, 3 rubbermaid containers to friends, and 4 shopping bags of items to friends while throwing an immense amount of garbage away.  Here’s the updated list.  It only took me 3 hours today to finish all the playroom areas.  I ended up with one bag of garbage, 2 boxes of donation toys, and two shopping bags to donate.  And yes, I am working this much just so I can go into labor again early.  While I am 36 weeks as of now, my c-section can’t be scheduled until 39 weeks according to ACOG standards.  So, I am doing all the things that supposedly help bring on labor that I can so we can meet this guy a little earlier than 39 weeks.  Here’s my updated list.  I am so dreading the office!

 

1.  MB Armoire 

2.  MB dresser

3.  MB drawers (we have weird built in drawers)

4.  MB cedar closets

5.  MB night stand/storage ottoman

6.  MB closet (my side)

7.  MB closet (Kyle’s side)

8.  MB bathroom vanity

9.  MB bathroom medicine/storage cabinet

10. Boys bedroom closet (left side)

11. Boys bedroom closet (right side)

12. Boys dressers

13. Boys room

14. Zoë’s closet/dresser

15. Zoë’s room

16. Linen closet

17. Coat closet

18. Downstairs bathroom (medicine cabinet)

19. Playroom shelves (left side)

20. Playroom shelves (right side)

21. Playroom train table storage

22. Playroom TV cabinet/dvd storage shelf

23. Playroom storage cabinet

24. Hall closet

25. Kitchen – under sink

26. Kitchen – utensil drawers

27. Kitchen – pantry

28. Kitchen – top cabinets

29. Kitchen – bottom cabinets

30. Laundry room storage cabinets

31. Office – bookcase

32. Office – desk

33. Office -scrapbook storage

34. Office – couch (since it is covered with boxes and books)

35. Craft cart in kitchen

36. Days 36-40 left for extra days if necessary or random nesting.

37.  Refrigerator – I added this after I realized how many old bottles of condiments I owned and needed to clean out because we have an archaic fridge that allows only for a small amount of groceries at anyone time.

38.  Attic  – I had to rearrange and organize each rubbermaid storage container in order to adequately clean out the kids’ closets.  Got 3 black garbage bags of clothes to donate!

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40 bags for 40 days – update #2

Well, now that Lent is in full swing, I need to get on the ball.  It seems I get the energy to work on one of my areas, complete 2-3 in one session and then am too worn out to do another one for a couple of days.  The reality of how soon this baby could come hit me today when I was looking for my Baby Bjorn carrier and could not find it.  So , I had to venture into the attic to look.  Let’s just say that the attic was not on my list but I added it to the end because I organized all of the rubbermaid containers full of kids clothes and left the attic with 3 black garbage bags to donate.  The problem arises when you are cleaning a closet out, realize you need to store a few of the items you have removed, and in order to store said items, need to make room in the attic’s rubbermaid treasure trove.  So, that’s what happened but I feel so much more organized for the kids for the coming spring and summer months.  Not to mention that I really purged a lot of clothing to donate.  So, tomorrow I am going to work on my closet and pray that I’ll be able to finish that up in one day!  Here’s the updated list:

1.  MB Armoire 

2.  MB dresser

3.  MB drawers (we have weird built in drawers)

4.  MB cedar closets

5.  MB night stand/storage ottoman

6.  MB closet (my side)

7.  MB closet (Kyle’s side)

8.  MB bathroom vanity

9.  MB bathroom medicine/storage cabinet

10. Boys bedroom closet (left side)

11. Boys bedroom closet (right side)

12. Boys dressers

13. Boys room

14. Zoë’s closet/dresser

15. Zoë’s room

16. Linen closet

17. Coat closet

18. Downstairs bathroom (medicine cabinet)

19. Playroom shelves (left side)

20. Playroom shelves (right side)

21. Playroom train table storage

22. Playroom TV cabinet/dvd storage shelf

23. Playroom storage cabinet

24. Hall closet

25. Kitchen – under sink

26. Kitchen – utensil drawers

27. Kitchen – pantry

28. Kitchen – top cabinets

29. Kitchen – bottom cabinets

30. Laundry room storage cabinets

31. Office – bookcase

32. Office – desk

33. Office -scrapbook storage

34. Office – couch (since it is covered with boxes and books)

35. Craft cart in kitchen

36. Days 36-40 left for extra days if necessary or random nesting.

37.  Refrigerator – I added this after I realized how many old bottles of condiments I owned and needed to clean out because we have an archaic fridge that allows only for a small amount of groceries at anyone time.

38.  Attic  – I had to rearrange and organize each rubbermaid storage container in order to adequately clean out the kids’ closets.  Got 3 black garbage bags of clothes to donate!

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Valentine’s Day

We celebrated all day long yesterday!  I was driven to make a big deal about Valentine’s Day for some reason this year.  We made Valentines for all of the kids’ classmates during the week.  I totally overestimated my kids interest and ability in this project.  I enjoyed it but they pooped out half way through.  Lesson learned: next year they make their own.  But they turned out incredibly cute.  I got the ideas from blogs I found through Pinterest and this one was my favorite:  Rolo Rocket.

Rolo Rocket

I volunteered to bring a non-food goody to Carsten’s class and ended up employing Tarrah to help me peel and melt crayons into a heart shaped mold for heart shaped crayons.  And because Carsten has a little friend in pre-school with Eosinophil Esophagitis and is fed through a PICC line, we made non-food valentines for his whole class.  He was excited and actually dance around the kitchen singing “I love my friends” after I showed him the finished project.

For our home, I made pink chocolate chip pancakes and strawberry smoothies for breakfast, heart shaped sandwiches for lunch and served sparkling cider with cherries at dinner.  Kyle bought everyone a pretty cake, too.  It was a lovely day, topped off with a date night for Kyle and I.  We had an amazing dinner at Caffe Aldo Lamberti here in Haddonfield.  The food rivaled the meals we have enjoyed in some of our trips to NYC’s upscale restaurants.  Oh, and I can’t forget the beautiful jewelry Kyle got me, too.  Despite everyone’s insistence on how annoying and consumer driven Valentine’s Day is, I loved showing my family all that love.

Carsten's Valentines

 

 

 

 

 

 

 

 

 

Conversation Hearts on kids bedroom doors

 

 

 

 

 

 

 

 

 

 

 

Breakfast

 

 

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