Sometimes life is not fair

Elizabeth White was a little girl born with epidermolysis bullosa (EB). EB is a genetic condition and causes the skin to be extremely fragile and causes blisters. This blistering causes painful sores and can lead to infection.

I first came to know of Elizabeth after she began attending school with Aubrey. Then I read about her in the local newspaper after they ran a special series on Elizabeth. Elizabeth started school in Divide County around the same time that Aubrey was at the height of her biting phase. We would walk past Elizabeth in the hallway and I would cringe at the possibility that Aubrey might hurt her. She would always say hello to Aubrey though. She clearly didn't have the same fears that I did for Aubrey's possible actions.

Over the years that Elizabeth lived in Crosby I came to know Elizabeth much better as well as her mother, Jenny. Jenny and I had a good bit in common and we could talk freely about the struggles of raising a special needs child. Jenny had much more on her plate with Elizabeth than I did with Aubrey but there were still enough  similarities that were able to connect on that level.

As I came to know about the struggles Elizabeth went through, the more I admired her courage. She would quiz me on the happenings of my household and I don't think she ever forgot to ask how Aubrey was doing. If she knew that Aubrey had been to a special doctor's appointment or if something happened to Aubrey that was out of the ordinary, Elizabeth needed to know the details. She spent so much time suffering but still needed to know about Aubrey's well being.

Last spring I made Elizabeth a promise that I'd take her to the pool. She really wanted to see about this pool business but wanted to do it on her terms. For Elizabeth's first trip to the pool, we rented the pool so that she could be comfortable being there. After that, it was on. Elizabeth had a blast in the swimming pool last summer and it was so humbling to see the confidence with herself in the water improve so quickly. After our trips to the pool, Elizabeth was more than an kid I knew from Aubrey's school, she permanently held a place in my heart.

Over this past winter, Elizabeth spent a lot of time in the hospital. I would hear her giving the nurses heck and she would tell me everything the doctors were doing wrong. She was in the hospital over her birthday and I started making a birthday party game plan with her to keep her spirits up. She was quite specific on some of the details and I don't think we had any calls where she didn't want to make adjustments to the plan or make sure I hadn't backed out of my end of the deal. She was determined to keep me in line.

When Elizabeth came home from that last hospital stay it was difficult to watch her. She was extremely fragile and the EB had taken over her body. Jenny put on a brave face but my heart broke for her as much as it did for Elizabeth. Elizabeth would not live much longer and the time was closing in too rapidly. She didn't lose her wit though. She was sharp and needed to know everything about everything.

During one of my last visits with Elizabeth, she asked me how Alexander's head was looking after wearing his helmet. Here was this child, in more pain than I could imagine, and she was concerned about Alexander's little head not being straight. Talk about compassion for others.

On my last day with Elizabeth she asked me if she could give Aubrey one of her stuffed animals. Santa had accidentally brought Elizabeth two of the same one and the way she figured it, if she kept one and Aubrey had one, they would be besties forever. The next day, Elizabeth was gone.

Elizabeth White taught me that you don't take life for granted. Not a single moment of it. I saw her pain in a way that I have never seen pain before. I saw her frailty in ways that ways that will never leave my memory. What I saw most in Elizabeth White though, was someone who never gave up. She fought her battle until the very last moment of her life, which ended at 13 years old. I am so honored to have known the courageous Elizabeth White.

The End.

On Wednesday Seth and I celebrated our 10th Anniversary.  On the same day, I had a pre-op for a salpingectomy. Ironic timing, I know.  On the 11th of this month I will literally remove any future chances of me carrying another child.  It should be a fairly easy surgery with only a few days recovery time.  After more than 10 years of considering, stressing about and experiencing pregnancy, that chapter of my life will close.

A few months ago I wrote about a difficult day with Aubrey traveling for a doctor appointment in Minneapolis. It was an extremely confusing and horrific day for her and all I could do was try to physically remove her from public as quickly as possible.  It was just the two of us traveling and Aubrey weighs 85 pounds, plus we had two bags with.  To complicate the situation even more, I was six weeks pregnant.  That information was purposefully withheld from everyone other than Seth at the time because I was so early in the pregnancy and I felt there was no need to even discuss it.  The real issue for me came on the day that Aubrey and I left Minneapolis and headed back to North Dakota.  Aubrey was still was not feeling great and just didn't have the strength to walk independently through the airport.  This time I was able to secure a wheelchair instead of carrying her, which quickly became necessary because I miscarried the baby.  So there we were, just Aubrey and I, in the middle of the Minneapolis Airport and I'm losing a baby.  Talk about a mental overload.  I called the doctor's office to schedule an appointment right away the next day, but by then it was pretty much all over. By the time we landed in Minot, my mind was made up.  When I visited with the doctor, I was going to tell her my desires to have another child were gone.  I was not going to put myself or Aubrey or Seth or now Alexander through this again.  As much as I believe it is important to have siblings, I also knew that after my 8th pregnancy, my body and mind were done. I have tried and tried and tried and having a big family is not something I am capable of giving Aubrey. Giving Alexander a typical sibling to grow up with is something I have now realized is also extremely important, but I have also come to the realization that it is just not something I am capable of.

I was unsure of what the doctor would say.  I knew my options would be extremely limited because of my blood clotting disorder, but as we went over possibilities, I knew right away that salpinectomy is what I wanted.  I wanted to have my tubes completely removed.  I wanted this roller coaster ride to come to an end.  I have two amazing children, I have devoted my life to their well being and I will just have to find a way to make up for all of the brothers and sisters I cannot give them.

I am looking forward to a life that doesn't include morning sickness, extreme fatigue and countless hours in appointments.  I will happily use that time to read books to Aubrey and Alexander, review Spanish lessons for fun with Aubrey, push trucks around with Alexander, continue my education and feel like a normal person. A normal person who goes out to dinner more than they go in for an ultrasound.

So Long 2018

New Year's Day - A day for me to reflect on the past year and think about what I would like to achieve over the next 365 days. Thinking back over the past year makes me realize how quickly time escapes us, and how in just a blink of an eye things change.

Just this time last year, I had a 5 week old baby.  Now I have a little boy that zooms trucks around on everything and went to lunch with me yesterday and ate broccoli and pizza.  He's growing up in what seems like an instant.  Over the past year, Alexander has had us all at the edge of our seats. Does he have CP, did the OB at birth change the course of his life forever, does he need a cranial helmet, is he delayed, is there an underlying genetic disorder, why does he have so many ear infections, is daycare going to work for him, will he require extra care, is he lip tied, why can't he drink from a sippy cup, are we taking him to the right doctors.  Well, here is where we are at with all of that - Alexander does not have an neurological abnormalities, his delays remain unexplained in most part, but have also gotten to be much less severe.  He does still have some noticeable differences in his right and left side, but nothing near as concerning as it was six months ago.  He continues to work with Early Intervention, but I am no longer worried about his long term physical abilities.  Around the same time we traveled to Mayo, Alexander was also placed in a cranial helmet to help reshape his head.  He had front bossing on the right side and flattening in the back.  There was some correction however, I made the decision to take him out of the helmet and hope that he doesn't hate me when his older because he doesn't have a perfectly symmetrical forehead.  The drives back and forth to Bismarck (4 hours each way) were becoming unworkable with both kids and the winter weather. There are still some delays but now speech is more of a concern than gross motor.  We opted out of additional genetic testing in favor of waiting to see if there is continued progress.  A microarray was preformed when I was 11 weeks pregnant and that was normal.  Anything beyond that is pretty technical and I just do not think it is necessary at this time.  Over the past 7 months though, the ear infections have been almost completely constant. He has been on antibiotics so much that I can't even recall the number of times.  He had an appointment with ENT yesterday and is scheduled to have tubes inserted in two weeks.  He also had an appointment with a pediatric dentist yesterday to have his, newly discovered, lip tie corrected.  I'm not sure how that was missed after multiple signs of it, but it was.  I am hopeful that it will make a difference with him being able to drink from anything other than a bottle and possibly improve his speech.  Daycare has been working great for him.  We have loved his caretakers and he has had all of the socialization and learning opportunities that we had hoped for.  I am not expecting any major changes in the path Alexander is currently on over the next year.  I know he will keep working hard and making progress and we will continue advocating for his wellbeing.  He is just a smiley baby and happy as can be.

Aubrey has had more of a consistent year. She is still thriving in school and loving to play outside all day every day in the Summer.  This year she had a new caretaker for Summer and I think Aubrey was smitten.  They were able to spend a lot of time in the pool and at the splash pad in between school and therapies.  Aubrey continued to ride her favorite horse, Mac, over the summer and work with her great therapist.  She also had her tonsils out and has not visited the doctor for a sinus infection/sore throat since then.  Probably the most noticeable change in Aubrey this year is that she got a pretty extreme hair cut.  Her long curly hair was so unruly and the older she got, the harder it was for me to maintain it over her protests. I'm not sure who is more satisfied with it, me or her.  Aubrey got to take 3 trips to Minneapolis this year for various appointments, which means she got to spent a lot of time at Nickelodeon Universe.  They have a fantastic program for special needs individuals and was a refreshing experience for Aubrey.  No real waiting in lines for rides, which means she almost has zero frustration in the park.  It has worked out so well each time.  I am currently in the process of converting all of Aubrey's specialist to be doctors at Mayo.  We were so impressed with the care that Alexander received and it does make a lot of sense to streamline all of her care and appointments.  We were already traveling to St. Paul to see her neurologist a few times a year, so the travel is really no different, just less trips to Fargo.  That should mean more time that she has to spend on rollercoasters each year, so it seems like a win, win to me.

Seth and I are doing well and made a little transition when we made the decision to rent a place in town to help with winter travel.  We were able to get into one of the townhomes by the hospital and, honestly, I cannot believe it took five years for us to stay in town.  It is so convenient and easy to get the kids to school in the mornings and the run errands in the evening or weekends.  We are right across the street from the park so Aubrey is still able to spend time outside when it is warm enough.  The plan will be to return to the farm in the Spring once seeding begins or at least split the time between the two places.  It does work better for child care to have a place in town, but the farm is Aubrey's sanctuary and I could never take her away from that.  I also expect Alexander will be driving a combine within a few years, so he will need to be around to see how things work. ;)

We were able to make two trips to Mississippi this year.  One in the Summer for Drew's graduation and one the week before Christmas.  Drew received his B.S. in Accounting and is now in Law School at Ole Miss.  He is doing well and is planning and receiving his Masters of Taxation along with his J.D. Tyler moved to Williston at the end of last year and began working for ISCO in Williston, ND early this year.  He is settled into his own place in Williston and is probably the happiest I have ever seen him.  My mom is still enjoying her Northern Lights sightings and has made a life for herself here in Crosby.  We see her almost every day and she cares for the kids a lot while I am working late or have to travel out of town for work.  My dad and Marsha have been through a huge transitional year.  As long as everything goes smoothly, they will soon go from foster parents to just parents.  I am anxious for J.M. to be my official brother and a part of my immediate family instead of my extended step family.  Also, the station that my dad had managed for 40 years also closed this year. Although I am a bit surprised at how well he has taken the change, he seems to be more relaxed and enjoying some time off.  For the first time in my life, I actually went to lunch with my father in Holly Springs the last time we were there.  He is definitely the hardest worker I know, but my goodness it was time for a break.

No matter what uncertainty may lie ahead with our family, I am happy to say that 2018 turned out to be a great year for us. We rang in the New Year with our two children sleeping soundly in their beds (at least at midnight they were), and watching The Marvelous Mrs. Maisel. Uneventful - the best kind of night we can have.