Today is Monday. Ugh. All I feel like doing is sleeping, but I cant...
My husband finally was tired last night and wanted to sleep. So unlike what we usually do each night since April 1st, I wasn't able to lay in bed numbly browsing the Internet as the flicker of the TV washed over us. He wanted to sleep. I couldn't.
I went outside for a little bit. The weather was so nice. A little chilly, no wind, calm, quite, no bugs; nice. It didn't last long. My mind got the best of me. All I could think of was Cujo the neighbor dog cornering me again (I cannot wait for the neighbor to finish his fence!). That, and my 'view' was the cemetery I live next to. The site of it left a hard lump in my throat; making it difficult to swallow.
I tried to organize my office, but got overwhelmed just by looking at it. So I tried to scrapbook. That didn't work either. The first picture I pulled out was of my son at 7 months old during his last hospitalized visit with an IV in his arm. His arm was wrapped and taped to a board the same size of his whole arm to prevent him from bending it and pulling out the IV. That was a hard 4 nights. Plus it didn't feel the same scrapbooking without my girls. I felt like I was cheating on them. Its not as much fun without them.
For those who know me well, can understand this next part. But if you do not know me, well, try your best to understand. I am a weird person; I take education very seriously. If you don't use it, you will loose it! Since sitting outside, cleaning my office, or even scrapbooking didn't help, I broke out my college calculus textbook and worked an entire page of problems. I should have just don't that first because it worked. I always feel better if I give myself a good mental challenge. I am not one for physical challenges; I never feel the need to prove anything in that area. I know I am a wimp. A whole 105 pounds of pure WIMP! Not that I am ashamed of it. I am however ashamed of someone being smarter than me, especially when that subject is math, physics, or english/grammar (by the way, my grammar has suffered greatly since my college days; laziness got the best of me). I am proud when people call me a math geek. And no, I was never teased in high school or college for being smart. I never did understand why that is for some people. I did however get teased when people find out I kept my college math and physics textbooks for my own personal pleasure. That's okay. Again, I am not ashamed of anything.
After my math problems, I felt more relaxed and thought I would try the "sleep" thing again. It worked. I even felt more refreshed this morning, waking up to the sounds of "Da-Da!" coming from my son's room. Little did he know he was going to get Ma-Ma instead! It was nice to get half-sleepy, drooly kisses. They are the best kind.
This morning was a first for something I didn't expect. I dropped my son off at his daycare and he wiggled to get out of my arms. As I set him down, he ran up to his daycare lady with great joy to see her and jumped into her arms squealing like a little piggy; the cute baby kind. Maybe he has done that before, I don't know. This was the first time I saw that. He was happy to be there, and didn't cry when I left. My heart filled with relief, comfort, and happiness. I was so happy to see that he loves her and is comfortable being in her care. He is making friends, and her whole family enjoys his company. He never did that before with our previous daycare lady. I don't blame him. Previous daycare lady made me feel like my son was just a daily business transaction. Ours now makes us feel like part of the family, and I can really see the difference and positiveness in my son's behavior and newly found personality. He is truly the love of my life.
Speaking of love. When my husband and I first got married, a high school girlfriend of mine gave us a Christmas cactus. Sure, it may be viewed as an odd gift to give (some people give me funny looks when I explain to them how I got the plant), but in my mind it was the best kind. I knew it came from the heart and she put thought into it. Besides, I love cacti! It is a gift that keeps giving. How did she know? We call it out Love Cactus; a spin off of the Love Fern from the movie How to Lose a Guy in 10 Days. If you haven't seen it, you should. Its cute and endearing. So we have had out Love Cactus for 3 years now and it has never bloomed until one day; the month we found out we were pregnant with Baby Elijah! It popped two bright pink flowers. It must have went back to sleep because then next time it bloomed again was the beginning of April, the month we found out about Elijah's condition. It has many pink flowers on it now, and wont stop. When one drops off, another somewhere takes its place. I hope it continues to flower as long as Elijah is alive. Even if it doesn't, that's okay too. Its not only my husband's and mine Love Cactus, but it is also the Cactus of Life for our sweet Baby Elijah. Here is a picture of it a few days ago...
The rest of today I will be mentally preparing myself for our two appointments down at Abbott Northwestern in Minneapolis tomorrow. I have to think of a game plan, prepare myself for when I hear the words "no". I don't want to hear those words unless they benefit the life of my unborn child.
I hope we get the formal results back too from the amnio test. Triploidy has 3 versions, or groups per say. All 3 have an extra set of chromosomes, but depending on which extra set of chromosomes they get results in which version they are diagnosed with. A child can be 69 XXX, 69 XXY, or 69 XYY. A 'normal' person is either 46 XX (girl) or 46 XY (boy). So that is how I am understanding it so far. One of these triploidy versions does better and has a higher chance of survival then the other two. Tomorrow I hope to have this clarified of which one it is, and which one my baby is.
I found 2 stories of triploidy children living today. One is named Sabrina, she will be 8 years old this year. She is full triploidy 69 XXX. I have hope for my child, but I have been told that Sabrina's case is not a "normal" triploidy case. She was a miracle and beat all the odds. She had two holes in her heart, that completely healed on its own! Baby Elijah has only one hole, so.... All I can do is hope. The other story is a 24 year old man. I don't know much about him, or which triploidy he has. But all in all, I am amazed he is alive. I still do not know though if either of them has spina bifida...
In all honestly, not only am I terrified of losing my child; I am equally terrified of having a child with so many medical complications and disabilities and trying to care for it long term. Am I strong enough? Will I know what to do? Something so fragile and delicate as Baby Elijah, what if I hurt him? Will my emotional health hold up? Will my finances deplete and I will have to sell my house? What kind of life would my son Paighton have? Will he grow up with a negative or positive view on disabled people because mommy couldn't go on his field trip at school, but had to stay home and take care of Elijah instead. That would kill me if my son was cruel to those with disabilities. Some of the greatest moments of my life have been time spent with my group home guys. My mother always told me I am the queen of "what-ifs". I know.... my mind starts to run and it is hard to catch up to it.
All of this thinking, some of it mindless, other parts exhausting, makes me feel like sleeping. If only my thoughts would go away in my sleep. Instead I just dream my fears and they feel all more real life than they actually are at this point. It would be interesting to be in a situation like Alice's form Alice in Wonderland. I would just eat some cake and stomp on my problems, or drink some elixir and shrink down into a small dark whole where I could be found by no one.
Sweet dreams Alice...
