As Chris was reading me parts of what he was reading I kind of got this sick feeling inside. Now that we are past the worst of it for Aili, and she is doing SO well, sometimes I forget just how scary and serious it all was. Actually...I try to forget on purpose. I just gives me anxiety.
Every night I thank my Heavenly Father for Dr. Hanley and his team. What AMAZING people! I don't even want to think about what my life would be like without them. I am so grateful for them. There are so many amazing people out there that do AMAZING things that we don't even know about! I'm just in awe of these people.
When I wrote about first finding out that Aili had this heart defect I wrote about longing, wishing and wondering why I couldn't have a healthy normal baby like everyone else? After being in the hospital with Aili I realized that there are a lot more babies born with problems than we could ever imagine. It seriously is the most amazing miracle to have a healthy baby.
When we were in the CVICU after her surgery the nurses were talking about a little girl who was being discharged that day. They were all so happy and excited for her. I asked about her and how long she had been in there. Almost 2 years was the answer. This little girl had been in the hospital for almost the first 2 years of her life! It was just one complication after another. My heart went out to that family. I just realized that it all could be so much worse, and to be grateful. As crappy as our situation was, I realized that there are a lot of other people that have an even crappier situation.
I think that is the case in almost every trial you go through, and I try to think about it that way now. As crappy as this is for me...someone else is going through something way worse. That way you can stop feeling so bad for yourself. Doesn't change that it is hard for you, but it helps give you perspective.
We are enjoying every little bit of Aili these days. She is SO AMAZING. Every time we get into bed at night we gush about how in love we are with her.
I still think it is crazy that I have a baby. Do other moms think that? I seriously think....I was pregnant for 41 weeks!...and I actually went to the hospital and pushed this baby out of me. I did it! I really really did it! I was so scared for it. There was so much anticipation, and now it is done, and I have a baby! And it wasn't even that bad! Crazy. I love it, I love her, and I love my cute little family. As corny as that sounds, my heart just feels like it could explode with love sometimes.
6 comments:
Awww, hi I just stumbled into your blog and you really do have a beautiful family. I have a 1 year old daughter and went through a lot during and after my pregnancy with her, nothing compared to you but, it was hard and I feel exactly the same way I look at her and I still can't believe she's mine, especially after loosing to pregnancies before her, I just feel so blessed. God bless you all, I hope you continue with your blog, I'm sure you're busy :)
I love that you came to this conclusion. I have spent the last...... idk how many hours, reading your blog. I believe I started reading at about 4PM. It is now 9PM. I really appreciated how detailed & thorough your posts were. & I can relate to your experience in some ways.
I am a single mom of 2. My first son, who will be 11 years old in a few days, has Autism. When he was diagnosed almost 10 years ago, it wasn't as widespread as it is today. People didn't know what Autism was. They didn't routinely test for it. Autistic kids were often labeled troubled & sent to mental hospitals, or medicated with antipsychotics. Yes, really, ONLY 10 years ago, it was THAT different than it is today. I had my son when I was 16, & I raised him on my own. It was so hard to hear people telling me something was wrong with my child, & thinking that I might have done something to cause it. Back then everyone believed vaccines were the cause. (Now we know with absolute certainty that they do not). It was so hard going to all his testing & consults alone, at 17 years old. I wasn't even grown yet I was dealing with things that grown adults, with a significant other by their side, had a tough time with. It was a tough few years of hospitals, therapists offices, this test & that test, this eval & that eval, speech therapy, occupational therapy, physical therapy, ABA therapy, etc, etc, etc. I couldn't work or go to school, could hardly pay my bills to keep a roof over his head. But we made it through, & I went to college as soon as he started preschool.
I thought the next child I had, it would be a piece of cake. I could never have guessed I'd be so wrong.
My second child was born October 2011. He looked like a perfect little doll. He was very healthy, just... perfect. He came into a bad situation, when he made his entrance into this world. I had left an abusive relationship with his father when I was 12 weeks pregnant. It was torturous & terrifying & so difficult, escaping. He put me through hell those 7 months between the time I left him, & the time I got my first restraining order. He was kicked out of the hospital by staff when my son was born, & they filed reports against him with CPS, he was THAT bad. So, it was a scary situation for me to begin with, because I was so afraid he would go to court & get my son alone & hurt him to hurt me. Mothers always want to keep their children safe, & when you have to fear that the child's own parent would end their life... it's horrifyingly scary. I can't even tell you. Because if a judge tells you that this person can take your child, there is nothing you can do to stop it. So, from day one, things were already hard, with Dominic.
When D was 3 weeks old he started having digestive issues. It turned out to be severe reflux & colic. Not a big deal. Formula switches, reflux meds. Then I noticed his head was growing larger than the rest of his body. It was big, & getting bigger. I went through 5 doctors before someone listened to me, that something was wrong. They ended up running some tests & diagnosing him with torticollis (which is a painful head tilt, that can be caused by problems in the womb, like low fluid, or neurological issues) & benign hydrocephalus (extra CSF in the brain, caused not by a blockage, but an overproduction of CSF). But they thought he had craniosynostosis, because of the asymmetry to his head. That's when the bones in their skull fuse prematurely, & it is incredibly dangerous. The only way to treat it is with major surgery, where the cut the child's head open from ear to ear, over the top of the head, pull back their face, & then saw out pieces of their skull. I honest to God cannot imagine a scarier surgery for a child to go through than that. Heart & lung stuff scares me, but nothing scares me more than BRAIN issues. I mean, you can't get a brain transplant, or get an artificial brain, it's just scary. & to cut their HEADS open & pull their FACE off of their skull?! I had never been so scared in my life. The doctor sounded pretty confident that is what Dominic had. He was sent to Boston to see a neurosurgeon, they looked at him, said it was quite possible, & had us come back again in a few weeks for testing. They gave us the CT scan results right away, it was NEGATIVE. Thank GOD. I had never in my life been so relieved or overjoyed. But it didn't mean he was out of the woods yet. They were worried about his torticollis & the plagiocephaly of his head caused by it. They said he would need a molding helmet, worn 23 hours a day , for about a year. But that they were referring him to the neurologist in Boston, because they were concerned there might be neurological causes for the torticollis.
Nicky was a very unhappy baby. Always screaming & crying. Nobody could figure out how to help him. He couldn't digest his formula, he couldn't regulate his bowels & had to be seen by a gastroenterologist on top of the specialists in Boston. He had constant ear infections, so he had to see the ENT as well. He didn't sleep at night. Was underweight. Every day was so hard to get through. Everything was a project. Eating. Sleeping. Trying to play with him. Trying to figure out whether or not he had too much or too little laxative, because he was either so constipated he would go a week & a half without a bowel movement, or he'd have horrible diarrhea. It was so hard to find a medium. Nothing was "normal" at ALL. He had PT regularly, Shriners did some xrays determined there was no knot in his neck so the torticollis was either neurological or caused by the reflux. Neurologist in Boston did an MRI & said that there weren't really any brain abnormalities, but that Dominic was "remarkable". That he'd never seen a baby like him in all his years as a doctor. Which is a scary thing to hear. So this baby at 1 year old was having his bowels manually regulated, was on special formulas, still underweight, wouldn't eat solid food, was still on reflux meds because his digestion was so off, he had a painful head tilt that caused him to scream in pain anytime someone touched his head or neck, he was up 15-30X a night every single night, I had to do his PT 4x a day, he had occupational therapy as well. & they were still passing him around from specialist to specialist, & I was doing it all on my own, without any help or support, with both of my kids, neither one "normal". At 13 months they put him on a prescription sedative & melatonin, did a sleep study, had no clue why he wasn't sleeping. The behavioralist thinks there is still something neurological but not sure what. At 2.5 years old I still don't have any real answers. He is on 5-6 medications every single night, he still can't regulate his bowels, he is horribly lactose intolerant, he is still up 15-20X a night every single night, he still doesn't eat enough solids, he is on infant formula so that he gets his calories, nobody knows how to solve any of the issues or why they exist. If I could get a diagnosis or someone who knew they could figure it out, it would be amazing. He is a VERY intelligent, very smart, character, little ham of a toddler, & I wouldn't trade him for anything in the world. But I am so tired. I haven't slept through the night in years, I haven't seen friends in years. I don't even get dressed, I wear pajamas every single day, all day.
On top of the fact that I take care of my kids by myself, I have physical issues myself. I can't work anymore, at 27 years old, because my spine is falling apart. I had multiple back surgeries by 22 years of age. I have titanium rods & screws holding my spine together, & simple things like sitting or standing or sleeping are painful. I also have to live on meds, just like my 2 year old. Sometimes it's hard to pick him up, or bend down to help him, or do simple things.
But I believe that God has a plan for me, for me & my kids. I was given the children that I was meant to have, no matter how hard it's been. Motherhood has never been easy for me, because it's been filled with challenge after challenge after challenge. I have no idea if my autistic son will ever be able to live on his own, get married, lead a normal life. Nobody can predict that kind of thing with ASD. The future with him is so unknown. The same goes for my 2 year old. I mean, he's not delayed or anything, so I'm sure he'll be able to live independently as an adult, but I have no idea when I will finally get to rest, get a night of sleep. I don't have anyone who could take him for the night, or for a few hours. He is with every second of every single day. Literally. Showers with me, sleeps in my bed with me, uses the bathroom with me. We are never apart. & I am okay with that, during the night. But I am so exhausted & tired & drained & I haven't been able to recharge in years. It's tough. & I also do it entirely alone.. I dont have any emotional support, or help. It's overwhelming & I don't have anyone I can talk to at the end of the day. It's just me. & my beautiful boys. the only thing that gets me through the day is trusting my God & Savior. Trusting His plan.
Anyway, the point of my commenting on this particular entry is that I really was relieved to see the part where you said that so many people have it much worse. I don't mean me, at all. I just know that there are much worse things a parent could endure than a problem a child has that they can live through, like your daughter, or my sons. I have a friend whose son has stage 4 liver & lung cancer. He is only 17 months old. He was diagnosed just in December 2013! He has a 20% chance of survival. All the pictures of him scrawny & thin & pale & hairless just break my heart. I cry daily, for him & his mommy & daddy. & it really helped me put my situation into perspective. I get to hug & kiss my son goodnight, every single night. This mommy & daddy sit by his hospital bed, not watching him recover from surgeries or procedures, but watching him suffer & basically slowly die. It's torturous for them, I can only imagine. & I think it really helps those of us whose children might have some health issues, but are leading essentially normal lives, really understand just how blessed with truly are.
Anyway, I hope you continue writing your blog, I think it's so well written, & I know writing can be so therapeutic. I write in a tangible, paper journal, every day. I have since I was 9 years old. I can't imagine NOT doing that.
Sorry for the long comment, but after spending 5 hours of my time reading your story, I figured it wasn't really outrageous for me to think you might be willing to take 5 minutes to read mine (:
I'm glad Aili is where she is, making the progress she has. Motherhood is the most amazing thing in the world (:
I love that you came to this conclusion. I have spent the last...... idk how many hours, reading your blog. I believe I started reading at about 4PM. It is now 9PM. I really appreciated how detailed & thorough your posts were. & I can relate to your experience in some ways.
I am a single mom of 2. My first son, who will be 11 years old in a few days, has Autism. When he was diagnosed almost 10 years ago, it wasn't as widespread as it is today. People didn't know what Autism was. They didn't routinely test for it. Autistic kids were often labeled troubled & sent to mental hospitals, or medicated with antipsychotics. Yes, really, ONLY 10 years ago, it was THAT different than it is today. I had my son when I was 16, & I raised him on my own. It was so hard to hear people telling me something was wrong with my child, & thinking that I might have done something to cause it. Back then everyone believed vaccines were the cause. (Now we know with absolute certainty that they do not). It was so hard going to all his testing & consults alone, at 17 years old. I wasn't even grown yet I was dealing with things that grown adults, with a significant other by their side, had a tough time with. It was a tough few years of hospitals, therapists offices, this test & that test, this eval & that eval, speech therapy, occupational therapy, physical therapy, ABA therapy, etc, etc, etc. I couldn't work or go to school, could hardly pay my bills to keep a roof over his head. But we made it through, & I went to college as soon as he started preschool.
I thought the next child I had, it would be a piece of cake. I could never have guessed I'd be so wrong.
My second child was born October 2011. He looked like a perfect little doll. He was very healthy, just... perfect. He came into a bad situation, when he made his entrance into this world. I had left an abusive relationship with his father when I was 12 weeks pregnant. It was torturous & terrifying & so difficult, escaping. He put me through hell those 7 months between the time I left him, & the time I got my first restraining order. He was kicked out of the hospital by staff when my son was born, & they filed reports against him with CPS, he was THAT bad. So, it was a scary situation for me to begin with, because I was so afraid he would go to court & get my son alone & hurt him to hurt me. Mothers always want to keep their children safe, & when you have to fear that the child's own parent would end their life... it's horrifyingly scary. I can't even tell you. Because if a judge tells you that this person can take your child, there is nothing you can do to stop it. So, from day one, things were already hard, with Dominic.
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