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Monthly Archives: January 2016

There Are No Rules For Grieving

My life was marked by death at a young age. Life was innocent and carefree up until that point. All of a sudden I had to look after myself and my little sister. I had to “grow up fast”. I don’t remember my mother’s death making a huge impact on my life in those first few months. Two months after, on my 11th birthday, my face in the photos don’t look particularly happy as I imagine any kid that age would be. Her absence started to affect me a little later in junior high and high school. My journals are full of anger and hate and hurt. I remember crying myself to sleep almost every night and being in school with a bright smile the next day. I was living a double life, for lack of a better term. In college, I hit my absolute lowest point with nightly panic attacks, therapy sessions and anti depressants highlighting my whole freshmen year. I missed my mother. I was grieving then. I’m still grieving now 18 years later. When I think of my mother now I feel a deep sense of loss. My mind is full of imaginary memories with my mother. I wonder what her reaction would’ve been when I told her I was having twins. I imagine her visiting the hospital while I was sick and never leaving my bedside and later holding Sakura and Akira. I make up scenarios of her taking the girls to the park like she did with me. I wonder what life would be like if she were here. I don’t think it’s crazy to think this way, I think it’s my way of grieving her now at this point in my life. I remember when I was angry, pissed off with my father, mad at God, hated the world. How else is a 14 year old suppose to grieve? Now, nearly 2 decades later that missing piece, that hole in my heart is still there, never leaving me. And that’s okay. Grieving doesn’t have a stop point, a time frame. It doesn’t have an end. Life does go on and you learn to live without that person in your life, but you will always miss them. At first it’s very hard. Even to think about them brings up every emotion as you had when you first found out they were gone and you cry out in pain again and again. Then as the months and years pass it gets easier. You may still cry, but the wound has healed some. Don’t let anyone tell you its time you “get over it”. That your time to grieve has already passed. You give yourself the space you need to get your wits about you, place your feet on the ground again, and take one step at a time. The gravity of losing someone close to you, a parent, child, sibling, spouse, or best friend, takes it’s toll on the mind, body and soul and to ignore it for some unwritten rule of limitation is to deny yourself the ability to be human and grieve as you see fit. I ignored my right to grieve for years and it ended up in an ugly war for my sanity. When I learned that to grieve is a process and not a set schedule I was free to remember my mother and miss her in my own way. I’ve determined that that wound in my heart will never heal and I will always grieve her and that process will change over time. It’s it okay because there aren’t any rules to how long I should miss her. I will miss her always…

So, How’s Homeschooling Going?

I get asked this question a lot. It’s not a bad question, just my friends wanting to know how things are going. We’ve been homeschooling a little over 6 months now and we are loving it. There is a huge learning curve that we are still riding, but we take it in stride and learn as we go. The biggest change I think is within myself. My whole perspective on education has been changing. I’ve started to associate the word “education” differently. Before homeschooling education brought to mind images of textbooks, 3-ring binders, rows of desks, thinking about what I have to memorize for the next test, and feelings of anxiety for my least favorite subjects. Now, I see education as an endless stream of knowledge with so many things to see, do, feel ,and learn. Learning should be a positive experience with meaning to the learner. Otherwise, what’s the point? Algebra meant nothing to me while I was learning it, and still doesn’t. Tenth grade biology was awesome and has turned my interest to learn more about anatomy and how the human body works. (I’m no expert, I just find it fascinating ;))I even took a forensic science class in college, which was awesome! For now, with a couple of 5 year olds, we just have fun. I try my best to make life interesting and fun like the fuzzy caterpillar we played with in the park for 10 minutes or the adorable animal videos a cousin of mine posts on his Facebook page. I believe the girls love homeschooling even though they don’t really understand it. The only experience they have in school was a positive one and they loved it. But, there’s no housekeeping area or pool time in kindergarten.  Right now, I see no reason to put my girls back in school. I don’t know if that will change in the future, but for now we are just loving life…

When Enough is Enough

Way back in June I pulled Sakura out of therapy, both physical and occupational therapy. And boy did I get some crazy looks! In the special needs community it is unheard of to pull your child out of therapy for several months. Maybe for a week to recoup or go on vacation, but not 5 months. Well, we did and it has been wonderful. I have a friend who takes her son to 8 therapy sessions a week, another friend has 9 a week. I had 3 sessions to get Sakura to every week and it was killing me. Between school, homework and therapy I was at my wits end with it all. I was even throwing out homework the last couple of months of school, straight in the trash when we got home. The joy of not having to go to therapy these few months has been such a relief for all of us. To all you moms who are absolutely stressed out and maxed out, I would advise you to take a step back and breathe a little. This isn’t just for special needs moms. The mom going to activity after activity with their kids and hour after hour of homework at home, or the mom with 3 kids under 5 years old and 2 are in diapers take a step back and breathe. Give yourself a boundary, a margin for yourself. It’s alright to say “No more.” I’ve been getting better at saying that. After 5 months without therapy Sakura is doing great! When I did restart sessions with PT and OT her evaluations showed a marked improvement. I just smiled and reminded her therapists that she hasn’t been seen in 5 months, just playing like any other kid. Here is how I see it: she has a life long disability and in the grand scheme of life 5 months is just a tiny blip. I’m happy we spent it living a little more carefree and happy…

5 Quick Tips and Advice for Your NICU Stay

I started showing signs of preeclampcia during 4th of July weekend. It was like an elephant was sitting on my chest. A quick Google search lead me to what it was. My husband thought I was over reacting to some heartburn. I let it go thinking he was right. I gave birth a week and a half later at 28 weeks. The scene that unfolded over the next couple of weeks was life changing. All of a sudden my girls were here and needing ventilators to breathe. They would stay in the NICU for months before we were able to bring them home. We were thrown for such a loop and had no idea that NICUs even existed. Looking back now there are a few things that I wish I had known when my girls were first born, which I’ll happily share with you. 1) Hold your baby ASAP Creating a bond through touch is crucial at this stage. Don’t be discourage by how small your babies are, ask your babies nurses about kangaroo care and when you will be able to start. Kangaroo care is when you hold your babies directly on your skin and there are benefits for both parent and baby. They will feel like a feather on you, but don’t be alarmed and know that this is one of the best things you can do for your babies. Also, be prepared for the nurse to put your baby back in her isolate if her oxygen or heart rate keeps dropping. This may happen a lot in the beginning, but will happen less often as your babies gets stronger.   I didn’t hold either of my girls for 2 weeks. The nurse didn’t offer and I didn’t ask. I didn’t ask because they looked so tiny and fragile that I thought they would be safer if I left them in the isolate. The complete opposite is true. It’s beneficial to both you and babies to hold them and sing songs into their little ears. 2) Ask questions…Including the hard ones The first questions I asked when the NICU doctor came to see me were are my babies going to survive and what was the prognosis. I needed information to be given to me straight without any sugar. Once I was satisfied with tho se answers I moved on to other questions like how do I change her diaper through an isolate? The nurses are your best resource for information about your babies. They will help you with bathing them, taking their vitals, and feeding them. Some families become very good friends with their NICU nurses for years. Caring for your babies is going to be a whole lot different from what you thought it would be, but you can care for them. 3) Take advantage of hospital resources Find out what programs the hospital offers to parents in the NICU and patients in general. I was very grateful for the donor milk program available at our hospital. Since my girls were born so early I wasn’t producing any milk and didn’t for 2 weeks. It was a huge relief because my inability to “perform” was stressing me out. My girls were able to use donor milk until mine started coming in. We also leaned on, and became good friends with, one of the Chaplains at the hospital. He was there whenever we needed him. Being away from our home state and our home church was difficult and he was willing to step up and fill the gap. When we told him about the surgery one of our daughters was going to have he was right there with us. There were other resources as well such as Ronald McDonald House, a breast pump room and a room to take naps in, even spend the night, close to the NICU. Check out what is available and don’t be afraid to plug yourself in. Any extra support during this time will be helpful. 4) Reach out to others This is when social media is your best friend. Get onto Facebook and find groups of other NICU families and join them. Look up groups with your baby’s condition if they have one. Use these groups to ask questions, vent, and gain support of those who have been there. The NICU Support Group for Parents of Multiples is a good start. Take the opportunity to get to know other moms in your NICU. It’s an immediate relief to talk with someone about your situation. In the process you help another mom by listening to her. It always feels good to help someone out. I met a mom who had triplets and they were almost at the end of a long stay in the NICU. We talked about her breast feeding schedule and I was in awe! She encouraged me to be positive and assured me that there is a light at the end of the tunnel. 5) Take care of yourself I cannot stress how important it is for you to take care of your needs. During this time even the basics, eating and sleeping, are forgotten. I was running myself ragged driving to the hospital everyday. I wasn’t letting myself heal correctly after the c-section. One of the nurses finally told me, in a loving way, to stay home and go on a date with my husband. She reminded me that my girls had the best babysitters possible! I would also suggest you be honest with yourself in how you are doing mentally. For some reason once my girls were born and I was discharged I was forgotten. There isn’t sufficient (if any) postpartum care for the moms, forget the dads. Having babies born prematurely and staying in the NICU can be extremely traumatic. Please don’t…

This is Our Normal

We have never known any different. We don’t know what it’s like to have just one child. We don’t know what it’s like to live without a lifelong diagnosis. This is our normal. To be honest I don’t think about it too much because it makes me sad. My daughter has brain damage and it will make the rest of her life that much harder. We don’t focus on that. We go about life as every other family, just with a few adjustments. I have two beautiful, amazing daughters who are absolute miracles. One has special needs, but what child doesn’t have needs? Some people have a lisp, some a lazy eye, some an awkward walking gait. We do what is best for our children. We make sure they don’t feel any less a person just because she has to use a wheelchair. We don’t want other people to pity us or feel badly for our situation. We want others to understand that our daughter is a person, bright and intelligent as any other 5 year old. Just yesterday she was passed over by our waitress because she saw her in the wheelchair. She asked Akira what she wanted and discussed her entire order with her. With Sakura she turned to me to ask for her order instead of asking her. She is perfectly capable of ordering her food and speaking with other people, but you’d have to talk to her to know that. Special needs is a broad term for those who live outside of what is deemed to be normal, but what’s normal? Life can be hard at times and we have to adapt our lives around the way the world is built, but everyone has hardships and you have to adapt as those hardships come along. We live life and we live well, very well…