I've waited to post this article for a while. I wanted to take some time, think through my thoughts and make sure I communicate clearly and honestly. Being a parent to a special needs child is different, but it is the most rewarding thing I could ever have experienced. I wouldn't trade Harper Kate for the world, and I can guarantee none of our family members would either. As I've said many times before, we have all learned so much from watching Harper Kate and being her parents. She is not a curse, but a BLESSING. She can be difficult at times, but her smile makes every moment worth it. We don't ask you to look at us and feel sorry for us, just look at us rejoicing with who our daughter is and the fact that she is here.
My friend, who shared this article originally with me, no longer has her son. Hayden is living a healthy, fun-filled life in heaven. That doesn't make she and her husband's life any easier, but it reminds me to cherish each moment I have with Harper Kate here on earth. Hayden, Lauren & Brent have reminded me to make each moment count. To not take anything for granted and to rejoice in EVERY SMALL THING! Thank you Lauren, Brent & especially Hayden for reminding me of this!
1. I AM TIRED. Isn't every mom tired? I would never want to play the "compare" game, but my tired I do feel is different. My child still sleeps in my room. Does she have to? No, probably not, but it keeps me from walking in her room 3-4 times each night to check her when she coughs. Three times a day, I stop whatever I'm doing to administer medicines and prepare her tube feeding. This isn't difficult or too time consuming, but it's 3 times a day to remind myself that not every mom has to do this. They can continue with their day and not have specific times they need to be at home, or plan early in the morning on how long they will be gone. One medicine has to be mixed seperately, then drawn into the syringe. My day consists of making sure that every moment Harper Kate is doing some sort of therapy. If she's lying on the floor, she must be surrounded by toys, on a blanket, and I must make sure she isn't lying there too long so her head doesn't get too flat. If she's sitting, I need to make sure her chair is straight up enough that she is working her neck, but not so straight that her head falls. Multiple times a day we need to work on grasping and playing with toys. Then, there's always the important tummy time. She needs a certain amount of time on her tummy also. Oh yeah, feeding. She has to learn to eat. That takes 30 minutes just to get in a few bites to practice her skill. I'm a stay at home mom, so there's also dinner, laundry, ironing, errands, play dates with friends, my Bible Study (that I'm really not willing to give up), 4 times a week driving to therapy, keeping up with Harper Kate's medical paperwork, doctor appointments and other fun mother duties. This might explain the dark circles under my eyes at times, my hair not the cleanest you've ever seen it or the new found freedom of actually NOT putting make- up on. I know...I never thought I would do that either! Being tired would probably also explain these extra few pounds you see me carrying around right now. I don't have much time to work out. Could I fit it in? Yes, probably. Would it help me feel better? Yes, I'm sure it would. I need to work on it, but sometimes I just want to sit. I don't want to feel like I need to go work out, but like I said...I'm working on it. :)
All that to say, while I'm tired and Harper Kate is involved, a lot of these activities are fun, special time for my daughter & me. I have such a wonderful relationship with her and I have no doubt that although she can't tell me, she has more love & appreciation for me & her daddy than any other child. Her smile at the end of the day tells me all I need to know.
2. I AM JEALOUS. My friend, Lauren, who shared this article with me put this perfectly. She said she was "hurt." I think that's the best way to describe it. While sometimes I wish so bad that Harper Kate could do the many things other children can do, I think I'm just crushed and hurt that she can't have those experiences. I wish I could take her to a birthday party, have her jump in the inflatable play house or slide that's there. I wish she could sit in the grocery cart in Publix, rather than having to push her stroller around and have people look at my kinda funny. I wish she could toddle around getting into everything and smiling at me so mischevious! So, while there are so many things I wish HK could do, and it hurts me that she can't do them, I can't tell you how blessed we actually are.
My 19 month old child would love nothing more than to sit in my lap and look at my face all day long. What momma can say that?! Jarod and I plan to give Harper Kate all the experiences we can. See, Jarod works for Delta which comes with lots of perks. We can fly for free. So, we plan on taking our child to DisneyWorld ASAP and as many times as possible!!! :) We also have the best family and friends in the WORLD! Their children treat Harper Kate better than you could ever imagine. They have tea parties with her, they lie next to her helping her play with toys, they give her hugs, talk to her and think of her absolutely no different than any of their friends. Can I tell you how much that warms my heart? That my friends and family have taught their children such compassion and love at such a young age? BRAVO to my Peachtree City and Newnan friends and my family! You are doing such an amazing job with your children and it BLESSES my heart!
3. I feel alone. I do feel alone. My parents & in-laws do not live here, no aunts/uncles that live here to help out, but once again God has placed friends, that are like family, by us and they are amazing. I feel alone in that no one can really understand how difficult it is for us to leave her with a babysitter. Everyone says, just get a babysitter and go out. You need a break. You're right, but leaving her with a sitter takes so much preparation and trust. I feel alone in that no one understands my day and the struggles we go through. You want to know how I met my friend Lauren? Through FACEBOOK! One of our mutual friends connected us and it has been so amazing to share our journey, while so different and yet so similar with her. Thank the Lord for technology. I know it seems silly, but without Lauren, and being able to talk to her at times I don't know where I would be.
4. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy...
This make me furious and I'll be honest. If I hear you say these words around me, I'll probably look angry. Personally, I think it's rude, hurtful and incredibly insensitive to say these things. When I hear a pregnant woman say "as long as it's healthy," basically you are saying you don't want my child because she isn't healthy. That's fine, I wouldn't trade her, but you don't know what you're missing and how dare you say that to me! Why don't you just put in your custom order for what you'd like in a child? Better yet, why don't you be THANKFUL you can have a child?!?! Guess what, there are women in this world who would give anything to be pregnant with a Harper Kate! And they would consider her the biggest blessing they've EVER had! People throw around "retarded" as an insult and making fun of people. How self-righteous of you to think that you are better than someone and have the freedom to call them whatever you'd like. I can guarantee you that while Harper Kate cannot outwardly communicate, she understands MOST of what is said to her. If you ever said anything hurtful in front of my child, you'd better start running because I'd hurt you worse than you could possibly imagine. Ok...did I get my point across? I hope so. I really do apologize for hurting anyone or offending anyone through this paragraph.
5. I am human. I'm just going to paraphrase what my friend Lauren posted about this topic. She phrased my thoughts perfectly. Thanks Lauren for putting words in my mouth and onto the screen! :)
"When God blessed me with Harper Kate, he blessed me with a caring attitude. I hurt for people that are hurting. I want to help everyone in need. I have gained such a love for life. I will continue to take care of my child every day. I will continue to dress her like a doll. I will continue to make each day a special memory. Often, people forget about the moms of the special needs child. Wow what would it be like to go on a dinner date weekly? A pedicure monthly? Hmmm just a shopping spree for an hour. I am human. I am only 30 years old. I still want to have a life. I still have dreams of going on a “2nd honeymoon” for my ten year wedding anniversary.
6. I want to talk about my son/It's hard to talk about son. I believe she saved the best for last. I really don't find it hard to talk about Harper Kate. Anyone who has been around me knows that. I'll share her story with anyone, I'll open up about our experience with her. I believe God has given us Harper Kate to share her story and hopefully help other parents cope with difficult pregnancies, or special needs children. Please don't be afraid to ask me about my child. The smallest comments mean the most. I LOVE when my friends comment about her small accomplishments, about her long eyelashes and beautiful eyes, her cute clothes and her hair bows. I don't mind you asking me how she's doing because you know what? It lets me know you CARE. Don't be intimidated to talk to me about her or be afraid to ask. I LOVE talking about my child. Do you have enough time to listen and the heart for me to be honest with you? Sadly, some people don't. They say, "how are you doing?", but deep down I don't think they really want me to be honest. Sorry, if it's a bad day, you're going to hear about it....just be ready! ha!
Once again, Lauren's ending paragraph was perfect! I've changed the names, and characteristics of our child, but the rest of the paragraph are Lauren's words. They are exactly the way I feel. Thank you for loving us, our amazing child, and listening.
I am so glad that God chose Jarod and me to be the parents to Harper Kate. Raising a special needs child has its challenges but also huge blessings. We are rewarded with love and happiness daily. We are rewarded with happy tears often. The sounds she makes are worth a million dollars. She looks into our soul with his big brown eyes. We are a family of three. We do not need people to feel sorry for us. We have found a sense of “normal” in our life. We love our life! Yes, we often feel the six statements from the article above. We often feel sad. We often feel crushed. Luckily, the love that we have for our angel outweighs all of the sadness. My life is difficult but I receive more blessings in a week than many people do in a lifetime. That is true for all mothers to special needs angels. God is good all the time no matter what!
