A dear friend sent me the following quote this morning, “A worried mother does better research than the FBI.” This morning I was trying to figure out what to blog about this week. I believe that blogging helps me get through weak moments. I am glad that technology gives me the opportunity to connect with family’s worldwide dealing with similar problems. Recently, I have had a few questions asked to me about Hayden. Have you thought about surgery? Have you thought about switching medicines? What about a specific diet? Does Hayden have Epilepsy? I love and respect people trying to help us come up with ways to help our sweet angel. I appreciate it more than you will ever know. Sadly, I believe I have researched every one of these questions. Sadly, Hayden’s condition is not curable. Sadly, none of these things are going to help. Hayden does have epilepsy. The seizures are just one of the many side effects from adenylosuccinate lyase deficiency. The problem with Hayden’s disease that people do not understand is the word BREAKING DOWN. The white matter is the connecting point in our bodies. As the white matter disappears, it becomes slightly more difficult to connect. The white matter operates everything in your body. Without white matter, you cannot walk, talk, and the list goes on. Unfortunately, there is not a cure to stop the breaking down. We will continue to see each of the problems increase as he gets older. We had an MRI in July. The results showed bilateral white matter damage. We did another one in October. Sadly, the results showed more white matter damage. This proves that his breaking down process is in full force. Have you noticed that Hayden’s hands are always balled up? Have you noticed that his beautiful mouth is always opened? These things are due to hypotomia. Sadly, his muscles are just so weak. Today, I would appreciate everyone to pray for his sweet muscles to gain strength. I feel like I spend my life researching on the computer sadly the outcome is always the same. We can continue to pray that one day we will be able to stop the breaking down process. I spoke to our neurologist today. We are going to try the ketogenic diet in the near future. Please continue to pray for less seizure activity.
Today, I also received an article about “6 things to know about a special needs mom.” I feel like it summed my life up perfectly!
Please read the article if you have not already: http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html If you are friends with any special needs moms, I am sure you have read the article already.
The following is how I feel/summarize each of these six facts.
1. I AM TIRED. Yes, I am exhausted. I have rings around my eyes. I might always have a smile on my face even when I don’t feel like smiling. A normal mom is exhausted. A special needs mom is past exhausted. The reason that I am so tired is SEIZURES. Hayden normally begins to have seizures at 3 a.m. I always hear them as soon as they begin. UGHHHH, can we not catch a break? Can we not sleep for more than 3 hours without being awake from PAIN? I know if I am exhausted, he is too! Then once we get our day started, we have so many little things to add to our daily routine. Let’s start by fixing the 7 medicines for our 9 a.m. feeding. Let’s dilute pills by watering them down. Let’s cut his sleeping pill in half. Then let’s prepare for our feedings. We must place a little formula, Miralax, pediasure, and cereal altogether to get a consistency that he can swallow. WOW- all of this before 8 A.M. This definitely explains why I only wash my hair every other day. This explains why I am always in a t-shirt. Not to add, we have to go to the pharmacy at least 3 times a week. Therapy is usually 2 times a week. We also have to constantly weigh him at doctor’s offices. We travel often to Jackson for appointments. WHEW on top of all of this, we must continue on with normal routines of work and house chores. Last week, someone called to tell me that something looked wrong in a picture I put on Facebook. Ha-ha, sadly the zero make up, rings under my eyes, 10 lbs. heavier are all just things that I have had to accept due to stress and lack of sleep. I went to the Doctor for what I suspected to be a cavity today. Guess what? It was NOT a cavity. It was stress and lack of sleep has caused me to start grinding my teeth. I am so thankful for my mom calling me weekly to give me a break. They just know when I need a “Breather” Whether it is a shopping trip, helping me clean, or watching Hayden while Brent and I want to do something, they are always there! WOOO God knew what he was doing when he made us live close to our parents. We’d be lost if we lived in a city with zero help!
2. I AM JEALOUS. I agree with this one only to a certain extent. I would never wish our pain on anybody. I would never wish our tears on anyone. I love children. I would hate to see children hurting like ours does. I am HURT when I see kids smiling, crawling, or holding their heads up. My child is so perfect. Why can he not do this? Yesterday, Brent and I went to the Warehouse in Cleveland. An adorable little boy came in with his mommy just a smiling. I would guess he was around 4 months old. He was not in his carrier. He was on his mommy’s hip. He was holding his head up and waving his arm. It CRUSHED my soul. I looked at Brent and said we are not going to be able to go out to eat with Hayden much longer. We are at the point of car seat transitions. Sadly, he will need a wheelchair soon. He will not be as easy for me to take in stores as most places are not very accommodating. So I would like to say I am CRUSHED and HURT not JEALOUS. I place a smile on my face remember the blessing that Hayden is. I remember earlier reading a blog about Special Needs Parents and Birthday Parties. This is one of the most difficult things that we have to do as we get to see 30 plus kids running around as we hold our angel. Once again this is not JEALOUSY; it is just what WE DREAMED AND WISHED FOR BEING CRUSHED. As Andrew said the other day, Hayden WILL walk Lauren. Until that moment, Brent and I have some great friends that will be coming to our home to cook with us and love on Hayden even if we cannot go in public as often. I am so thankful that God gave Hayden some “Aunt’s and Uncle’s” that will always be there to hug us, support us, be lazy with us, and come visit us at home when we can’t get him out as much. Thank you God for amazing friends. On the other hand, I feel that the “normal parents” should be JEALOUS of our bond that we have with our child. Not many parents experience an angel on Earth. We doJ I am so thankful that an angel lives in my home. He would rather lie on my chest than crawl. I am so THANKFUL for my angel!
3. I feel alone. WOW, this is the truth. Who can relate? Very few people in my hometown. Thank goodness for technology. My new best friends are strangers I’ve never met. My friends will listen but they don’t understand. Until recently, a dear friend was affected with terminal news for her child. Wow it is so nice to have her to talk to. It is so nice that I can help her through each day. Sadly, I’d rather be alone. I wish she didn’t have to experience our heartache. Do you ever see me cry? Never! I cry in the bath tub, bed, or car. It stinks to be so alone. Nobody can relate to 20 seizures day expect my Facebook friends that are dealing with the same thing. While being around my friends with kids, they talk about daycare, about songs, about buying toys for their child, about getting on to their kids. WOW luckily all these parents and grandparents have something to talk about! They can all relate! HMMMM, then there is me, who can I relate too? Just my Facebook Friends--- infact, if you believe I spend a lot of time on Facebook this is why. I enjoy being on Facebook because I CAN relate. Thank you Lord for TECHNOLOGY!
4. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... I have learned to not judge or hate people. I have learned to be the better person. Unfortunately, if you say these words in front of me, it’s going to be A BIG DEAL! Please respect the families that are hurting daily. In fact, if you feel that you need to use these words, you are doing nothing more than hurting families that consider these people their loved ones. One day, you might consider these special people apart of your family too. I know often people say it as a figure of speech. Well guess what? You are doing nothing more than making fun of someone who can’t help it.
5. I am human. When God blessed me with Hayden, 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 him 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 26 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. Thanks to my mom, I get these breaks from reality often. I use these breaks from REALITY as a BREATHER and DE-STRESSOR.
6. I want to talk about my son/It's hard to talk about son. I believe she saved the best for last. I LOVE that so many of my friends/family asks about Hayden every day. I love that so many people care about his small progressions. Sadly, so many people that I wish would ask about Hayden don’t. People claim the reasoning is they don’t know what to say. Hmm, what do you say to a mom of a special needs child?? The same things that you would say to “healthy” child’s mom. Why is this so hard? Just the simple things mean the most! Wow, I am so proud of him. Wow, Lauren he looks great. Lauren, he has the most beautiful lips in the world. These are just a few of the things friends have told me lately about Hayden. THEY MEAN THE WORLD TO ME. I am not excepting the fact of people don’t know what to say. If anyone doesnt know what to say it should be Brent and I. Luckily we’ve got the best support group in the world. We get the most encouraging letters, cards, calls, and text messages in the world. Sometimes, we might not want to talk about him because he might have had a bad day. Luckily, people should be able to see by the look on our face if we’ve had a bad day or not. We might just need to hear the little bit of encouragement. We went to the Yacht Club last Friday. We needed the encouragement that we got. The man stated it in just five simple words. I AM PROUD OF YALL! Wow, way to make me feel like I am doing a good job! Thank you Mr. Hooker, it meant a lot to hear on an emotional day. I am so proud of my child. I am so proud of his progress. I am so thankful to be his mother. I am so thankful for the people that care about him and check on him regularly. Hayden is my normal. Hayden is my blessing. Hayden is my life! I thank God for Hayden each day! I am proud of him just like people are proud of their “healthy” children.
I am so glad that God chose Brent and me to be the parents to Hayden. 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 little coos are worth a million dollars. He looks into our soul with his big blue eyes. We are a family of three. We do not need people to feel sorry for us. We have found a since 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 life time. That is true for all mothers to special needs angels. God is good all the time no matter what!
God is love. Those who live in love live in God, and God lives in them. This is how love is made perfect in us. 1 John 4:16 -17a. You were born with the love of God within your heart. When you live in the love of God, you will naturally live and grow in that same model. When you emulate God’s love, those around you respond to your care and thoughtfulness. When God’s love is perfected in you, the confidence you have in Christ and your Christian walk will naturally flow to others. There is nothing more important than the love you share with others.