Feeling Joy In Life Again!

It's been a while since I have posted an update.  I have done some soul searching that past few months and have realized that I had let my circumstance's in my life take control of my joy and happiness. I realize that through Christ, I really can't lose my joy, but I can be sad and unhappy when troubles  come up; which is ok. I just can't let it paralyze me.  I am going through the stages of grief learning to accept the life my child and family has been given.  I have come along way from the sadness in the last few months. God has shown me that He gave Chris and I this child because He trusts us to take care of him and raise him in the light of Christ and will use him for His glory. God has given me promises through the Bible that I stand on to keep me strong during the hard days.

Romans 8:27-29
²⁷ And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
²⁸ And we know that in all things God works for the good of those who love him, who^[a] have been called according to his purpose. ²⁹ For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters.

Ephesians 1:11
In him we were also chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will,

I have to remind myself everyday that God is in control and that no matter what happens there will always be a purpose that God has a plan for.  I have decided to get involved with a couple of organizations that I can give of my time and also encourage others with a message of hope.  This helps me to give of myself and help others in times of trouble.  You just never know when God will open a door that He will allow us to walk through.  It really does make you feel better to know you are helping others.  It helps too minimize the magnitude of your own problems. 

I have also learned that when you let negative consume you, the good sometimes is over looked.  Beckett  has been a huge blessing to our family. His smile and laugh are contagious and when he laughs, you laugh with him.  I often look at him and wonder what I would have done without him.  He is becoming more receptive everyday and learning to do simple tasks.  He is beginning to imitate behaviors I never thought he would.  He watches me do chores around the house and follows me to do the same.  He helps load the washer & dryer and even tries to help put dishes away.  He wants to help sweep, rake the yard, pull the weeds..(well, sometimes my flowers), help his daddy push the lawnmower, bag grass and even help sand his play house for it to be re-painted. 

His speech is getting better also.  On Easter Sunday a week ago, Beckett said his big brothers name for the very first time..."Taylor"...not so much with the "T" sound, but it was pretty darn close.  We were so excited!! He sings to the radio in the car, and just loves Bruno Mars! 

I know that there are going to be tough days ahead and that I still have to take it day by day.  But the only way I can make it is through the Grace of God!  Otherwise, I don't know how I would get through it.  I really don't consider myself a "preachy" type person, but I am being real about my thoughts and feelings.  I do also want to note that I am so far from perfect and am human like anyone else.  I just want to share with the world what God has done for me and my family. 

Easter Sunday 2013

Bruno Mars - When I Was Your Man - Haleigh Harris Cover

Next Step...I Mean Jump!

It's been a busy last few weeks and looks like the next few will be even busier. It's Rodeo Season for my husband and I.  We volunteer at the Houston Livestock Show and Rodeo to give back to the community here in our city.  It is a lot of work, but it is an escape from our everyday routine. The kids also really enjoy the dressing up and seeing all of the farm animals and fun things they have for them.

The video is sides ways..opppsy!

 

Even in the midst of all the everyday life bustle, we are still chugging along.  We are excited to watch Beckett  making new strides.  We are learning to deal with his temper tantrums by both ignoring them and by placing him in our dimly lit room on the bed, while he cries out the fact he can't have what he wants.  We have been pretty consistent with it and it seems that they have gone from 2 -3 hours down to about 15 - 30 minutes.  His receptive communication seems to be getting better.  His new words are "hot" and "cooooollllddd"...He tends to drag out the vowel sounds in his words.  His vocabulary both verbal and signs have made huge gains since the beginning of school this last fall.  I am also noticing that he is beginning to play a bit more independent with toys, especially trucks. We have watched him looking at the wheels roll back and forth when he plays with his cars.  Since Christmas Beckett has loved his new trampoline.  He has actually learned how to jump really high.  It has really improved his coordination.  I do have to admit, it took him a while to actually climb into it.  We had to force him in and once he realized it was going to be ok, he loved it.  I have already thrown my back out twice jumping in it with him. He laughs so hard he sometimes can't stand in it. His laughs are contagious.  When I watch him I forget that he even has any problems and is just like any other

kid having fun. 

New Hope - New Friends

I have seen first hand how a person can go from one extreme to the other in about a week.  Life is strange sometimes. I feel bi-polar!  LOL!  I think I'm at a point where I don't think I'll ever get it, but just to go with the flow.  Sometimes the light at the end of the tunnel is so faint that you feel like your moving away from it and not to it.  It's amazing how life turns around just when you need it to.  You just hold on long enough for that to happen.  God knows exactly what to do and how to tell you it's going to be ok. 
In the past week I have had the opportunity to meet new people who are in the same boat as me.  I am so blessed that one found me though reading my blog.  I am so excited to be able to talk to someone who is going through some of the same feelings and emotions I am.  It has given me the determination to continue to have hope and push forward with whatever it is I am suppose to do....I'm still working on that one.  My new friend has introduced me to a new FB group of AWESOME people who have children that have Chromosome 6 Disorders.  https://www.facebook.com/#!/groups/chromosome6/
I really don't know what I would have done if I didn't have social media to be able to find people who are going through the similar things as I am. 

My Bean - Riding His Belle At Therapy

I also found a new hope in sharing my information on SYNGAP 1 with a person who works in a large pharmaceutical company.  She has told me to appeal to gene therapy companies to peak their interest in doing research on treating the functional gene with micro molecules.  I'm not really sure what that is, but it's worth a try.  So I now have a new goal to work on.  My energy is slowly coming back and my hope in a new day is keeping me going.  Only by the strength of the Lord can I do this!

Rock Bottom & Climbing

As I look back during this last year from when I started this blog, I have to say that this last week has been the absolute worst in my life.  I have been fighting back emotions in several areas of my life over the past 6 months.  I will not lie about feeling so low that I really felt like not going on in this world.  As I said in early posts that I had an outside influence that was affecting our family. This unfortunately happens to be my ex husband.  He hates me, my husband and our success so much that he would do anything to hurt us. 

My youngest son I allowed to go live him because I decided to go to mediation instead of going through a arduous court battle, AGAIN! He has taken us to court before and lied about many things and caused us to waste close to $25,000 that was reserved for my older children's college education.  He has successfully turned my 15 year old son against us.  I believe my son being the youngest, has felt like I have forgotten about him while trying to raise my twins.  As most people realize, raising a special needs child does consume an enormous amount of time and money.  Therefore resulting in changes of the dynamic of how things are done within the family.
The frustration level that I feel is almost indescribable and unbearable.  I am very sad that my 15 year old and my 20 year old are having to deal with anger and bitterness that is directed at both myself and their father. My 18 year old keeps things to himself and doesn't like talking about his feelings.  Which also worries me.  I never wanted it to be that way and have no idea how to fix it.  I wish they would have had a happy childhood, but unfortunately they have had to pay the price for adults who can't act like adults.  I have to admit, that I haven't been the best parent, but I have tried my best. I feel I have failed as a parent and in those regards has been hard to accept. 
Trying to juggle not only my other children I have had to juggle my marriage.  You would think that we would get time together because we work together at the same job.  We don't have much alone time or time to focus on our relationship as a couple.  When you don't spend time together building you then tend to fall apart.  The stress of having a special needs child on a marriage was more than I expected.  I believed I was going to lose everything this week and didn't want to live to see what it would be like losing everything again.  I found myself laying face down on the floor crying in my room begging God to just take me away.  I even feel guilty saying it, let alone thinking it.  I heard a very small voice whisper in my ear, "I will carry you through".  I stopped crying and I prayed for the strength to carry on.  It gave me the peace that the future was going to be ok.  I think I had hit "rock bottom" this week and only the Lord above is able to carry me out of the rocks.  I still fight the sadness, but I try to remember the God is in control and He has a plan.  But I honestly have to say...I really don't know what that is.

Possible Treatment for SYNGAP 1 Gene

I have come across an article published December 10, 2012 that talks about the possible treatment for my sons disability.  I am praying that they will find one soon before the window closes on him.  Pray for a cure!  Read the article and pass it along to your friends you know that has a child with special needs or autism.  It could be a medical break through. 
http://sfari.org/news-and-opinion/news/2012/autism-linked-protein-sets-pace-for-brain-development








_My%20Boy%20Beckett_0004d1a5364c07060aec55945b000393&LNM=Merry%20Christmas!%20Spend%20%2475%2C%20Get%20a%20%2410%20Target%20Card%20with%20Promo%20Code%20XMASGIFT%20-%2012%2F25%20Only!

RESULTS ARE IN!!! SYNGAP-1 gene

I am sad and glad at the same time. Today we found out that my son Beckett has been diagnosed with a very rare autosomal dominant disorder called SYNGAP-1 gene. It doesn't even have a name yet. I am hoping to find out more information on it, but there is not much out there in terms of a prognosis.  I don't know whether to cry or breath a sigh of relief.  Texas Children's Genetic Center called this afternoon and told us that Beckett had a very rare genetic disorder that is so new that they even don't know much about it.  They have only just recently identified one more child with the same syndrome in February. We are relieved to find out that it will not affect his twin or his other 1/2 brothers and sister.  Neither Chris or I have the gene defect and the genetic counselor has explained that it was a fluke in nature.  They do not know whether it was caused by the environment or if something just when wrong after fertilization.  Of course, we might not ever know what caused it.   They explained to me that there could be more out there but the test is only a year old and very expensive to run.  Some of the symptoms of this disorder are seizures, schizophrenia, moderate to severe mental retardation, speech delay, and autism type behaviors.  The doctors at Texas Children's have worked us into an appointment on January 7th to see Beckett and talk with us about what they do know and how to move forward with his treatment.  I am now seeking a new direction and feel that I must do something to further the research of how to help he children and families with this disorder. 

I do however, must mention that even though the news I have received today about Beckett, I am grateful that I have him to hold and hug.  Today was a horrible day in our country and I will pray for those who lost loved ones in Connecticut in the school shooting.  My heart is heavy and broken for all those affected.  I realized today that even though I have trails of my own, I am very thankful that I have my children with me today.  I was also reminded that through bad times, God truely will make good for His glory, even if we can't see it now through the hurt.  GOD BLESS THOSE BABIES AND TEACHERS WHO DIED TODAY!! They are in the ARMS OF JESUS NOW!!

Trying To Hang On To Hope....

Considering all the trails that our family has had to face in the last several months, keeping up with my blog as been hard.  We have had many changes in the last six weeks for Beckett.  He will begin Monday with a new daycare sitter.  We have had to move him from his regular daycare he has been at since he was 3 months old due to the change of some of his class situation, therapy and school schedules.  We were not happy with the new teacher arrangement in his class at his daycare.  They seemed to be too young to be able to deal with the needs that Beckett has.  We were very disappointed that this was not fixed or changed for us, considering we were paying for a full time program when he was only in there part time. I do however have to clarify that most of the workers there were great with him.  They were typically older women and not teenagers or college students caring for him.  We now will have him with a lady who will keep him in her home, but she is also one who has a special needs child herself.  We are nervous somewhat, but praying for the best and hoping that she can deal with his needs.

We have had some regression with his potty training due to the fact that the girls in the daycare were not paying attention to checking on him to go use the potty.  He has a hard time remembering he needs to go and needs some reminders every hour or so.  He has started trying to say a few more words and sounds which is encouraging.  We still are trying to teach him the dynovox, but at home he seems uninterested in using it.  He has mastered several icons for needs and food on it with his speech therapist.  We know he can use it, we just need him to understand using it for his needs. 
Texas Children's Genetic Center still has not called us with the results of his EXNOME DNA Sequencing Test.  I have been patiently waiting for some kind of answer.  We are also trying to get Beckett into see a psychiatrist to have him evaluated for a behavior problem that is causing his melt downs.  We are hoping that they will give him something for his OCD/High Anxiety Behavior.  His fits seem to be getting worse has he gets into the stage of the terrible 2-3's that his little brain is entering, even though he is 4 years old.  We have noticed over the last few months he is more interested in toys and musical instrument's that seem to keep him entertained.  We are hoping the we will get to implement music therapy in his daily routine in the PPCD program at school.  We are seeing slow progress with him..I just still have anxiety over what the future holds.  I pray almost everyday that God would heal my little boy...I have to admit that it has been hard to hold on to hope, but I know there HAS to be a PLAN..

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Emotions Everywhere

We have had a lot going on in the Weldon house these past few months.  There have been days I have been on cloud nine and there are the days I wish I could run away from it all and never come back.  Granted I never would just pick up and leave, but I would be lying if I told you I never felt that way.  I guess I am going through a bit of a mid-life, not like the ones you hear of on TV or in a bar, but one where you look back at your life and wonder exactly what kind of purpose you have here on this Earth.  Mine? Well, I'm still trying to figure it out.  I really am dealing with the fact I guess I'm gonna get old one day. I will go out kicking and screaming just fighting age. I think about all that I deal with on a daily basis and how am I going to be able to keep up with my preschool twins and of course three older children, two of which are adults.  Beckett is obviously a handful. His twin Pyper, well she is a little spit-fire all her own.  Don't get me wrong, I love my children but they sure are hard work.  I find myself trying to keep in shape, trying to eat right, making sure I'm going to stay healthy for my kids that I end up getting sick and tired literally. Then on top of all that feeling guilty about it.  I know its crazy thinking but I think every mom goes through that at some point.  I am still trying to grasp my purpose..even though one is clearly being a mom and wife.  Sometimes you just want to do more in life...but is there more than that?  I'm not really sure, but I truely think there is. See, I even feel guilty for saying that I guess because I have always been about my kids and family in general. 

Mystro Please!!

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Well, I know it has been a while since I have had a chance to update my blog.  A lot has been happening in my personal life that has interfered with our normal routine.  I am now in a custody dispute with my ex husband over my 2 teenage boys.  It has been a challenge to try and keep on track with Beckett and deal with unplanned events that are happening around us.  Never the less, I must press on and give God the fight over to Him.  I have learned through the last couple of months to truly know what it means to be thankful in my circumstances.  I am allowed to have justified anger, but to know that God will see me through this and that He has a plan, which I learned AGAIN, that it is not always my plans he has for me. ;)  Keeping a smile on my face has been hard, but for the most part I am at peace and I know the truth will be shown for those involved.

Over the past couple of months Beckett has started school again and is now adjusting to a new routine.  He doesn't get a nap this year in the afternoon.  We are feeling the effects of this every evening when we get him home.  He tends to scream and kick until I can get him fed dinner.  We have been giving him a bath right after he eats.  He has been going to bed around 7 every night and sleeps until 6 in the morning.  I am hoping that he adjusts to his new routine soon. 

Besides the new routine adjustment, we have just gotten his new device called the Dynovox Mystro.  This full operational computer is going to be his link to communicating with the world.  I was so happy when we found out that our insurance company paid the full $9,000 for it.  This was an answered prayer that God could only do!!  I am blown away by all the things that he can do with it.  Beckett is catching on slowly, but I am sure that over time he will be able to communicate is basic needs in a few months.  He carries it with him everywhere. It even has his favorite restaurants programed in it with his favorite foods.  His frustration level will be incredibly lowered using this to tell people his needs. 

Beckett telling me he has a "Book"

 

In the meantime, we are still waiting for the results of our 3rd round of genetic testing to return.  We also got an answered prayer that the insurance company paid in full for the $15,000 test.  YES! That is correct..$15,000!! We thought we would be responsible for at least part of it at some point and were amazed again how God works when we just don't think He is going to have it in His plan.  GOD IS SOOOOO GOOD!