Summer Is Coming to an End- Living with Spinal Muscular Atrophy

We have already lost 100 minutes of daylight.That means autumn is pushing its way in. Wow, Lizzy and I have not been outside a whole lot this year because it was so hot. Now. a break in the weather and summer has almost past us by.
What a summer it has been. Many things have happened. Lizzy had a wheel chair eval in May. My stepfather passed away in June, We sold the trailer for my mom. My sister Mindy was here in April and left the end of June to go back Kentucky. We traveled to Minnesota  for the FSMA conference and got to see many friends and meet new ones. We stayed with friends for a few days while there and had a great time . Lizzy got to meet the Viking Cheerleaders and Miss Minnesota.

Then, we got home and things did not seem right with Lizzy's Dad. He has not always been there for her and Christen  He had very little contact with her for two months. Its a very sad situation. Apparently, Christen and Lizzy's Dad had broke up and he had found a new life. I will not go into details but it was a bad time for Lizzy. Her dad would not answer her calls or see her for over two months. Watching Lizzy hurt was hard. I tried everything I could to keep her occupied and we had just moved on and  Christen was seeing someone. Lizzy's dad found out Christen was seeing some one else and "Poof" He was back in her life AGAIN. UGH... He will never understand or take responsibility for the huge hole in her heart that will never be patched. He’ll never understand the anger and tears that Lizzy experienced as she tried to comprehend a father that would vanish without sensible explanation. She no longer trusts him but she loves him. Its quite different now since he is back in their lives. Christen fell  hook line and sinker for him after everything that has happened. I am having issues with the situation. With out going into details my daughter has broken my heart. I do want her happy and to step up and to the plate and help out with Lizzy . I  have quit fighting with her and have shut-down. She wants a life with him and there is nothing I can do about it. He is manipulating her to make bad decisions and I am powerless. So, I am focusing totally on Lizzy and  blocking all the negativity out. I have spouts of crying because I am so hurt by Christen but I will get through this with God's intervention. I am seeking support groups and maybe even counseling to get through this.  I can do this alone. I have basically always have  took care of Lizzy myself.  I just need to understand that.  I have been praying so hard that Christen comes to her senses and makes the right decisions. Please, say a prayer for Christen that she makes the right decisions for her daughter and treats me with respect.

We went to UW and saw Lizzy's docs up there for muscle clinic. Her blood tests was great. We had Xrays done..... a great visit and... Lizzy has to have spinal fusion soon. UGH.... We knew it was getting close but never did we think it would happen this soon. Lizzy has had huge growth spurts and  her rib deformity has gotten worse. Please keep Lizzy in your prayers. Its an 8 hour surgery and its an 8 day hospital stay. Its being done in October. Hopefully, the end of the month. We did have lunch with the Pooles while in Madison and it was so great seeing them!! Love the Pooles!! Saw the Turnbulls at clinic. Love them too! Stella. so very sweet.

Good news finally after that last paragraph... Lizzy's new power chair has been approved!

Please, say some prayers for Brianna and for Jadon and hope the both get better soon. Please, keep Lizzy in your prayers too for a successful spinal fusion and good health.

"We believe in miracles because we live with one!!
www.our-sma-angels.com/elizabeth

August is SMA Awareness Month

Families !! Please!! if you have a child with SMA please visit your local fire dept and ambulance services. You need to introduce them to your child you and write daily resp protocol for healthy times and acute illness times. Let them know who you are and all about how your care for your child  with SMA . You need all this in place in case of an emergency situation and need their services. Make a scan disc of all vital info and carry it with you at all times and update it. Get acquainted with you community . No matter how old your child is 6months to adult you NEED to do this.!! You can NOT always do this at home. I also suggest having supplemental O2 at home. Please listen to me. This info can save your child's life. You can NOT always "just do it at home". Invite them to your home if your can not get out to meet with them


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