It isn't as bad as you sometimes think it is. It all works out. Don't worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. He will not forsake us...If we will put our trust in Him, if we pray to Him, if we live worthy of His blessings, He will hear our prayers.
--President Gordon B. Hinckley
We have that posted on our fridge, and it is a comfort in during the rough times. No matter how hard things may seem now, things will get better. I have faith in that, and faith in the Lord. I know that little Kai was placed with us for a reason, even if I can't understand why, or think that I am completely inept. I have learned much over the last few months. I have been faced with challenges that I never imagined. My eyes have been opened.
I have good days and bad days. Days where I feel so completely inadequate and spend the day in tears. I have days where I am stronger and know that I will get through this. I wouldn't be able to do this without J by my side. He is strong when I am weak. He has his times when he struggles as well--and luckily, those seem to be the days that I am strong. The hardest part of the whole situation is the fact that J and I don't have any time outside of the house together--we don't have the luxury of loading the kids into the car and go to a friend or a relative's house. We can't go to the grocery store together. We just can't get out.
I have a mantra that runs through my head on the tougher days. This too, shall pass. I don't know how, or when, but it won't always be like this. We will be able to go camping, hiking, for walks, to the store, to the movies, to visit friends and family. Other people have special needs children and they make it work. We will too. Somehow.
Labor Day weekend was rough for us. It is usually a time when we go camping or spend time with family. J took Zuri to the park, and Zuri and I went to a birthday party. We are an active family and being stuck at home has been hard for us. We have had to adapt and we keep an eternal perspective. This too shall pass. I look to the quote above from President Hinckley, and it gives me comfort.
Another source of inspiration is a lady named Stephanie Nielson. I am sure many of you have heard about her. I first read her story in a magazine while at a prenatal appointment. This was before we learned anything was wrong with Jeremy. She is from Utah and was in a plane accident with her husband and the pilot. The pilot died in the crash, and she and her husband survived. Stephanie was burned over 80% of her body and has had extensive skin grafts and reconstruction. The amazing thing is her attitude. Instead of letting this take away her life, she has embraced life more fully and has been quite the motivational speaker. She has even been able to become pregnant again, and has been featured at many women's conferences and on Oprah. She has been featured in many magazines and has even written articles. I follow her blog here: http://nieniedialogues.blogspot.com/.
One thing I love about her is that she is real. She writes about the bad days as well as the good. She has had a rough pregnancy and is not afraid to let you see her. She laughs, she cries, she makes fun of herself. She makes the best out of a rough situation. She truly is an inspiration, and seeing her situation makes ours seem a little better.
On a different note, this blog started out as a way to let family and friends keep up with our lives since we live so far away. It has become so much more than that now. I have considered on many occasions making the blog private, but I also don't want to take away from those who read this blog either. I know more than six people read this, but that is all I have in my followers section. I love having readers and I love comments. As this blog becomes more--details all that we go through with Kai, I wonder how "public" I should keep it. I already have it unlisted so you can only find it if you have the blog address itself. Is that enough? I am going to put a poll up and based on the results (and comments) I will decide which way to go.
So, dear reader, since this blog was originally made for you, it is up to you. Vote or leave a comment. If the blog becomes private, all I would need is your email address to send an invitation and you will be able to see the blog just as you do now. :-)
Bambie,
ReplyDeleteLet me know if you decide to go private. Cody and I love following your blog. We are so inspired by Josh and you. It looks like you are taking such great care of Jeremy. I'm sure the world of G tube feedings and trach suctioning can be very overwhelming. You guys are in our prayers. I wish we lived close by so I could give you a date night or two. Hang in there brave mama!
When I read your blog, I would like to leave comments here, but I don't so often. It is hard for me to write in English. lol
ReplyDeleteI should learn English much harder.
Kimie
We are from Gunnison and read your blog often. We enjoy seeing the progress your sweet boy is making.
ReplyDelete