My son, Isaac, has special needs. Fragile X Syndrome. And it makes it difficult-or should I say impossible- to be in the chapel each Sunday. We are the ones out in the hall and he is the one making high pitched noises and jumping around all over. We are just happy if we can hear the talks. And I apologize to the the rest who are in the foyer with us.
The only reason we are able to speak today is because my dad is at home with Isaac and my girls get to be up here with us. I just hope Eliza will be good! But nonetheless I’m so grateful for the opportunity to speak to you today.
Recently, Jeremy and I read an article in this month’s Ensign called, “Accepting the Lord’s will and Timing.” It talks about how when we confront our own trials that we should plead to “not shrink” as the scripture says-not retreat or recoil in hardship- and how not shrinking is much more important than just surviving. Well, not long ago and from time to time I have felt like I am just surviving. I have wondered what President Hinckley was talking about when he said “life is to be enjoyed, not just endured.” Because pretty sure I was just enduring.
Let me tell you a little back story. I am a carrier of FXS and have a 50/50 chance of having a child with special needs each pregnancy. Knowing this,
Jeremy and I still plunged a head into marriage and having children of our own. THe first, Amelia, was unaffected by FXS, so we went on to have another one feeling that we were lucky. To my devastation, this child, our sweet isaac, had it and I went into a deep depression.
It was very difficult for me as I realized how much my future changed in that moment. As he gets older many things get harder.
After having Isaac we got rid kof every scrap of baby items we owned. I wanted desperately to have another baby but felt I just couldn’t and we had to make a decision. I would cry a lot because my closest friends were pregnant and I felt I should be too. I would look around to find my two children, strangely looking for a third each time. But Isaac proved to be very difficult. Yet, we still couldn’t shake the feeling that maybe we should have another.
After months of much fasting, prayer, debate,Priesthood blessings, considering invetro, etc. we decided we would take a leap of faith and have another child, our little Eliza. Unfortunately, two weeks after she was born her results for FXS came back positive. We were heartbroken, but managed to still be happy and more hopeful this time. We knew this was a possibility after all. But I guess I thought deep down since we were faithful, God would grant us our desires.
Recenlty I got to a point where I was just a complainer. As a carrier I deal with depression, anxiety, neuropathy, and the like along with family members with the same.
I hit a new low. I felt depressed and felt forsaken by God. We have friends whos son was healed of Muscular Dystrophy after a Priesthood blessing. So We fasted, prayed, did all we knew how to do for my son and gave him a blessing, but nothing happened. Nothing changed his FXS. Isaac ceased to be healed or even visibly improve. And I listen over and over to my daughter pray each night that his Fragile X be taken away but nothing happened.
I became angry at God. And suddenly I felt that my so-called faith I had to have another child was simply a ridiculous choice. I listend to the world and listend to people around me wondering why I would have another when I couldn’t handle the two I already had.
I often felt like Sam on Charly when he says, "All I want is one lousy miracle! I've done my part!" I thought maybe I just wasn't faithful enough and yet found myself wondering what the point was if God does whatever he wants anyway?
But I didn’t lose hope. I still had my testimony to bring me through.
I came out of my bubble and realized that God and his miracles are all around me. I started to count my blessings and keep a gratitude journal. I was amazed at how ungrateful and pessimistic I had become about my life. My life wiht three beautiful children, an amazing husband, our first home, and so much more! I was missing it. I was missing ALL of it.
And I realized: God knows what is best for me. God knows what's going on in my life. And like a good parent, he allows things to happen so that we grow. After all, we are here to become more like him. And we need to remember that though it is important to have faith to be healed, we also need to have the faith not to be healed.
In the ensign article before mentioned, there is a story of a couple who wanted the husband to be healed of cancer. The husband said this: I l
: “Having the faith not to be healed seemed counterintuitive; but that perspective changed the way my wife and I thought and allowed us to put our trust fully in the Father’s plan for us. We learned we needed to gain the faith that the Lord is in charge whatever the outcome may be, and He will guide us from where we are to where we need to be. As we prayed, our petitions changed from ‘Please make me whole’ to ‘Please give me the faith to accept whatever outcome Thou hast planned for me.’
When we first decided to have a third child I would pray that it wouldn't have Fxs but it changed to thy will be done. And I'm still trying to understand what all that entails.
Fragile X, depression and other such things may never depart from my life-in this life-but I will remain faithful and try to remember that this is a time of growth. Growth catered just for me and my needs. Even if becoming what God wants us to be is painful.
There is a story of the currant bush that illustrates this very nicely. It was most recently shared by D. Todd Christofferson, but the original story is from Elder Hugh B. Brown.
I’d like to share a portion of it now:
He says, “I had purchased a farm. It was run-down. I went out one morning and saw a currant bush. It had grown up over six feet high. It was going all to wood. There were no blossoms and no currants. I was raised on a fruit farm in Salt Lake before we went to Canada, and I knew what ought to happen to that currant bush. So I got some pruning shears and went after it, and I cut it down, and pruned it, and clipped it back until there was nothing left but a little clump of stumps...I saw on top of each of these little stumps what appeared to be a tear, and I thought the currant bush was crying…. I looked at it, and smiled, and said, “What are you crying about?” And I thought I heard it say this: “How could you do this to me? I was making such wonderful growth. I was almost as big as the shade tree and the fruit tree that are inside the fence, and now you have cut me down. Every plant in the garden will look down on me, because I didn’t make what I should have made. Howcould you do this to me? I thought you were the gardener here.” I answered... “Look, little currant bush, I am the gardener here, and I know what I want you to be. I didn’t intend you to be a fruit tree or a shade tree. I want you to be a currant bush, and some day, little currant bush, when you are laden with fruit, you are going to say, ‘Thank you, Mr. Gardener, for loving me enough to cut me down, for caring enough about me to hurt me. Thank you, Mr. Gardener.’”
I can relate to that little currant bush. THere have been many times in my life that I wanted to do it my way, but followed God and am always grateful. I know God’s way is best, but sometimes it hurts. I wanted to have many neurotypical children that would be able to get married, drive cars, and have a life of their own. But God knows best. I wanted to serve in the church more. I used to hold prominent callings in Relief Society, Primary, and Young Womens. But now I realize how important my calling as a mother is. And yes, often people look down on me and judge me for the situation I am in, for a situation they don’t understand, but I just need to remember that I am blossoming as a currant bush-just what God wants me to be.
As the scripture says in Isaiah, “8 ¶For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord.
9 For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.
One thing that I am learningn more and more is how important it is to Accept God’s will. Even though I had another child knowing that it could or couldn’t have Fragile X, thinking I would accept God’s will either way, I don’t know if I was fully convinced. Faith is best when centered upon our Savior and knowing that whatever happens, it will be okay.
And when we pray for the desires of our hearts let us not shrink even if our prayers are not fulfilled the way we wanted. A prayer is not a wish list to be granted.
Elder Richard G Scott said
“Our Father in Heaven has invited you to express your needs, hopes, and desires unto Him. That should not be done in a spirit of negotiation, but rather as a willingness to obey His will no matter what direction that takes. His invitation, “Ask, and ye shall receive” (3 Ne. 27:29) does not assure that you will get what you want. It does guarantee that, if worthy, you will get what you need, as judged by a Father that loves you perfectly, who wants your eternal happiness even more than do you”
As a parent think of your children; what would happen if you gave them everything they ever asked for/wanted? Would it be best for them? No. We are Gods children. He knows best. But sometimes all we have to do is ask because there are blessings waiting God wants to give you and knows you desire it
Elder Scott continued to say
“To recognize the hand of the Lord in your life and to accept His will without complaint is a beginning. That decision does not immediately eliminate the struggles that will come for your growth. But I witness that it is the best way there is for you to find strength and understanding. It will free you from the dead ends of your own reasoning. It will allow your life to become a productive, meaningful experience, when otherwise you may not know how to go on”
Well, In the end, I might be up in Heaven and say, as Elder Cook said, “I hope you know we had a hard time.” But I hope that I will be able to say overall that I did not shrink, that I accepted his will even when it wasn't what I wanted.
I'd like to end As elder Hughes did in saying
there are many of you who are going to have some very difficult experiences: disappointment, heartbreak, bereavement, defeat. You are going to be tested and tried to prove what you are made of. I just want you to know that if you don’t get what you think you ought to get, remember, “God is the gardener here. He knows what he wants you to be.” Submit yourselves to his will. Be worthy of his blessings, and you will get his blessings.
And so I say
*Thank you, Mr. Gardener, for loving me enough to cut me down, for caring enough about me to hurt me. Thank you, Mr. Gardener.*
I know that if we stand faithful and obedient to the end that we will be blessed beyond measure. I know that each of my children were meant to be a part of my family and I love each of them. I know that Jeremy and I met for a reason and I'm grateful we have each other. I know that through the atonement of Jesus Christ we can find peace and happiness. I know that the enabling power of the atonement is real. I've experienced it as a mother. It’s the only way I know how to get through it all. I know God cares for me and loves me. I know if I follow his plan I can return home to live with him again.
In the name of Jesus Christ amen
I asked him what he wanted, giving him options. He said something that sounded like cheese and I said, "You want some cheese?" He stopped crying and whispered his repeated "Yeah, yeah." I walked to the kitchen and got him some cheese. I took it to his room and sat on his bed blown away that all he had wanted was a piece of cheese. It hit me how frustrating it is for him not to be able to speak or be independent in such things.
