Everyone told me that it would be different with my own kids, and I prayed that they were right because kids have never been my forte. Teens, yes. Babies and children, no.
But they were right. In the ten months we have had with Tori thus far, I have been continually amazed at the patience, grace, love, and devotion that flows so freely from me toward her. This isn’t boastful because I know it has nothing to do with me – it is all from Jesus.
Motherhood fits me so much better than I ever dreamed and it has brought out the best in me (so far). Being at home every day to be a wife and mom is the most fulfilling thing I have ever done. I can’t imagine doing anything else full time…
…and now I daily face the prospect of not only losing my baby, but of never being a mother again.
Sure, we have options for parenthood. Five, to be exact. But none of them would allow us to keep Tori, to raise her here on earth.
———————–
The words of Alfred Lord Tennyson have wandered around in my mind ever since we received Tori’s diagnosis.
‘Tis better to have loved and lost
Than never to have loved at all.
-Alfred Lord Tennyson
I have pondered his words over and over again…And I don’t know if I agree, at least not at this moment, in the middle of our journey with Krabbe.
If we indeed lose Tori and God takes her to Heaven to be with Him, I know our hearts will be broken because we will no longer have her here on earth.
To lose her will hurt more than we can begin to imagine right now.
Will the pain we experience then be worth the immense love we feel for her now? Will it be worth the joy she has brought to our lives?
I don’t know.
Have we changed because of her presence? Of course. Am I closer to Jesus because of knowing her? Absolutely.
But losing her here on earth will be incredibly difficult.
Maybe it will be clearer after she is no longer with us, once we can celebrate her being with Jesus, free from Krabbe.
But this also applies to our questions about future children as well. The fear of going through something like this again is too much to bear at the moment. The fear of opening my heart again to another child is overpowering at times.
This is irrational because if she were healthy we would already be trying for the second baby – it isn’t like we are trying to replace her. But, for reasons I cannot yet fully name, most days I think I cannot handle having any more children if we lose Tori.
Fear is easy; hope is excruciating.
The easy thing to do would be to refrain from having (or obtaining through adoption) additional children. It would just be the two of us and we could do whatever we wanted.
But we didn’t want it to just be the two of us; we wanted a family.
This may seem preemptive and premature to some, but we aren’t exactly young parents and the clock is ticking. This is something we need God’s wisdom about sooner rather than later.
Please pray for Brennan and me to be able to clearly discern God’s plan for our future in terms of having more children.
Being a mother has been the best thing that I have ever done, and I pray desperately that I can raise Tori to be a godly woman who can lead her siblings well. That is all I ask.
Even So, Joy 
My heart goes out to both of you.Seems so unfair after seeing all the bad things that are happening to children today by their parents and you both are such wonderful parents.I can’t even imagine what you both are going thru.You are all in my prayers every day.
LikeLike
Lesa, I can tell you from experience, it IS worth the pain and heartache. And yet, I can also tell you from experience that losing Nathan was the worst thing we have ever experienced or expect to experience. MAYBE losing my husband would be as terrible. I think it might be. But it’s more in the natural scheme of things, since we know when we marry one of us will go first. I remember when I first fell in love with my husband I wondered if the joy and fulfillment I was experiencing would be worth it if something happened to him. I haven’t thought about that in a long, long time, probably not since we had our babies. Our first was completely healthy. I worried, like all expecting moms, that she might not be, but when she was born so beautifully healthy we rejoiced and moved forward. Then Nathan was born, seemingly healthy. But at 2.5 months he started losing skills, and by 5 months he was having seizures, and we learned that he had a terrible, fatal, hereditary disease and was not expected to see his 2nd birthday. We grieved, we prayed, we bargained with God, we had him prayed for…and eventually we accepted God’s plan for Nathan and determined to make the most out of every moment we had with him. And if I had anything to say about it, he was going to live far past his 2nd birthday. We were extremely proactive, as was our pediatrician, and jumped on every little thing to make sure he did as well as possible. We also were very vigilant about not getting pregnant again, because the chances were very high we’d have another sick child.
At least, we THOUGHT we were being vigilant. But God had other plans, and took the choice out of our hands. 🙂 When Nathan was a little over 2(!!) I discovered I was pregnant again. There was a LOT of fear. I even had an irrational fear that I was pregnant because God was going to take Nathan away from us. I did have an amniocentesis, because we needed to know if our baby was healthy or not. Children who are treated with copper injections from the moment of birth until age 3 often do much better neurologically than those who are not. It’s still fatal, but the effects are not as severe. I was so nervous about it, mainly because I didn’t know how I would cope with TWO such sick babies. My pediatrician tried to encourage me, saying she knew I’d handle it just like I did with Nathan. But God protected him, and Matthew was born exceedingly healthy, to everyone’s relief.
My biggest prayer, other than for Nathan’s healing, was that he would live long enough for his siblings to remember him. If he’d died when everyone predicted he would, Emilie MIGHT have remembered him, but Matthew would never have known him. And we might not have had more children. As it was, Nathan lived FOURTEEN miraculous, blessed, wonderful years! It was such a dark time when he died. I almost thought I wouldn’t live through it. Without Jesus, I would have sunk into a pit if despair. My husband says I wasn’t “normal’ for 5 years. (whatever that is!) You know, as a Christian, that God allows pain for our growth. The hard times are the learning times…when we learn to really lean on Him. Not that we’d ever ask for it, and I still, knowing what I know now, would not ask for another sick child. But the experiences we had enriched our lives in ways you are starting to comprehend, but even we, all these years later (he died in 1995) are still realizing ways our lives were and are impacted. And the pain is still there. But it’s more joy than pain.
And funny (not so funny) thing…I’d been tested for carrier status when Nathan was young and told I was not a carrier. So we didn’t worry about Emilie. Fast forward to a couple of years ago, when Emilie was pregnant with our granddaughter. They tested me again (since testing is so much more accurate now than it was 25 years ago) and found I AM a carrier, and so is Emilie. So now we wonder about our precious Matilda. We know now that God will be faithful and if she winds up someday having a baby like her uncle Nathan He will be there for her, as He was for us, in every minute detail. And because Emilie IS a carrier, and even more than that, because she had to have heart surgery last summer to replace her aorta and a valve due to an aortic aneurysm, she won’t be able to have more children. We all grieve this, but Matilda is an amazing, beautiful, spunky little toddler and she is enough. She’s a great gift. Emilie is on blood thinners the rest of her life now, so pregnancy would be far too dangerous. So our daughter, who we assumed was so perfectly healthy, carried within her a time bomb. We just don’t know, do we?
I don’t mean to write a novel here, but your post really struck a chord with me. I had exactly the same thoughts you are having. I didn’t know if I could face losing my child, who I loved so dearly and so protectively. I wanted more children, but didn’t want to risk another child with Menkes Disease. My chances were 50% of having another sick child if he was a boy, and 50% of having a carrier if she was a girl. Options were few, and of course abortion was out of the question. Above all, I wanted God to heal Nathan. But if he didn’t choose to do that, I wanted Nathan not to die. And along with that, I wanted God to help me to accept with grace whatever His answer would be. I was never angry with God, nor was my husband, which is not due to our being so great, but due to God covering us with his peace.
I will continue to pray for your little family…that you will see clearly what God’s plan holds for you. And for little Tori, that her time here on earth will be a blessing to all, including herself. And that her time will be LONG. 🙂 God is in charge of each moment we live, and the thing that has always helped me so much is Psalm 139. We will be here as long as he has ordained. Not a moment less.
Sending you my prayers and my love as a sister in Christ,
Jennifer Saks
LikeLike
Poignant testimony. Thank you for sharing it.
LikeLike
I want to first start by saying, you, your journey, and especially Sweet Tori have encouraged me so much more than you can imagine. I have prayed for you and cried for you. Let me tell you what Tori has done for my relationship with Jesus. (And my relationship with my children)
I lost my first baby in my second trimester of my pregnancy. I remember the feeling of utter failure. It was something I could not put into words for people who hadn’t experienced it. I had never wanted anything more than I wanted that baby after it was gone. I was supposed to be its shelter, its safe haven for growing, and in the end its mother. After my loss and a D&C people kept saying, “You ARE a mommy. You just have a baby in heaven.” How could I call myself a mother if I couldn’t even protect and nourish my own child?! I would yell at God and tell him I wanted with all my heart to hold my baby. If even, only for a moment. Why were there people out there who could have babies when they didn’t even want them? I wanted to physically shake every woman who had had an abortion and tell them, “if they only knew how badly I wanted mine how could the throw theirs away.” My heart physically hurt. I didn’t think I wanted to try again for another baby. I didn’t know if I could even have a successful pregnancy. I wanted that baby. THAT EXACT ONE. Not another. I wouldn’t ask for anymore if God would just let me have that one. (Please know, that I am not saying that watching your child perish over time even compares to a miscarriage, because I believe your hurt is far worse) But I believe we may have some similar feelings, as your words always seem familiar.
I was almost angry at people who had successful pregnancies and healthy babies. I wanted them to be in my shoes and me to be in theirs. (I wouldn’t wish it on anyone, but at the time I would have traded places given the chance.)
The yearning became too strong and my husband and I decided try. I have never feared more in my life. It wasn’t the fear of loss that I felt (been there done that) it was the fear of hoping and being wrong. How could I look at this baby and not want it to be the first one?!
And then I got pregnant. I have never savored the negative more. Morning sickness, I loved it. It meant I was pregnant. Back pain, I’ll take it, if it meant baby was growing. Swollen feet, weight gain , even birth was a glorious pain because I wanted what waited at the finish line so bad.
It WAS bitter sweet. So, so sweet. I held my daughter and thought of my child in heaven. I smelled her and hugged her and had hoped she would make me forget, but in the moment while the joy was indeiscribable, the pain was still present. I would be lying if I told you it wasn’t.
I see your journey and sweet Tori and she reminds me of my blessings. She reminds me to be thankful. She reminds me to talk to Jesus and hug my kids. She reminds me of the honor it is to be a mother, and a christian. You, as a mother, encourage me to praise Jesus and pray for my children. You remind me to think of others and not just of myself. You remind me, that while my world is back to speed, yours probably still feels as if you’re at a stand still. You remind me to pray for others. To pray for you, as a fellow mother and sister in Christ.
I tell you all of this, to encourage you. I can tell you as someone who has experienced a kind of love and loss story. Having now had my second baby, I wonder what life would be if I had let fear prevent from trying again. How much joy would I have missed if I had let the fear of hoping keep me from actually hoping and eventually succeeding.
I pray blessings over you and over little Miss Tori. She is such a victory for God’s kingdom. She is and you are such encouragments. I pray for healing over her, and you. Because I know hope is scary but worth it. I think of you daily and lift you up in prayer just as often. May God fill you with hope and peace in Jesus name.
LikeLike
I too lost my first child. She was born 10 weeks premature. The emotions and feelings you describe are right on target. My baby would have been 37 years old this past May 25th. I think of her often and I am her mother and always will be and she is my little baby girl and always will be. I had 2 daughters after I lost my first daughter and yes it is bittersweet because of the direction my life took as a result of my lose. I wouldn’t change my life with my daughters but I always long for the one I lost. Bittersweet! I was so distraught that I just turned everything over to God and asked for his mercy and blessings…. He has never failed me!
LikeLike
Thank you for sharing this Lesa. It is real, raw, honest and reminds me of the Psalms. It also helps me in targeting prayers on your behalf. Sending love and hugs from Mozambique.
LikeLike
Yes, I can tell you wholeheartedly that it is worth every single second. I would do it all over again in a heartbeat just to hold my baby girl again in my arms. You will ALWAYS be a mother. Tori made you a mother. You will always be her mother, even if she is home with Jesus. Even if you have more children…… Even if you don’t. Your bond with Tori will never end, even if she is with Jesus. Not a day of your life will pass without you thinking about her. I firmly believe that even in Heaven our loved ones can.feel our love for them.
LikeLike
God will lead you to exactly what you are meant to do. It may be almost impossible to even think of that now but many, many blessings await you and Brennan.
LikeLike